15 YO With Chronic Abdominal Pain
Posted over a year ago
Anyone here have any experience with chronic constant stomach pain below ribs in middle. My 15 YO has had severe stomach pains for 2 months. So far Xray,bloodwork, CT scan and endoscopy and colonosocopy all normal, except for Barrett's esophagus, which is an issue, but would not be causing this pain. ... more »
Anyone here have any experience with chronic constant stomach pain below ribs in middle. My 15 YO has had severe stomach pains for 2 months. So far Xray,bloodwork, CT scan and endoscopy and colonosocopy all normal, except for Barrett's esophagus, which is an issue, but would not be causing this pain.
She has not been in school for 2 months. Dr's now all say it is anxiety. She wakes up with this and goes to bed with this. Has it night and day and on weekends.
She does have some anxiety issues, was on prozac and is now trying wellbutrin.
If anyone has any information or personal experience I would love to hear from them.
Thanks
Lanikow - Has she tried acidophilus? It may seem overly simplified, but pain in the stomach can be caused by an overgrowth of H. Pylori bacteria, which exists in the body naturally but can multiply too rapidly for the immune system to keep it in check, usually in times of intense stress. Western medicine has all these fancy tests for H. Pylori but they are unpleasant and take weeks to get results. A simpler one is to take a little acidophilus (no more than 2 billion active organisms) and see if it helps. If the problem is H. Pylori, the acidophilus will usually work within 20 minutes. It should be taken as needed, not every day. Good luck, I hope she gets back to school soon.
Laura
Scamelo - Thank you, I will try some, it can't hurt. I don't think its H piylori because she had an endoscopy and they did biopsy some tissues.
Thanks
Llandon - The same thing happened to my old college roommate's teenage sister and it turned out she was pregnant. It completely stumped the doctors who ran many tests except for a pregnancy test I guess. The baby was positioned way up above her abdomen and as the baby grew, she was in more and more pain because the baby was actually pushing against her ribs/diaphragm area - being the young girl she was at the time, she didn't realize she was pregnant but she was in a lot of pain. Eventually, the doctors did figure it out and literally pushed on her midsection to get the baby pushed down where he should have been. I don't mean to frighten you...it's just one weird thing that reminded me of your story.
Scamelo - Hi, I know she is not pregnant, would have shown on CT scan and xrays, besides she does not get out much at all!
The story did make me chuckle however.
Debsea333 - How about spastic colon, I had that and I had pain in the midsection, that wouldn't show up on exray or ct scan, it is a muscle spasm, I took bentyl,and that worked, it can't hurt for them to think in this direction
Deb C
Amyyates - I had to have over half of my colon removed when I was a teenager. It was the strangest thing. I had gone through my entire life until I was 18 with a "nervous stomach" and so many other things were said to be the cause of my extreme stomach pain. My symptoms were: extreme pain in the middle of my stomach, bloating, constipation, and to a lesser degree nausea and vomitting. Finally, when I was in my first semester of college, my symptoms became constant and more severe, and I was also having diareaha. I lived in a very small town and my doctor finally referred me to have some tests, including a lower GI. Turns out my colon was twice the length it should have been (a birth defect sort of thing). My colon was literally knotting up and was to the point where it was getting twisted and could have lead to infection and possibly been terminal. I woud urge you to have your daughter checked. My life changed for the 100% better after my colon surgery. I finally felt normal. I have gone on to be a very healthy adult in my early 30's, with two children! I wish the best of luck to you. I truly know how your daughter feels.
Scamelo - Thanks for the information. She did have a colonoscopy and all was normal with it. They found nothing. What test did you have to diagnose this. She does not have any other symptoms except occasionally feeling bloated after a meal. No vomiting or diarrhea.
We will be going to another ped gastro next month just in case.
Sjoy123 - I had very similar symptoms last year, unbelievable pain in the upper part of my stomach and between my ribs, I had an abdominal MRI which showed all to be normal, after 7 months of thinking I was going crazy, I insisted on more tests, had an ultrasound and it turns out my gallbladder was so bad that I had it removed within a week, and never experienced the pain again. Has she had her gallbladder checked? Some tests, like an MRI can miss the problem. I also had the vomiting and anxiety. It could be worth checking. Good luck!
Sky575 - Have you had her tested for celiac disease? My close relative had similar symptoms. She, too had a battery of tests, all which were negative. For over a year she suffered, until a new physician tested her for celiac disease. That test was positive. She now enjoys good health if she stays on her gluten-free diet.
Scamelo - Thanks so much to all of you. She was tested for celiac, came out negative.
She had an EKG about a year ago or less. She does have low BP. No vomiting thank goodness. The EKG and cardio visit was all normal.
The CT scan showed the gall bladder to be normal. Would an ultrasound show more?
Sjoy123 - I had an abdominal MRI, which said my gallbladder was normal, normal bile ducts etc., however a simple ultrasound showed something very different.. my gallbladder was full of stones and in overall very bad shape. That is what saved me. My pains were excruciating, lasting hours at a time. At times I felt I would pass out from the pain. Your daughter's pain sounds like it is in the same location. An ultrasound was my answer, ask her Dr. about it. Just a note, I also had the endoscopy which showed nothing but acid reflux.
Scamelo - was your pain in the middle area, sort of below chest, kind of in between ribs? Was your pain daily?
Thanks so much!
Stephieb - My cousin has been going through a very similar experience until recently. It didn't matter what she ate or didn't eat she always felt the pain in her stomach, nauseasnous and sometimes vomiting. The gastrointestinal doctor that she is seeing has had her on a diet of very low carbohydrates and NO high fructose corn syrup for a month and she feels like a million bucks! The high fructose corn syrup is in just about EVERYTHING that we eat (cause it is cheaper than sugar). Start looking at food labels and see if you can cut some of it out of her diet and lower the carbohydrate intake and see if it makes her feel any better.......sounds like with everything else you have tried it can't hurt.
Scamelo - I will mention this, but this one will be hard. She recently became vegetarian and won't touch meat, but is eating lots of things like, pasta, cereal and carbs.
Thanks so much
Sjoy123 - Hi, yes my pain was in the middle, upper abdomen, like behind my ribs, sometimes it would feel like more on the upper right, almost as if I could grab the bottom of my (right) side of ribs and it was there. At the beginning, it wasnt daily, it was maybe once a week, towards the end it was every day. When she has the pain is it really bad? Like you cant get a position to take it away.
Stef0424 - Hello there,
I noticed your blog and it caught my attention. When I was about 16 I was facing the same things your daughter is. I had a colonoscopy done, and a laporoscopy, on top of test after test which always came back negative. On top of the stomach pain, my weight dropped to 85 pounds, my vision became blurred, and I started having severe migraine headaches. I missed a lot of school due to this, and became so exhausted from the pain that I slept for hours, upon hours each day. My doctors thought that I had Lupus, Crohn's disease, Diverticulitis (which runs in my family), you name it, they tested me for it. After almost 2 years of tests, I was told that I had endometriosis, Ovarian cycts, and also a stomach ulcer, which I still take medication for to this day. My doctors had put me on a medication called Ponstel, which was used more often years ago for menstrual pain, but was not very easy on the stomach. It worked very well for me, along with a high dose birth control (Ortho Evra). It has been 4 years and I have been mostly sympton free. My endometriosis is very mild now, and thanks to the birth control, it is under control. I am now on a low dose pill, and have no problems and limited pain. I hope this helps!
Novaleesa - I would also urge you to have an ultrasound done on your daughter's abdomen, especially the gallbladder. That is a very typical symptom for stones in the gallbladder. I had that problem when I was 24. Just ridiculous pain that had be huddled in my bed curled in the fetal position and crying. Woke me up every morning for a week. I'd wake up and go pee and usually passed gas and the pain would lessen a little and at first I thought it was constipation. Finally, after a week, the pain just wouldn't go away and my husband took me to the ER and they did the ultrasound and my gallbladder was FULL of stones that were causing me the pain. I certainly hope you can find out what's wrong and then be able to get it taken care of. Good luck!
Mrmd - The vegetarian thing, eating lots of things like, pasta, cereal and carbs, is likely a big part of the problem. Do some internet research a on a paleolithic diet. I think you will see a huge improvement within two weeks.
Mrmd - The vegetarian thing is likely a significant part of the problem. Research a paleolithic diet on the internet. Two weeks after changing the diet and I would expct you to see a big improvement.
Novaleesa - This discussion isn't about me, but I feel like I'm learning things anyway.
Pyxi: I can't figure out why people would have symptoms return a year or so after getting the gallbladder out. Can you elaborate? I have a theory, but not sure about it. I had never heard of this happening, so it makes me wonder if 1. the gallbladder was not those people's problem to begin with and 2. Why it wouldn't happen to everyone. Personally, my symptoms went away after the GB was removed and it's been great. Downer now is I can't eat too much salad anymore because it and some raw veggies give me indigestion and then I burp it up for quite awhile after that. EW! :)
mrmd: I'm going to have to look up this paleolithic diet you've mentioned. I've never heard of it and we didn't discuss it in my nutrition class so I'll have to do the learnin' on my own ! I'm highly in favor of red meat and other meats in my diet, but I'm finding that the older I get, the lazier I am and the less I want to deal with making it!! LOL Plus, my kids just plain don't care for meat that much. They are perfectly happy eating just grains and veggies and fruit.. and cookies and ice cream of course!
Anyway, hope the information we've put out helps someone out there.
Mrmd - Paleolithic diet
The Paleolithic diet (or Paleolithic nutrition), also popularly known as the paleo diet (var.: paleodiet), caveman diet, Stone Age diet and hunter-gatherer diet, is a dietary regimen which emulates the diet of wild plants and animals that humans habitually consumed during the Paleolithic, a period of about 2.5 million years duration that ended around 10,000 years ago with the development of agriculture.[1] Based upon commonly available modern foods, the Paleolithic diet consists mainly of lean meat, fish, vegetables, fruit, roots and nuts, and excludes grains, legumes, dairy products, salt, refined sugar and processed oils.[1][2][3]
First popularized in the mid 1970s by a gastroenterologist named Walter L. Voegtlin,[4] this nutritional concept has been expounded and adapted by a number of authors and researchers in several books[5][6][7] and academic journals.[8] Building upon the principles of evolutionary medicine,[9] it is based on the premise that modern humans are genetically adapted to the diet of their Paleolithic ancestors and that human genetics have scarcely changed since the dawn of agriculture, and therefore that an ideal diet for human health and well-being is one that resembles this ancestral diet.[3][10]
This dietary approach is a controversial topic amongst nutritionists[11][12] and anthropologists.[13][14] Advocates argue that modern human populations subsisting on traditional diets similar to those of Paleolithic hunter-gatherers are largely free of diseases of affluence,[15][16] and that such diets produce beneficial health outcomes in controlled medical studies.[17] Supporters point to several potentially therapeutic nutritional characteristics of preagricultural diets.[10]
Sjoy123 - Once your gallbladder is out, its out, no more pain from it. If you continue to have pain it, it was more than just that.
Haggishunter65 - I had pains so bad in my feet that I could hardly walk at times. I am a 42 year old woman who has lost a bit of weight. I was drinking a lot of flavored water, a couple of bottles a day. I stopped drinking the water and the pain went away. My friend had chest pain and has had every test under the sun done, she has been having chest pains for two years and no one could figure out the cause. Every doctor and specialist she saw could not figure out what was wrong. I told her about how I had stopped drinking the flavored water and I had no more pain and guess what she did the same thing and she has had no more chest pain. I had another friend call a couple of days ago to say she couldn't come to my party as she was having unexplainable chest pains, she also had been to the docor and even the ER. I asked her if she had been drinking flavored water and she had, she stopped and has had no more problems.
Pedders - Hi, I am a 28 year old man and I have suffered with chronic stomach pains for the last twelve years. After years of various visits to different doctors and all manners of different tests they diagnosed me with I.B.S. (Irritable bowel syndrome).
Things that affect this condition are what you eat, stress, lifestyle, basically everything.
There is no easy way out of it, you just have to try different things.
Perhaps you should ask your doctor if this could be your daugter's problem. Good luck
Jmik11 - I have a 16 year old who has been going thru similiar things for over a year. She is very active in sports, eats healthier than any of us, drinks no pop. She has constant abdominal pain, and went thru all of the testing. We have been told that she has ovarian cysts and ibs. On medication for over a year, she is no better. What caught my attention was your posting about becoming a vegetarian. My daughter has developed a dislike for meat over the past year. When her pains are at their worst, i have noticed that she also gets acne breakout, and a rash across her cheeks and nose. The pains seem to be worse as her bowel movements are more frequent. We are really stumped, and frustrated, seeing this affect her life so much.
Scamelo - I can understand your frustration. She is know getting a sharp pain in her left side. I took her to a chiropractor to see if she can help.
Her pain is up below her chest mostly in the middle, so no Dr. thinks it can be ovaries or that area.
I wonder why your dr. gets the rash? mine does not. She is basically in pain, staying home. She had more bloodwork and xrays today, all looked normal.
We are so frustrated, because even if its anxiety, when will it go away? She is on a small does of wellbutrin right now
Scamelo - pedders -
Was your stomach pain daily and constant. How were you diagnosed with IBS and what if anything helped.
Thanks
Novaleesa - Well, it's not entirely true that if you're not born with it that means something is causing it. You can develop problems later in life that are still genetic but not a result of an outside cause. For instance, Parkinson's is a genetic disorder that doesn't show up until the late adulthood. I believe that there are a few autoimmune disorders that don't show up at birth but develop later. Like I said, I could be way off, but the thought popped into my head and I thought I'd throw it out there for your consideration.
Clarissa
Janek1969 - I am currently experiencing the same EXACT issues with my 13 almost 14 year old daughter. My girlfriends found this for me on the internet. She has had pain since the end of January and been out of school for 7 weeks. I am sorry for what you are going thru I know that I feel a bit crazy at times and extremely helpless. I feel as if my daughters pain has fallen on deaf ears and because all of her tests are "normal" that it has to be emotional in the doctors eyes. I would love to exchange notes. if there is any information or support we can provide to eachother I think it would be great. Crazy mom in San Diego :)
Scamelo - My daughter did have mono about a year and a half ago. She just had bloodwork and all is normal as far as that.
Janek1969 - Any information I can get my hands on I will take after all that is all the "Doctors" are doing is grasping at straws. That is when I PUSH them. As long as I don't hear the word constipation again. :) Or Emotional.....I think that is doctor speak for "we have no idea"
My daughter is currently being treated for Abdominal Wall Syndrome...but she has had no relief. But it might be worth some of you to research.
Tina1215 - I also have a daughter 12 yrs old going thru the same thing now. I feel like I am going crazy. She also has had a colonoscopy,sonogram.CTscan,blood work. Everything normal. She hasn't been to school for six weeks. She can't walk without the use of a walker and that is just to go to the bathroom and to bed. I have to help her get up off the toliet, out of the bed, and out of the recliner. I have rented a wheelchair to get her back and forth to doctors. Her pain started in LLQ and now has moved up to her ribcage. She feels nasueous and has no appetite. She is crying all the time. Doctors are baffled,and passing us around to different doctors. In Jan, She did have laproscopic surgery to drain ovarian cyst. and is on birth control was checked for endomitriosis and PID. All negative. Had pap smear. all clear. Keep sending us home on pain meds. She can't go to school on meds because she can't function. I would be grateful for any help.
Scamelo - My daughter is still about the same. For her pain she is doing better for a day or two after a chiropractor adjusts her. Don't know if its physically helping or psychologically helping, but will take what little relief we can get.
Tina
I feel your pain. your daughter is in much worse shape than mine. I hope and pray that they find what is causing her pain.
Gspirit - . If it were my child and I was treating her physical self and coming up with little relief I would try treating her inner self as well....I would try a psychologist or psychiatrist and maybe look into hypnotherapy..................may as well treat the whole person. When all else fails this could not hurt. The human mind is perfectly capable of physically inflicting harm to the body. Good luck!
Scamelo - Thanks, My daughter is seeing a psychiatrist and councilor just in case. She is on meds, but so far that has not helped either.
Janek1969 - My daughter too is about the same and we as well are covering all over our bases both physically and emotionally. And I am 99.9% certain that there was not an anxiety or depression issue until all of this started. The truth is we as parents are more in tune with our children than each individual doctor that we deal with. I am glad that we can share all of our notes and hopefully get to the bottom of what is causing our precious children such grief. Tina 1215 you arre not crazy just a concerned mom...I feel your pain and I too will pray and keep good thoughts for you and your daughter. Hang in there all of you. :)
Janek1969 - Let me clarify....I think that the fact that we have not found an answer has "maybe" created a bit of anxiety and or depression for my daughter but not before or do I feel this is by any means the cause of her ailment. not to mention my own depression & anxiety! :O
Tina1215 - Thank you for posting Scamelo and Janek1969. My daughter isn't any better in fact her pain is worse. We were in ER friday, and because sonogram and WBC was fine they sent us home with more pain meds. It is now monday noon. and have been on the phone all morning to get in to see a GI specialist. They are putting me through a bunch of phone calls back and forth to peditrician and the Dr that did the colonoscopy. Doesn't look like we will be seeing anyone today. Another day of pain. Don't they understand that keeping a child on all these meds is doing something to her stomach. She has gotten to the point she wont hardly eat or drink. They just aren't doing anything because she isn't vomiting, doesn't have a fever NOTHING, except pain. I feel too, that this isn't an anxiety or depression problem. Might be now, after six weeks. Prior to this straight A student, in the band. Lots of friends. NO emotional problems.I hope they do something soon, before we both go crazy. Thanks for listening.
Janek1969 - Hang in there and unfortunately in this dy and age we do have to be the squeaky wheel for our child....I had to call every 20 minutes once just to get a call back REMEBER YOU have rights! It might be a good idea to have them admit her into the hospital so you canhave all of those test and more run at once I know in California you do have the right to say you want your child admitted into the hospital....I know it's hard to FIGHT but you have to for your child. Stay strong and please keep us posted.....many time things are going on w/out fever or vomitting and at this point she is probaly is dehydrated and suffering from exhaustion...I would ask your pediatrician to admit her....and if he/she does not and she continues to get worse go back to the ER....I know what it is like to second guess yourself.....in this case I would think it bestto err on the side oc caution...hang tough! your new friend in CA
Scamelo - I brought my daugher to the ER last week. They did xray and ran blood and urine work. All normal so they sent us home. My daughter is eating, so I feel like I am in better shape than some here.
While my daughter did have some anxiety issues upon starting high school in the fall, and it could be that, I don't see how it could be daily pain. she does not think its anxiety either, but you never know. she is on meds for that, but it has not helped at all.
May 15 we go to another pediatric gastro for another opinion.
I wish us all much luck and keep us posted please if you find relief.
Tracey1980 - Hi there,
reading the post's ring so many bell's for me! I have suffered from chronic abdominal pain from around the age of 14, was 1st admitted to hospital and told it was constipation...I even had my appendix out at 17yrs and there was nothing wrong with it but at the time the docs thought that it was - due to the pain I was experiencing. I am now 27 and last yr was diagnosed with Endometriosis, I was told by the consultant that the average time taken before it is diagnosed is 11yrs!!!!!
The only way that it can be diagnosed is by having a laporoscopy, my pain has been all over my abdomen, even in my shoulder....I had numerous tests done all negative - apart from the laporoscopy. I too was treated with anti-depression pills and also told that I had IBS!!!!! I really feel for your girls, I had over 10yrs of pain and felt like I was going mad - I even wondered if I was imagining the pain! I really hope that your girls wont suffer for as long as that, but all of the symptoms sound like what I was having for all them yrs. It is worth asking the question to your doc's
Tracey.
Scamelo - Did your pain get worse monthly or at any time? My daughters pain is in pretty much upper middle below ribs. I was told that was too far up for endometriosis, but if you had that it might be it. Could this be seen with an ultrasound as a base do you think?
Gokathymac - Have you considered celiac disease? Celiac is an autoimmune response to gluten in the diet. Gluten is a protein found in wheat, barley and rye. My older sister (age 53) was suddenly experiencing severe stomach pains and had a lot of gas. The doctors checked everything. She was a smoker and was scared she had cancer. Two older brothers were diagnosed about 8 years previously with Celiac. She talked to her doctor about it, but they didn't really know what celiac symptoms were. She did have the blood test for celiac (test for anti-bodies in the blood) but that came back negative. She ended up having an endoscopy to check her stomach and small intestine because they thought maybe she had an ulcer. Everything looked fine to the doc, but just as an after thought the doctor took a biopsy of the small intestine and found it was positive for celiac sprue. My sister immediately started a gluten free diet and has been healthy ever since. I went ahead and had myself tested via a new process offered by Entero labs in Texas. Turns out I was also showing an immune response to gluten in my digestive system, but did not have typical celiac symptoms. I got headaches, respiratory problems and skin problems. I also had had a positive result from an nuclear anti-body test which may indicate autoimmune reaction in the body. I have been gluten free myself for 2-1/2 years. The last nuclear anti-body test came back negative. I am healthier than I have been in a long time. There is not much known about celiac disease. Many doctors don't even know about it. It manifests itself in a variety of symptoms. My oldest brother got a terrible skin reaction that was in the form of painful sores (not eczema like), my middle brother had stomach problems and horrible eczema. My sister had sudden severe stomach pain which sounds similar to what your daughter is experiencing. If the doc hadn't taken that biopsy by chance, she may not have figured out what she had for a very long time. Google "Celiac or Gluten Free Forum" and see what's out there on the web. It's MUCH more prevalent than people thought. Also, it seems to occur more frequently in Irish, Swedish and Italian decendants, but crosses all races and ethnic classifications. Good Luck.
Scamelo - We tried gluten free, she lasted for about 2 weeks. during that short time no improvements. I am sure it was not long enough, but since her blood work seemed ok ( although the IgG was +) the gastro said she did not have Celiac. We may try again. she has no other symptoms however.
Tracey1980 - No the ultrasound is no good, what happens is he lning of the womb attaches itself to the organs of the body and grows and basically depending upon where it is growing depends on where the pain is...mine was generally right sided but travelled, it made me very tired, the pain did also move into my legs. The reason that they need to do the laporoscapy is so that they see where it is growing (if it is)! As for the pain, yes it did tie in with my periods but not all the time, it seems to me like your daughter has suffered long enough and it may be worth them investigating anyway?
Gokathymac - Sorry, I did not see the response a couple entries above me that you had tested your daughter for celiac and it was negative. If they just did the blood test, that is often inaccurate and gives a false negative -- and my sister is an excellent example of that. My blood test also came back negative, but the Entero fecal test was postive. I ended up having most of my family tested by Entero including other brother, sister, neices nephews, my parents, husband and my kids. Turns out we all carry genes that may predispose us towards celiac and most of us had positive anti-body results. My neice and nephew went gluten free as a result and both report better stomach health and know immediately if they consume gluten in their diet. If you are still at a loss for her illness, trying a gluten free diet for a few weeks may be worth a try.
Tadich - My 15 yr old daughter has been going through the same thing since January and we finally got a diagnosis yesterday. Her lactase enzymes were 1.4 when they should be at least a 7.5. She can't tolerate any dairy or any products that contain milk as an ingredient. She is also being treated for bacterial overgrowth. Do you know if she was tested for these things during her endoscopy/colonoscopy? The reason I ask is because my daughter previously had these procedures done without them checking for these issues. Also, if she was tested for this, it would have taken approx. two weeks to get these results back from the lab. Sometimes this can also be tested through a breathe test. Just a thought.
Janek1969 - I know at this point I am pulling my hair out!! I feel like all of the doctors think I am crazy and my daughter is too! Thank you I will email her doctor today and ask about this. I know she isn't as bad as some but watching her in pain and not have much of a life at 13 years old stinks. I would love for her to get back to school and back to "normal" as we know it!
Scamelo - Tadich
What kind of tests did they do for the lactose enzymes? Does she have any other symptoms from it like diarrea? Did your daughter only have stomach pain and was it daily non stop or dependent on what she ate? I would love to know what tests were done for this and her symptoms.
Thanks
Gokathymac - You should really check out this website:
https://www.enterolab.com/StaticPages/Frame_TestToOrder.htm
Not only do they do tests for celiac they also test for other problems like milk, eggs, yeast and soy. When we all got tested for celiac, we included the other panels and my neice and nephew and son (all gluten sensitve as it turns out) also had a high degree of immune response to the proteins in milk. Turns out that all three have to stay away from milk, cheese and ice cream too. For whatever it's worth there is some very interesting info on the site.
Scamelo - I have heard of that lab. I will first see if we can get it done thru dr. and bloodwork, as money is tight with so many things going on. We did take her off lactose for a short time, during that time she was no better.
Tadich - Scamel
Intially my daughter had major stomach pains, bouts of non-stop belching, nausea, gas, and emptying her bowels 3 - 5 times daily. Intial diagnosis was chronic constipation (yes, believe it or not you can have constipation and still continuously use the restroom). After weeks of cleaning out and eating properly, the doctor decided to take further action. We eliminated dairy products from her diet and this didn't work. What I didn't realize, nor do many people, is that when your enzyme levels are that low, you can eat anything that has milk indredient in it - which eliminates most quick fix meals, cereals, etc.--- We;re also having to keep a close eye on her sugar intake. -----. - I'm not sure of the name of the test - it was done through the endoscopy/colonoscopy. We were only told that it was to check her lactase enzyme levels and the other was to check for bacterial overgrowth. -- Unfortunately, this cannot be detected through bloodwork. Good Luck
Tina1215 - just thought I would upadate. I last posted monday around 1:00. At 6pm (same day, Mon)I got a call from the Docs wife wanting an update on my daughter and if she was any better since she was on the antibiotics ( prescribed last Thursday ) When the nurse called to prescribe these she told me at that time that my daughters biopsies from her scope the day before were clean. I asked her why she was to take these and she told me that sometimes the combination of the two drugs help with abdominal pain.I called another doctor that I was taking her to the following day and he told me not to give them to her if the biopsies were clear. The doctors agreed also when we were at the ER on friday. Back to 6PM Monday. The doc's wife informs me that the biopsies were not clear, out of the five that were taken she had three that were positive for colitis. I was livid!!!! She has been taking the antibiotics since Monday eve and today is worse than ever. I loaded her in the car and drove her to the doctors so he could see for himself the shape she was in. He took one look at her and said she needs to get to a hospital. Oh this gets better!!!!! He sends us home to wait for a call from the hospital. Guess what?? All the beds are full and they can't get her in until tomorrow morning at 9am. I know I am venting, sorry. I need to have a really good cry, but staying strong for my daughter. Colitis can be very serious. I believe there is something else going on. She has never had diarreah or blood in her stools. Like I said before she was first diagnosed with severe constipation. Just thought I would let you know we are from a small town in Ga. The hospital is in a big city, hope and pray they don't send us home in pain. How are your daughters Doing? I hope we all find the answers we need before we go insane. I will keep you posted. Thanks for listening Tina
Novaleesa - Tina,
first of all, please, do NOT be sorry for venting here. That's one of our purposes here. We are invisible shoulders to "cry" on and to lean on when you need it. I think I can probably say for everyone who writes in here that we feel for, we ache with, and we give support to you and to each other. Please, do send your daughter good wishes and positive thoughts and prayers from those of us who do so. I know I hope she recovers soon and looks back on this one day as a real hard time that she toughed through and became a stronger person for it. Thanks for sharing and keeping us updated. When you have time, please let us know how she's doing.
Clarissa
Scamelo - Janek
My daughter is the same. Still stomach pains. Sometimes after a chiro visit its a little better for a day or two. We go see another pediatric gasto May 15th. I honestly still don't know if hers is physical or mental because she did have some anxiety before this started. They say it can settle in one spot and get bad. Pediatric friend of ours says it could happen. I just don't know because if its that how long can it last? The meds don't seem to help.
When I go the 15th with her I am going to ask for more tests, many recommended her and see what happens.
How is your daughter doing? Any other symptoms.
You can always email me also.
Janek1969 - They too put my daughter on anxiety meds and pepcid...none of it helping and she has been going to talk to the therapist (she is thrilled about this) but we are following everything they want us to do. I it just came on so sudden I have such a hard time believing its anxiety or depression....i think now for sure she has a bit of both like I have said previously...and hey ....we live in So. California so I think everyone can use therapy :) the pain is still right below the breast bone in the middle of the ribs...it doesn't ever go away it just gets worse at times. SHE is being bounced around between doctors and I don't know what to do. I don't care if she goes back to school this year but I want her to be ready and focused for next year. Anyway I am glad I can VENT hear and virtual scream and cry I know I am tired of second guessing myself thinking about it talking about it ...I am just tired...I hope we all get answers soon.
I will emal you scamelo soon! :)
Scamelo - My daughter was on mild meds and talking to a therapist before the stomach problems started. I am not sure what to think anymore. Everyone thinks its anxiety. Yes it could be, but with therapy and meds, shouldn't it get a little better? All I want is a well daughter, and that will help me as I have developed anxiety from all this myself.
I have to say, since she has Mono November of 06, its been downhill ever since. She is now so tired also, but I think its the medicine since we increased the dose a few days ago and she is more tired than ever. Have a call into the dr...
Hh61002 - Hi, I am sorry for your daughter's suffer. If all of her test are normal, could you try the acupunctrue treatment for her? I am an state-licensed acupuncturist. Where do you live? I maybe give you a help if close to my location. Or I can intreduce you to someone if you live close to them.
My email is shclinic@gmail.com
Janek1969 - I am in San Diego CA
It would take some convincing for her to try but I LOVE accupuncture!! Where are you?
Hh61002 - I am in indianapolis, IN. It's too far for you. I think there is a lot of acu-clinic in San Diego. You can first try non-needling acu-treatment if you think she is not ready for needle insert. Or herbal medicine? I only can provide herb medicine for you if you think you want to try.
Janek1969 - Thank you! I will definitely consider that one of my good friends is an herbalist is that right? and hopefully will concoct th perfect remedy. I have actually never hear of non needling ac-treatment...is that like acupressure? I hope you are close to one of these families and can offer some relief! Thank you for your time and your response! I will take any help I can get!
Hh61002 - The acupressure is one of non-needling acu-treatment. Also you can ask cupping and moxa treatment. Hopefully you can get help from trying these. For herb medicine, I think your friend may first do the diffrentiation diagnosis to your doughter then can make the specific herb formula for her.
Nyscof - I didn't read all the answers but my daughter had stomach pain from a dairy allergy. When she stopped consuming dairy, her pains went away.
Some people react the same way to wheat, gluten, fluoride or some other allergen.
You might want to seek out a holistic physician who looks for that stuff
Smbarnett - youe daughter might be allegeric to gluten. My friend was dealing with this about two months ago, doctors wanted to remove gallbladder, and she was advised to get off gluten first. Have her tested for celiac disease, more serious than just gluten alleries, but could be that also, and is treated by staying away from everything w/ gluten, ckeck your shampoos, lotions, and everything you put in or on her body for gluten. She should start feeling better in a day ir so. Do this for a month, and then if she tries something w/ gluten she'll know in about 24hrs if she has a reaction to gluten.
Lalvarez1491 - Well, as for the chronic stomach pains, it could be neurologic pain of unknown cause, it could be fibromyalgia syndrome (FMS). If these episodes of chronic pain are follow by purplish or discolored, cloudy urine then it could be pyphoria. That cloudy urine, is a classic sign of pyphoria.
Pscott04 - Any history or trauma to the head or neck? Spine or shoulder? Or tension in these areas? Vagal nerves which innervate the stomach can be compressed by spasm or old injuries and cause over reactions of spasm in the gut. I am a physical therapist treating a 14 y/o with similar problems. We are getting some gains with decreasing tension in the nervous system. Working this an Osteopath or accupuncturist? Also google abdominal seizures to see if symptoms fit.
Scamelo - My daughter is getting a small amount of relief with a chiropractor, so it could be something like htat.
Pscott04 - Look for a physical therapist or osteopath (that's a true medical doctor with D.O. after his name not M.D. It needs to be one that does hands on work. Whoever you can find that does craniosacral work, or visceral work. Or mention vagal nerve compression to the chiropractor you are seeing...
Pscott04 - also, disruptions of the nervous system such as I'm mentioning would also increase anxiety. What about meds such as Neurontin, Lyrica which are used for nerve pain or Cymbalta used for depression and nerve pain/
Scamelo - My daughter was on prozac, is now on wellbutrin, small dose, half a pill. She is getting some relief from either chiropractor ( whether physical or mental) or perhaps the wellbutrin. Idon't know what is helping more, but will take whatever we can get.
Phenard - My 17 year old daughter has been going through this for over 6 months. She has had ever test and procedure done to her that you can imagine. Missed 40 days of school since Nov '07. I finally switched GI doctors and the first time the new doctor saw her he said to take her completely off of dairy products and put her on Levsin before meals. I can't begin to tell you the difference this has made! He explained that once the body stops growing it doesn't need the milk and some kids develop an intolerance. I didn't think something as easy as removing dairy could have such a profound affect but it has! Going non-dairy hasn't been easy but it can be done. I hope this helps. Ask your doctor about it.
Phenard - I just read some of the other answers. My daughter too was told that it was anxiety or all in her head. I was so sick of hearing them tell me that. I was ready to scream at the next person who told me that she was normal and nothing was wrong with her except what was in her mind. They did not see her day in and day out curled up on the couch crying because she hurt so bad. I had taken her to the ER so many times that I lost count. It got to the point that she refused to go because she knew that they weren't going to do anything and she didn't want to waste our time just to hear another one of the ER doctors tell her that she was fine. I truly feel for you and hope that you find out what is going on with your daughter and soon.
Phenard - My daughter said that she if your daughter would like to talk with her or email her that she would be happy to talk with her. If she would like that I can give you her email addy.
Massmomof3 - When I was 16, I had a bad bout of mono that caused me to develop severe stomach pain. But actually it was my liver - I had hepititis caused by the same virus that caused the mono, which is the Epstein-Barr virus. It took them forever to diagnosis it, and I was having severe symptoms. I was diagnosed with Gastritis about three times.
Once they diagnosed it I was on bed rest for awhile and also took a lot of B vitamins. I continued to have trouble with my liver for a while and to this day I do not donate blood and have to watch what I drink (alcohol).
I don't know if this could be the problem with your daughter, but given the fact that she had mono, there is a chance it could be her liver.
Massmomof3 - I want to add - I was chronically tired for about two years after the mono/hepititis thing. It was basically like chronic fatigue, also caused by Epstein Barr. Also, I also remember being anxious and depressed - kind of vicious circle when you're tired all the time - does the illness cause the depression, or does the depression worsen the illness? I say treat her like she has a chronic illness - work on gradually building her stregth.
Massmomof3 - Reading back over my first post, I want to clarify - I was misdiagnosed with gastritis three times.
Also, I will add that the pain was right in my midsection, right below the ribs, and pretty constant. It never felt like a typical stomachache. It just hurt.
Scamelo - Thank you Massmom. I will ask new ped gastro next week. you have so many of the same symptoms as Melissa.
was your pain every day also? was it dependent on food?
Thanks
Massmomof3 - Well, it was a long time ago (I'm 41) but I think the pain was pretty constant. In my case my symptoms suddenly became acute (after a week or so of pain), and I was unable to hold anything down, even water, and became severly dehydrated and was hospitalized overnight. But I don't think that always happens with hepatitis. They still didn't figure out what was wrong with me except that they did discover my mono. It wasn't until a day or so later that my pediatrician noticed my liver was enlarged during yet another exam.
Ortner - I've read through all of these and their are many because stomach pain is so hard to dia. however; I will tell you we have just in the last 4 months been through the exact some thing all the same test you have had the biopsy and even a food allergy doctor for testing.
What help us was going all organic because I started doing research on all the favorite foods my daughter was eating and knew that it had to have a factor in all of this. You will be amazed at what we consume on a regular basis that are toxic for our bodies. Several of the preservatives that are allowed in food in America are not allowed in Europen countries because of such bad side effects. I'll list a few but you"ll know more if you just research exactly what she is eating (in the ingredients) on the boxes. Red 40 , Yellow 5 , Benzoate, ( all of the cause mood swings in children also) high fructose syrup, aspartame (usually in diet drinks or mixes added to water). These are the main ones but the easiest way to see is to buy all organic for a week and see if it helps. My daughters results were immediate and it has returned unless we eat out several days in a row. You also have to really watch condiments like ketchup, pickles
things like that. May God Bless You and Your family
Luvmypaxton - Scamelo-
Have you looked into "slipping rib syndrome"? My brother in law has this. It causes terrible pains in the rib area. He ended up in the hospital more times than I can remember. My sister actually had to go on the intranet and do her own research to figure out what MIGHT be going on with him.
He had all of the tests done. At one point the pain got so bad that he passed out and 911 was called (this was the first time we realized something was wrong)
Here is a website...
http://www.prolonews.com/slipping_rib_syndrome.htm
Anyway, it's just something else to check out.
Scamelo - I have to say, this is the best board I have every posted on. A huge thanks to everyone. I had never heard of t his board and had posted on many others, most with little or NO response.
I am going to be checking out most of what you guys wrote. Thanks so much and keep it coming.
daughter is a little better with chiropractor, so it gives me some hope.
Janel - Hi Sacmelo,
Your nightmare is mine right now too. My 16 yr. old daughter started having cramping on and off Jan. 2007. Had a few bouts of diarrhea and would vomit in the a.m. before school, sometimes before eating or after eating breakfast. After getting sick it was like she had the flu and .would sleep and be weak for about two days. Last year she missed 30 days of school. She had a colonoscopy, and upper endoscopy - negative to anything. She could always eat anything she wanted but we started to see a pattern of getting sick or cramping with dairy and wheat. Some days she would never have a problem with the dairy and wheat. Nov. '07 her b.m.'s started reducing going from two a day to 1 a day. Then little by little she was getting more constipated. We pushed water big time! No help. Feb'07 Gastro did catscan and said she was so full with poop, gave us pills like she was preparing for colonoscopy and it cleaned her out. She felt weak but better but the cramping continued. The cramping is right above the belly button and goes in a circle. Two G.I's later, they say she has IBS. Constipation continues and gets so bad she's hospitalized for three days. They give her a n.g. tube through nose into stomach with go-lightly drip and about seven enemas later they get her clean. One day home from hospital and the pain in stomach continues all day. Also, because of the constipation she has lost the reflex to poop. She can't feel a thing and they tell us the sphincter muscle will take time to heal and we should give her miralax 3times day to keep stool soft and not let colon get enlarged again. Pain continues. Five days after being home from hosp. sharp pains in rectum start, very painful, lasts for about three weeks. This was horrible for her. Bowel movements are over the top, painful beyond belief and she can't feel to push out b.m. so she's so frustrated. Crying, screaming is the way it goes at every b.m. Rectum is very sensitive. She puts lidocaine ointment on for some relief. Sigmoidoscopy showed no fissures or roids which made me cry because I thought for sure that's what's going on and nothing was found. PAIN in abdomen has escalated to 24/7. She is now on couch or in bed in agony taking vicodin every 4hours. We know this can cause constipation but we have no choice. All blood tests come back negative. Stool sample negative, She's had colonoscopy, two upper endocopy, stomach empty test, anal manometry (showed reflex not right), Brain MRI, Thoracic,cervical and lumbar MRI. Brain MRI showed small temperal lobe white spot so nuero Dr. is investigating for epilepsy. (supposedly you could get epilepsy seizures in the gut so he put her on epilepsy drug, no change) This is a long shot. EEG Brain Scan came back normal. Yesterday went for reflex nerve test, don't know results yet. She's also had three abdominal x-rays, 1 chest, and one lumbar x-ray. She has canker sores in mouth, sores on head and a new swelling about 8 inches above tail bone which x-ray showed nothing. Gyno said doesn't fall into symptoms for endometriosis (sp) Test for crohn's, celiac parasite,inflammable bowel disease,mono,epstein barre, lupus, hashimoto's, pernicious anemia, hirshbongs diesease,colitis all came back negative. I'm ready to scream. They are now telling me the brain could be not sending the right signals to the abdomen, therefore pain. Want me to see pain management people. I'm at a loss but we're seeing fourth G.I. This week for another opinion. I've even contacted the mayo clinic and am in the process of sending a letter for them to review. She also is coming up on the end of her 30 day yeast cleanse diet. Candida test was just a little elevated so we put her under the health & wellness Dr. on Diflucan, nystatin, vit. c,b,omega 3, magnesium, digestive enzyme, probiotics as well as cut out all dairy, gluten, sugar and buying organic fruits and veg. THE PAIN is still constant. She also had been diagnosed with OCD since she was seven but has been on the medication Luvox for the last five years and is doing great in terms of the OCD. We're even weaning her from that med to see if it could be something to to with that. Docs keep telling me anxiety it's a bunch of garbage. This week she'll be seeing another pediatric nuero. and motility spec. as well as having small bowel series which I had to fight for. I'm also trying to get them to give her a sitzmark test to see food transit in the colon. She's gone from being a independent 16yr. old to totally dependent. She was pulled from school and can't even concentrate long enough to do much of anything. Her days are spent just managing the pain and waiting for the next vicodin. Sorry this is soooooooo long but I thought you might be able to pick a few things out that you could talk to your Dr. about. I'm not giving up and will continue until I find a freaking Dr. that will understand what it's like to take a child home and just watch them suffer!! My shower is filled with a million tears. If I can be of any help or you need to vent with someone going through this I'm here. I feel so bad for anyone going through this. Please let your daughter know that she's not alone and to be hopeful that we will find a cure for this. Janel
Scamelo - Oh my Gosh Janel. I feel for you and your daughter, how awful. You are much worse of then we are. My duaghter is in pain, now better, but not like your daughter. We went thru the constipation thing as well, but luckily that got resolved. I think it was the prozac she was on and is now off.
Your poor daughter has been thru the mill. I can't believe t hey can't find what is wrong.
I will be praying and thinking of you and all the children on here who can't seem to get help. With that much pain, I don't think it can be anxiety, that just does not seem right.
God Bless you guys.
Janek1969 - Janel hang in there you and your duaghter are in our thoughts and prayers....hopefully this will be the hardest times in our baby girls lives and soon they will be on to bigger and better things. On the up side it does sound like you have fantastic doctors that are willing to run/try anything and everything to get to the botoom of this. We are at a stand still and I just want to run a way. (sorry I haven't email back scamelo I am in a hole) because they CAN'T find anything I was told it's a chemical imbalance in her brain which I know is BS......we do know our girls better..... I thank you for all of this information but I am so sorry that you are all experiencing it. Hang in there and know you have a place with new friends...I am glad to have all of you...I
I understand anxietey...chemical imbalances they just don't present themselves so fast and furious and I don't know where to turn anymore.........I was told my the doctor to sit and wait.....let some anxiety meds kick in.....I am past furious!
Dee1047 - Could not hurt!
Drink 1 teaspoon of apple cider vinger mixed in 4 ounces of water.
It always helps with my stomach pain, with no side effects.
Best wishes
Dee
Jmangin - Is she allergic to gluten? My boss was having the same problem, spent a ton of money with doctors, tests, diets, etc.
Then somebody mentioned a gluten free diet and it took care of all his problems. All he had to do is cut out any baked goods with flour.
Good luck!
Sirkel - My 10 year old son(child #2) had the exact same thing. Many days were spent in the hospital. One doctor told us it was stress due to mom being pregnant with child #4. FINALLY they took a sample of his stomach lining. He was diagnosed with eosiniphillic gastroenteritis. Basically his stomach cells would become inflamed after eating certain foods. It was described to us like how your nose becomes red and itchy when you get near some seasonal allergies (cedar, mold, etc.). We followed a simple diet - you can find it on the internet - I remember no corn, no flour, no honey. It was amazing - after 3 days he was totally fine. And after about 6 months, he rarely had any problems at all.
Good luck, I hope this helps.
Loves2dance - I had severe pain in my stomach. I'd wake up in the morning, try to get out of bed, and clutch the area where you have your pain. It was just like yours. Finally, after no help with a course of strong antibiotics for helicobacter pylori (sp?), I went to a gastroenterologist who said, "the way to know is to take a look" and she ordered an upper endoscopy (they put a tiny videocamera down your throat. You don''t even know, since they give you a tranquilizer and then something by injection and as the doctor is chatting with you everything turns into black velvet and next thing you know you are waking up in a sunny room with cheerful nurses helping you and offering you a little tea or something to drink. It turned out I had a hiatal hernia (that means the top of my stomach pushes up through the diaphragm into where my esophagus is and so the stomach acids would irritate burn my esophagus and cause all that pain. And, yes, if not treated it could turn into Barrett's syndrome which can lead to stomach cancer. It was totally healed and I never have any more pain by being prescribed Prevacid once or twice a day. Don't let them give you Prilosec (it's cheap but worthless - it just doesn't help at all). Only Prevacid totally removes the pain and also heals the area. My heart goes out to you because if you have a hiatal hernia this is what will help you and not more and more tests. Tell the doctor and see if he will put you on a trial of Prevacid. Good luck and God Bless You.
(from aerobic5)
Spad - Hello, my 20 yr old son has had the same problems...recently he began treatment for anxiety...there has been much progress!! Also, he found that Pepto-Bismol has helped quite a bit, despite the fact that he is on Nexium. If your daughter tries some short term Xanax or another sedative, and the pains subside, your answer could be anxiety...at least you would know where to get help. My son was so bad that I had to bring him home from college, he couldn't eat and lost lots of weight.
The gastro doc told us that he has seen thousands of patients with this problem... he says that luckily, when the anxiety is treated and relived, that stomach pains also subside. For my son, the relief has been great.
Also, has she tried Levsin? I use it for my "unknown" stomach pain and it works wonders.
I pray that your daughter and the others whose children are in so much pain, will find answers and relief soon. There is nothing worse than seeing your children suffer, no matter what age they are.
Scamelo - Thanks to both of you.
Loves2dance
My daughter has been on nexium and aciphex, but after a few days both made her dizzy for some reason. Dizziness stopped after being off for a few days. you are right priolosec is not as good, but did not make her dizzy. She did have an endoscopy, one Dr. Said she had Barrett's. Second Dr. looked at the slides and said she did not. So now we don't know for sure as they contradict each other.
Spad
My daughter was told its anxiety, however she was on prozac when this happened for anxiety and now on wellbutrin. She has tried xanax to help her sleep. She has a hard time falling and staying asleep. She takes xanax and melatonin every night and some nights still can't fall asleep until 3am. She has not been physically active and they say that is why.
So far only thing helping a little has been chiropractor. Going to see another Gastro Friday.
I just want my normal healthy daughter back and wish it for all of us suffering here.
Phenard - I'm sick of doctors, hospitals and medicines! Right now they have my daughter taking 4 Elavil at night to help her get some sleep, Reglan 2xday, Levsin a minimum of every time she eats with extras afterwards if she still hurts, Prevacid 2x day, Gaviscon, Pepcid, Vicodin double strenght every 6 hours, Atenonol and Yaz. I sometimes wonder if all the medicine is masking what is really going on. All her problems started after being hospitalized in Nov of 2007 for a migraine that lasted for 11 days. They were giving her high doses of DHE and she has done nothing but go downhill ever since.
Her heart rate has gone haywire. At rest it is now around 107, if she starts to talks or just moves her arm up and then down it jumps to 120. If she climbs up 10 steps it jumps to the 160's. Then it takes a long time for it to come back down. She had to stop taking the stairs at school because she was passing out going up. Had to stop PE because she always felt like passing out and was throwing up. Then she started having the black stools which turned green and have been green ever since January except for the times that you can actually see large amounts of blood in it. And the stupid ER doctors keep trying to tell me it is only anxiety and all in her head! I'm still trying to figure out how you can actually have bloody stools and it be in your head. The GI said they were full of shit. All I know is that after 6 1/2 months of this I am sick of watching her hurt day in and day out. It is like some kind of epidemic going on here. I have checked with the school nurse (who is a friend of mine) and she said that this school year she has had two other girls with these exact same symptoms. They both had Crohn's Disease and had part of their colons removed and now use colostomy bags. How terrible for 16 and 17 year olds to going through this!
Mandy30 - Hi there,
I am now 33, however my symptoms started at the age of your daughter. I was diagnosed with everything from hepatitis, to IBS and had my gallbladder and appendix removed due to attacks. After a bad round with morphine they think they may have figured out that I have had SOD all along. Sphincter of Oddi dysfunction. I am currently undergoing more tests. Have them look into it. I did not fit into any of their categories as far as weight and age go, so tell them to check anyway. Best of luck!
Connieb - My daughter has had a lot of stomach problems from oral acne treatments, especially minocycline (it also can be formulated in slow release form as Solodyn). Make sure none of the medications that she may be taking are causing the abdominal side effects. Good luck!
Jessharp83 - i am 24 years old and when i was 13 i started getting those pains in my chest. and lower ribs. for 2 years they were doing tests on me and kept telling my mom it was only gas pockets. i couldnt walk, lay, or even sit down the pain was hurting so bad. i was taking a whole lot of different kinds of medicine but none of them helped. finally after 2 years with the pain my mom told these doctors something has to be done about the pain. well they did an ultrasound on me and they found out my gallbladder was so inflamed from having gallstones. 2 weeks later i was in the operating room having my gallbladder removed. i even got the gallstones in my home in a jar. the doctors said they couldnt believe nobody figured out i had them for 2 years. i really think you should have an ultrasound done on your daughter to rule out gallstones. that was the only way i found out about mine. i hope this works.
Angela1976 - My guess is Endometriosis....
I have suffered from the unfortunate disease since I was 18. I had major stomach pain....the doctors ran all knids of test and finaly when he couldnt figure out what was wrond with me....he basically threw his hands up in the air and said I have Irritable bowle sysndrome. Yea right.....Next guess Doctor.....................
I always had cycst on my ovaries so when he did an ultrasound he said everything was normal. I could not stand the pain...I would end up in the emergency room doubled over in pain....in fact they got to know me very well over the years. When I first came in they would bring me back and use a low dose of tamadole on me....and it did nothing for me....so finally they gave me morphine. It was the only was to make the pain go away. Now when I have to go into the emergency room....Im now 32 years old....they look at my history on file and go straight for the IV line of Morphine. To make a long story short...I begged and begged my doctor to do a laporoscopy exploritory sugury to see what was wrong with me. He refused still thinking I had irritable bowel sysndrome....needless to say I changed doctors and went to the Mayo Clinic to see a specialist. She reviewed my chart and my history and two days later I was on the operating table getting my first laporoscopy. It turns out my pain was caused by endometriosis. She removed the tissue bu laser and cleaned up my uterus as best as she could. By this time...it was in my uterus...behind my bowe...it was everywhere. After surgery I was in remission for about 6 months. After about the 6th month I could feel the pain coming back. See endometriosis is cause by the sheading of the uterin lining durn menstration so with every period...the scar tissue would begin to build up and before I knew it I was back in for surgery 6 months later. I have had a total of 7 laporoscopies...and I will continue to have the surgery yearly until I have more children. Someday when Im done having children I will have to doctors perform a full hystorectomy so I will not have to deal with the chronic pain.
Anyways...I thought I would just share my story....sometimes they can not find out what the problem is without doing exploritory surgery. Laporoscopies are a sameday procedure and the recovery time is short. Best wishes....if you dont trust or feel comfortable with what your doctor is saying...then change doctors immediatly.
Erin55 - Hi
your story sounds just like ours. My daughter is 15 and has had severe stomach pain all year. At night she has trouble sleeping
and it hurts first thing in the morning and then all day. She had a kidney stone removed in March and we thought that would be the end, but the daily pains continue, she has been on prevacid, ibs medicine, had ultra sounds, ct scans, lab work, saw an allergist, and are seeing a intestinal doctor currently, everything keeps coming back normal. The allergists did discover polyps in her sinuses and wants to treat them with prednisone to shrink said the post nasal drip may be causing stomach pain, we will see
Cdgrant - I found this as I was looking at the singulair side effects. My daughter's sever abdominal pain which she has had for many years and been through all the tests which have found nothing, has signifoicantly improved since she's been off the singulair. Check her meds - most doctors have no idea about any of this.
Phenard - You would think that there would be SOMEONE out there who could help all of us. I was talking with my orthopedic surgeon about my daughter and he probably has the best advice for me. He said it sounds like she needs to see an endocrinologist and have all her hormonal items check, such as thyroid, parathyroid, adrenals, estrogen levels, etc. I am going to check with her GP and see about getting her in to see someone.
Cdgrant - My daughter had this done and nothing showed up. She's had xrays and ultrasounds and scopes in her stomach and more blood tests than you can imagine. She's been on every kind of diet in order to eliminate problem foods. She's been to every kind of doctor including several different kinds of naturopaths. Some have claimed to have cured her but she feels no better. It was only the elimination of the singulair medication that has relieved some of her symptoms.
Tina1215 - Hi I am back. Last post 4/30
We went to the hospital and were there for two weeks. Every test possible has been done on my child. They treated her mild form of colitis and treated her for H. Pylori, which they discovered thru upper EDG. She had another colonoscopy,sonogram,Xrays, and swallowed the camera pill.Numerous blood tests. All negative. Her pancreas enzymes did increase a little, but pancreas looks fine. She was in so much pain when we arrived she was put on a morphine pump,then they put her on dalodid.She was also valium,methadone. eventually these weren't working anymore so they started weening her from the pain meds, thank god. She built up a tolerence and they weren't working anyway. She actually started to feel like herself again but the pain was still there. So like a lot of you they are saying it is a chronic pain issue. Anxiety,depression blah blah blah.They basically kicked us out of the hospital on Friday because there wasn't anything else they could do. Because she layed in the bed for two weeks she now can't walk. The got her up two days before we left and with two people helping her, tried walking her to rebuild strength in her legs.Her legs keep shooting out from under her. It took three of us to get her in the house, just so she could lay in the recliner again.The sent her home on ammoxicillian and flagyl for H pylori. Cymbalta,nexium,neurontin,methadone,valuim,miralax and dycolax. My kid is a sitting drug store. I want them to find out what the problem is. I was told of a women that had severe stomach issues for years and after numerous tests, finally discovered it was mecury poisoning from her fillings. All were removed and she is now better. We go back to the GI tomorrow. I will keep you posted. Tina
Janek1969 - Hi Friends
Well low and behold I might actually have some light shinning at the end of our tunnel.....after being dismissed by the GI specialist because nothing was showing up and being told by her primary to sit it our and wait for the anxiety meds and therapy to start working ...because he was sure she has a chemical imbalance.....well obviously that didn'y and has never sat well with me and I kept fighting and begging him to run any and every test he could think of ....many in thanks to this board....we finally went in and ran food allergy (prelim) on Friday and I got a call from the actual DOCTOR yesterday and my georgeous young lady is like seriously allergic to most everything...because her symptoms were only pain and not her bowel habits were not consistent one way or the other this NEVER even was a possibility in their minds....I feel like we are on a possible road to a pain free life for my daughter.....she has an appointment on friday for a complete allergy panel and then a dietician.....keep fighting for your kids....we ARE NOT CRAZY......I actually had a smile for the first time in 5 months yesterday......and it was a simple blood test that they SHOULD have done in January....she has never had any issues with any food allergies before and like I have stated previously she was a happy healthy little girl....so they all want to think that it's something as simple as anxiety when in fact it couls be as simple as wheat shrimp soy peanuts eggs walnuts...you name it and it came on fast and furious....I will keep you all posted...My point I guess is it wasn't just one thing....like taking her off wheat....it is so many things that she loves and has NEVER had a problem with and besides pain I would have never guessed...i hope my info helps someone in some way...To be continued....
Scamelo - Hurry Jankek
I hope you are on the right path. What a relief it must be! I am so happy for you.
My daughter is much better, not totally pain free, but from a pain of 8 down to pain of 2-4.
We are no working on why she is so tired all the time.
Janek1969 - Thanks to you Scamelo I am also taking her to a chiro!
You always have a friend & place to stay in San diego! :)
Snapmills - I too have Barrett's esophagus. I have since I was 18. I don't know who your working with, but can cause severe pain.
Typically they perscribe a proton pump inhibitor such as prevacid or nexium to help with the pain - and also heal the esophagus. Make sure she's getting an EGD every six months to a year... barret's is the precursor to esophageal cancer and as I've lived with it for several years now, it is so important to keep her healthy and monitor this.
NEVER SEE A GENERAL PRACTITIONER for this... call your a children's hospitol near by and get in with a practitioner or have them recommend someone.
Also screen for Chron's or Ulcerative Colitis. I have the latter - and it causes extreme pain... Please, please, please check with a specialist.
Mrmd - Does anyone know how to stop receiving email notices each time a new response is added to this thread? I would appreciate the help.
Jwood4 - My daughter experienced the same pain for about a year. She had her gallbladder removed just over a year ago. Lots of abdominal pain. Also, before her diagnosis, she went on an extreme diet change (vegan)and lost weight fast. Emotional stress and the weight loss both contributed to her gallbladder failing. Just a thought, god luck.
Lsalmonzhu - Hi. Just found this string of conversation and it's taking me waaaay back. From reading all these emails, I can offer this: at 16, I was diagnosed with serious ovarian cysts(treated unfortunately by heavy-duty birth cont. pills); 19 Hepatitis, at 21 diagnosed with peptic duodenal ulcer (put on bland diet in those days for 2 years), at 28, misdiagnosed with Hodgkins (by a hospital lab!) at 30, misdiagnosed for a full year before proper diagnosis of endometriosis which turned into an endometrioma (when the traveling lining you've already heard about lands on a nearby ovary and becomes a "tumor") removed immediately in ER. Such SEVERE pain and nausea, 3 times to the ER where they kept saying "since you're not pregnant, it must be gas, because you are way too young to have endometriosis". Had most of the ovary removed. Pain gone forever. Diagnosed at 40 with IBS, what I find to be a totally controllable problem , and here I am, 52, had a surprise baby at 46 even after all those reproductive issues so young in life, but still having the IBS stuff when I am careless. It's no big problem for me to be honest.
Here is what I REALLLY think, Scamelo...your daughter sounds sensitive both physically and psychically...she may be manifesting everything from anxiety to pressures in your family life (if there are any) , to changes in hormones, by stomach problems. I was chock full of them since about 6. I presented to the world as a sweet, smart, sensitive ,fun kid, but on the inside, was full of knowing a little too much about life too early,worrying, and never wanting to cause any problems since everyone saw me as just fine. Popular, good grades, etc etc. BUT, as I think my history and so so many of the other posters here seem to be tying together, stomach and abdominal/possibly reproductive manifestastions in young people absolutely can be tied to internal stress, ie how They uniquely process the world, not external obvious stressors! This is not to say the stress IS the pain, of course, but the way she handles Life in your family, in her world, may just be expressed by her body in these areas and with these troubles. Though endometriosis is not "stress-caused" I can guarantee that my teen body and spirit were hyper sensitive which could have been "causes". Ulcers at 16 in those days? Stress-related. IBS? Stress-related. I have had this whole constellation of stress-related rather serious things.
Now, what interests me to the hilt is that the chiropractic is helping. Even if it helped for a minute, that is so far, the only thing helping. This is really key! It is helping! Good of you to wonder if it's mind or body or both. I'd say both and, having been to chiros for years and nearly marrying one, i can tell you that being a good chiro patient is one who also "helps" in their own care. Good chiros count on the patient's own communication of the symptoms and, most important, treatment requires the patient's own commitment to fully participating while in the office and to follow-up work at home, right? Therefore, being a chiro patient may in fact give her the outlet she needs to express what's ailing her. Chiros read patient-led info deeply and the patient can see they are making a difference in their own health vs with many western doctors whereby your own insights and stories are never heard or requested. You walk out feeling so dependent on THEIR diagnoses, THEIR knowledge about illness. I do believe this opposite aspect of chiropractic is actually at the heart of why it can work...patient engagement in their own healthy progress with each visit.
You have insightfully mentioned lack of physical activity,that's another truth. Lack of activity brings depression, and IBS symptoms in many. Cyclical. When I was diagnosed with the IBS, the gastro dr said simply "I'm purposely NOT going to prescribe any meds to you because frankly, I'm sick of doing that. Instead I'm going to tell you that if you exercise, sleep and drink water, you'll be symptom-free". I was shocked. It was 100% true and when I get the symptoms, it is inextricably tied to my falling off the cart in one of those areas.
So, those are my 20 cents on everything here. You are one incredibly dedicated and educated bunch of people. I'm so impressed, and found so much insight into my own string of problems in the past by reading the strings you were all connecting across your postings!
Stay with the chiro, listen to what your daughter says, keep the med tests coming just as base information, check for endometriosis(sounds very possibly hormonal!!) as soon as possible, get her walking and exercising and sleeping (sleeping will come from being exhausted by fresh-air exercise) and give her warm water as often as she can still enjoy drinking it. I'd take her off the sleep meds and try just about anything else. Help her to EXPECT and hope for health. To focus on the possibility and do try to find others who can counsel her in case she is really wrought over something she can't easily talk about. It's such a hard age.
Oh, one last thing, since you are already open to alternative stuff, and this will be really "woo woo weird" to most, we use self-healing with my 6 and 7 year olds . I did it since 5 my mother says. It's amazing. We just imagine a color of choice (or it could be a sound, or an image or whatever is EASY for her) "washing over" the affected areas for at least a minute or more, and this is how we pass through numerous ailments over a week's time. We have taught this to many other families. I can't say enough about it. My kids do it so quickly now that I can't even get to their side in time after a fall or a stomach ache. They literally close their eyes, do this and run off. It's incredible, but it does require that the person WANTS to be free of the ailment, meaning that they want to be free of the attention to and from the problem. She may not be able to do this if her ailments are tied to emotional stressors she wishes would resolve in her life but feels powerless to help with.
Best to you and all of you!
Leslie
You'll find the answers!
Leslie
Icare4crisiscare - I have had these same symptoms for years with same tests and have friends with more of the same. We are all now symptom free, not from the exact diagnosis, but from very similar patterns of being properly diagnosed. The diagnoses for these abdominal pains just below the sturnum, under the rib cage, sometimes radiating to back between shoulder blades, sometimes to pelvic region, even thighs and hips...the diagnoses were all eventually properly made through laporascopic surgery, sometimes which was meant to be exploratory and other times which was meant to look at "other" problems and the surgeons just happened to "see" what the problem had been all along. I have talked with many of my past doctors who will now admit to me that there are very few diagnostic tests that show things like chronic ovarian cysts (we're supposed to have cysts on the ovary each month, right?) Endometriosis is another biggy. They just don't find that until they go in and look around. Through laparoscopic surgery I was diagnosed with ovarian remnant syndrome (I had had total hysterectomy 2 yrs prior and my ovaries had grown back!) No dotor would believe me when I told them I felt like I was ovulating and cramping again! Not until the laparoscopy anyway. Also through laparoscopic surgery I was diagnosed with instistial cystitis which is a bladder condition. I never would have thought I had a bladder problem except that I went to the bathroom a lot at night and I always had an unexplained clear discharge. I was told that the pain from interstitial cystitis radiates throughout the entire abdominal, pelvic region and even sometimes to the hips and thighs! Since getting treatment for this I have NO pain anymore. I think there is something called institial nephritis too that you might want to look at, but my main point is that I was told over and over again that all was normal...all tests negative...until they went inside to have a look. With me and everybody else I know with this type of pain, I personally believe it CANNOT be properly diagnosed without laporoscopic exploration. I know this can be scary for parents to think about with there children, but I cannot tell you how simple laporoscopic exploration is compared to all of the other tests and the chronic pain your children are going through.
by icare4crisiscare-Thursday May 22 at 3:50 pm
Janel - Hi Everyone,
An update, My daughter is still in a lot of pain all day. The pain is still right above the belly-button. Stopped the miralax because of bloating, now using Milk of Magnesia. Got throught the 30 day yeast cleanse and won't be introducing wheat,dairy or egg for another month. Don't see any change with the diet.
For any of you who have children with trouble sleeping, try two 25mg.tabs of Benadryl. Give 1 hour before bed. We tried everything and this worked. Chamomile tea great for relaxing before bed.
For anyone with throat reflux pain. Our Doctor gave us a mixture of lidocane and mylanta (the green monster) to see if it would help with her abdominal pain. It didn't help the abdominal pain but it really numbed her throat. Heating pad has been a blessing.
My daughter has been in tremendous pain for the last two weeks. The Doctors wanted her off Vicodin and Darvocet so we had a rough weekend. On a scale of 0-5, 5 being the worst she was a 5/6 Friday eve and wanted to go to the E.R. twice. Doctor advised me to keep her home because they would just put her on a morphine drip and then we would have to do the drug withdrawal again in a few days. Got through the weekend but it was terrible The anguish I saw while my child suffered was beyond words. Her pain is holding steady at a 3.5 and if she moves too much, the pain goes to a 4.
Today my daughter swallowed a pill with small rings in it. She will be x-rayed in 6 days to see if any of the rings are still in her digestive tract. This is called a sitzmark test. If the rings are no longer in her system, then that will show that her muscles are working well. Her bowels are still not working right.
I am now pushing for the laporascopy and I feel that this is the only way to really see if anything is wrong. She is ready to do it. A friend had it done has a small scar, they found Chron’s and endometriosis even after many tests came back negative. Saw neuro-psych. Dr. yesterday and he said 60% of G.I. problems are due to subconscious problems in the brain. Not enough research to pinpoint what is really going on. He said hormones could be a cause in pre-teen and teen with G.I. problems and hypersensivity to stress. The patient can feel like they are handling the stress but subconsciously they are making there bodies and organs sick. Eventually the body shuts down. He said he had normal healthy patients one day actually become paralyzed. They had to take off of work and just rest and after several months they were back to normal. He gave me something to think about, after all, stress can cause stroke and heart attacks as well as many other ailments. Your all in my prayers, I’ll let you know how the test goes. I'm now looking into accupuncture and possibly seein a pain mgmt. Dr. (I hate to do this but may have no choice) Everyone hang in there. Hugs to your kids. Janel
Patientadvocate - My daughter suffered with stomach pains since 3rd grade. She would get worse in the afternoon (after lunch). If she went to the nurse at school , the nurse thought she was trying to get out of class. She would go to bed with the pain and many times wake up with it. The doctor said she had acid reflux. She is a freshman in high school and I finally took her off dairy products. The pain disappeared. If she has ice cream or milk, the pains return. She has determined it is definitely dairy and avoids it or suffers. The doctor still won't acknowledge her dairy intolerance. This may not be your daughter's problem, but keep trying to find out what is causing it. You are her only advocate because the doctors will dismiss it unless you continue to pursue an answer.
Janel - We have been off of dairy for two whole months and don't see a change. She had blood allergy test and showed sheo was not allergic. Next week we're doing the skin allergy too, we want to be sure. The two upper endoscopies showed no acid reflux nor did the barium. Very frustrating. Thanks for the ideas, keep them coming!
Scamelo - Janel
What state are you in? Are there any good childrens or teaching/university hospitals that you can go to.
I can't believe that they have not found something yet with your daughter. I really feel for you guys.
They have not found much with my daughter, but her stomach pain is so much better. It is still there but very liveable, not like it was back in January where you could see the pain in her face.
She is off the wellbutrin because it might be what is making her so tired ( not sure yet) but if she gets peppier, she might be able to make it to school for a week.
As you can see from this thread, it can be so many things. What you need is a good dr. who can put the pieces together. With my daughter, anxiety may have played a roll, but your daughter has symptoms that in no way can be anxiety, so they need to find something soon to help her.
Keep on trying and will be thinking and praying for you guys. I wish we all had answers.
Scamelo - Janek
I visited San Diego once a long time ago (80's) for a day! It was lovely.. If I am ever that way I will let you know. If you're ever in NJ, let me know.
I hope you get some answers with your daughter. I hope its something as simple as a food allergy. Let us know the results and if a diet is helping. Is the Chiro helping at all?
Janel - Scamelo,
Great news that the pain is a little less for your daughter!!
We've taken our daughter to see two specialists (G.I. and Motility) at TX Children's Hosp. and they are now consulting with a third. We're about 45 min. outside of Houston so this is the best teaching Hosp. around.
Yesterday my daughter took her first shower by herself. She was in a lot of pain but actually was able to wash herself which is a big deal. Toward the end she was sitting on the shower floor, crying but at least she did it and dried herself off too. Yeah!!! Interesting note, since the night when the pain was so bad she was screaming to go to the E.R. the pain has shifted for the first time in months and now is about level with the belly button and just a tad lower. She was complaining of her lower right side hurting too and is waiting to get the period. Remember I told you all it only lasted for a short time.
I feel really good about the energy level rising a little and hope it continues. She is now totally off of her OCD medication and aside from vitamins she's med free so we'll see. Having been diagnosed with OCD has somewhat labeled my daughter. Now that all the tests are coming back normal they are starting to shift that this is somehow anxiety/stress caused yet they have no answers how to treat. I am at the best Hosp. here and they don't have any answers for us. They told us that they haven't seen anyone like her in a long time.
I really hope your daughter can get back to school even for a few days because it would make her feel so much better. We end the first week of June here in TX so school is done for us.
Thanks for always letting me vent hope I can return the favor.
Hugs, Janel
Nicki1023 - Someone mentioned autoimmune diseases...one that does affect the bowels is Celiac...an intolerance to gluten...gluten is in wheat, oats and a few other things...i only know this because I have been having similar problems...especially pain in rib area...i am now eating a gluten free diet and am feeling much much better...i was very frustrated and feel for you and your daughter. My drs are testing me for Celiac which apparently is not the easiest thing in the world to test for as some of the tests are not fool proof. Hope this helps.
Spad - Hello, Scamelo and Janel,
Have either of the girls had their spleens checked? My daughter had Epstein-Barr (Mononucleosis) and Chronic Fatigue Syndrome when she was 7. She is now 18 and complains occasionally that her "spleen" hurts her...she also has re-occurring CFS.
Maybe the spleen is enlarged?
Spad
You123 - I didn't read if your daughter was on any other medications. My daughter just went through a very bad experience-headaches, severe abdominal pain (near spleen area). Couldn't sit still in class due to pain. Had other symptoms-when the symptoms were all put together, they didn't make any sense. Had blood work and US of abd done. All normal. Took her off Singulair and her pain went away completely. If she is on any meds, esp. Singulair, I would look at them closely.
Good luck
Cdgrant - That is exactly what I said about my daughter. No one should be on singulair - it has way too many side effects. Other meds probably have similar side effects and doctors have no idea.
Cdgrant - My daughter had mono in Grade 9 and was diagnosed with Fibromyalgia in Grade 12. Spad, close to what your daughter has had - my daughter is now 20. Do you know that your daughter's spleen is enlarged or you're just thinking that is it because of her history?
Scamelo - My daughter has had CT scan and Xray of abdominal area, spleen was normal per Dr's. Her stomach pain is so much better, but now we are dealing with not sleeping and very tired. She just has a new round of blood work including thyroid, Blood count and hemoglobin, ESBarr and more and all were normal per Dr. office.
Margareta - I'm glad to hear that some of you have found some relief. I recommend a good naturopath, one that specializes in gi issues. I am in my 40s and 5 yrs ago started having a lot of stomach pain & diarrhea. The pain sometimes was in my abdomen, other times in my stomach & rib area. I had endoscopy, colonoscopy, CT scan, celiac blood & intesitnal sample and everything was normal. MDs called it IBS - which just means they can't find a reason! I finally found a wonderful naturopath who tested my blood for food allergies & tested my stool for bacteria. He found I had food allergies/intolerances to gluten, dairy, sugar, bananas. I could never identify the allergies myself because it can take 2-3 days for your body to react to a food. Just because you test negative for celiac doesn't mean you can't be intolerant of gluten. I had eaten these foods for years but somehow my body started becoming intolerant. It took months but after avoiding the foods & taking probiotics & herbal antibiotics it got much better. I now can eat some of the foods some of the time. But the upper stomach pain took the longest to go away and I had rib pain with it. Naturopaths look at things much differently, and their definition of "normal" is often different than an MD, which can help widen the areas they look in. MD's seem to be very limited in their thinking once you test "normal" and automatically want to chalk things up to stress. Another thing that helped me was gentle yoga. The constant pain can make your body tense up and make it worse. Gentle yoga & meditation helped relax my body and lessened the pain. I hope things get better for all of you!
Bhcolumbiasc - Have to taken her to see a chiropractor sometimes your spine can be pushing on her insides. I know this may seem weird but it is worth a try. If you go make sure to look up one from Palmer's Chiropractics College they are the best trained chiropractors in my book. Good luck and i hope your daughter feels better soon.
Spad - To: cdgrant
My daughter's enlarged spleen started at the time of the mono, it was diagnosed by her doctor. I have fibromyalgia, and I too had Epstein-Barr/ Mono, I hope your daughter doesn't have a true case of it. I am into my diagnosis for 11 years now, it is not easy to live with, but the adjustments necessary to cope with it are made daily and we get by, by God's grace. My daughter shows the signs of fatigue and sometimes the abdominal pain of her "spleen", but she doesn't have the other symptoms that would qualify for a diagnosis of fibro. Overall she is doing pretty well and coping with her obstacles. I just thought I would relate our experience with Scamelo and Janel in case their daughter's pain could be related to their spleen.
Hope your daughter can overcome the fibro and mono issues. Regards, Spad.
Missyczyk - Hello, I am 26 years old and also have stomach pain everyday. I swear my husband thinks I'm crazy! It hurts in the middle right below my ribs. I've tried everything. A heating pad works okay, but nothing really takes the pain completely away. I still don't know what it is. I have also went from 150 pounds to 125 pounds. I feel like something is seriously wrong with me. I don't have insurance so when I go to the emergency room I usually get sent away with no answers. Wish the pain would go away!!!
Andlen1 - I wish you the best of luck with your daughter. My husband had chronic pain of the left side of his stomach for 5 months. After 5 months of chronic pain and 4 trips to the emergency room with no answers also all the GI tests coming back negative he had a test called the "Nuclear Egg Test". He ate radioactive eggs and they watch the eggs disburse in his stomach with a "Hydroscanner". This test will tell you if your stomach muscles stopped working. My husband was diagnosed with "Gastroprises". It was very painful and he had depression and suicidal thoughts associated with the pain. The central nervous system has a main branch of nerves to the stomach called the "Vein Nerve" these nerves operate the stomach. This is very rare condition...but I hope it helps you get on the right path to getting her better.
Shanti1983 - Not to add to your stress, but I am a 24 yo woman who has been suffering from chronic lower abdomail pain for almost three years. In the beginning I had to drop out of college because the pain was so bad and I could not lead a "normal" life...I recently graduated and still am in pain but I had to resume my studies and my life because it was too depressing to be in bed. As horrible as it is you start to get used to the pain. I don't even remember what it is like to not be in pain.
My journey with doctors have been long, hard and very confusing. Since I recently graduated, I now have the time to start re-investigate the pain. I have traveled all over the country to see different doctors and nobody can seem to get me out of pain. I was even at the famous Mayo Clinic for a week and all they could say was the dreaded diagnosis of IBS. I have had MRIs, CT scans, bowel emptying test, lower barium bowel tests, colonoscopy, ultrasound naturopaths, endoscopes, have been test for celiac disease, colitis, chrones disease, food alergies, I have done extreme food elimination diets, I have done acupuncture for two years, have seen eastern medicine doctors. The only thing they found wrong with me was endometriosis. But I have had two surgeries for endo, the last one being an excision surgery (the most aggressive kind without having a a hysterectomy) which was one and a half years ago now and I still am in pain. That surgeon said endo should be the last thing on my mind. I am going crazy because there is something wrong in my body and know can seem to figure out what it is and how to get me out of pain. Even when I have been in the ER on morphine, I can still feel it!!! I have been treated by psychiatrists and they say it is NOT is my head. Does anyone see something missing. Some test or something I have overlooked. I am desperate to get out of pain and get my life back...On a scale of one to ten, ten being the worst pain ever, I live with a steady 7 that will escalate to a ten on a weekly basis.
Jackc - As a perioperative RN with an expertise in gyn surgery I have a question. Has she had a complete gyn workup? Abdominal pain in young women is not uncommon. If I had a quarter for every diagnostic laparoscopy I have assisted on I would be wealthy. I didn't read all the post so you may have already addressed this.
Cindysjoejoe - I too lived with severe abdominal pain to the point of my marriage almost breaking up. I finally saw an OB/Gyn who did a laparsopic procedure and found out my intestines were looped around my fallopian tube and ovary. I was in and out of hospitals for 20 years hearing that is was in my head or here is some vicodin go away.
Scamelo - Janek
I am sorry the allergies did not work out. Have you tried chiropractor yet? My duaghter still has pain every day, but its much less now. Unfortunately she had a sinus infection, and now has perhaps a stomach virus as she started throwing up 2 or 3 times a day. Have not brought her back to Dr. because two friends said they heard a long term virus ( not 24 hour) was going around. She started on Friday, not sure when to have her checked.
I had also heard that about my daughter and endometriosis, that its two high and it would not be 24 hour a day. Also that its cyclical. I was told endometriosis would be more painful certain times of the month.
I hope you get your answers soon. I still do not have great answers, but at least pain is better.
Footballmom - *My heart goes out to all of you.*
As far as endometriosis goes, the ONLY way to accurately identify endo is by LAPAROSCOPY. Symptoms may point to endo, but it's only a guess until the Dr. has a visual. It cannot be diagnosed by exam, ultrasound, or blood test. Endo can go anywhere. Once this uterine-lining tissue breaks loose from it's normal place, it can travel to bizarre locations!!! Everytime the uterus sheds, these small-to-large bits of endometrium shed, too. The resulting scar tissue can attach organs to each other which causes unbearable, constant pain, especially when the uterus becomes attached to the bowel wall, causing pain during the normal movement of feces through the intestines. It can attach bladder to uterus, bladder to bowel, ovary to bowel. Endo can bend and twist any organ when the scar tissue attaches one to the other. This scar tissue is much like a spider web wrapping up its prey into a tight ball. This may or may not be your daughter(s) source of pain, but at this point, do you think it may be time for a laparoscopy? Any procedure has risks, but after so much suffering and change in quality/normalcy of life, I would ask my Dr.'s about taking a look. I am the world's biggest chicken when it comes to "going under", but I reached the limit and wanted something done. I was sick and tired of lying on the sofa, writhing in pain, missing fun, missing my children's lives, not being able to function, not being a wife, and feeling depressed. Laparoscopy is usually outpatient and the NEXT DAY I went to lunch!! I had very small spots of endo, but size doesn't matter with endo. One can have massive amounts of endo and be symptom-free, or have tiny pinpoints of it and be in excrutiating pain. Two weeks after the laser surgery, my doctor's exam showed NO tenderness remaining.
Like I said, this may or may not be the problem, but I would certainly rule out endo. It can be a horrible condition. Pain in some regions of the pelvic cavity can cause "referred pain" in other areas. Just cross this off your list....just to be sure. A GYN visit with a pelvic exam MAY yield clues.
And even if endo isn't found, the laparoscopy MAY determine the causes of your daughter(s) pain. If every non-invasive test has proven worthless, maybe an internal look could be the answers you are all looking for!!
I pray you find relief for your daughters. I know you are worried, exhausted, stretched to super-human limits. Nothing is worse than seeing your children suffer. God Be with you and best of luck. I will be praying!
Lsalmonzhu - HI Scamelo. I just checked a couple of things for you. JUST for symptoms in teens and adults (meaning that I'm not sure if the rest of the content of these websites would be recommended), and some discussions that are interesting,you may want to visit end-resolved.org and youngwomen'shealth.org. I only had time to look at those two, but there are hundreds that confirm that the pain does not have to be related to period cycles and yes, mine was" so 24 hours a day", i was taken by ambulance at last when the endometriosis had turned into a cyst-tumor like thing and exploded after months of misdiagnosis.
I'd say about her throwing up that this could be yet a new sign of whatever is up and not to assume it's the flu. I don't know, I'd get her in to see someone in case it's a new symptom.
I feel for you. I know how hard this all is.
leslie
Lsalmonzhu - HI Scamelo. I just checked a couple of things for you. JUST for symptoms in teens and adults (meaning that I'm not sure if the rest of the content of these websites would be recommended), and some discussions that are interesting,you may want to visit end-resolved.org and youngwomen'shealth.org. I only had time to look at those two, but there are hundreds that confirm that the pain does not have to be related to period cycles and yes, mine was" so 24 hours a day", i was taken by ambulance at last when the endometriosis had turned into a cyst-tumor like thing and exploded after months of misdiagnosis.
I'd say about her throwing up that this could be yet a new sign of whatever is up and not to assume it's the flu. I don't know, I'd get her in to see someone in case it's a new symptom.
I feel for you. I know how hard this all is.
leslie
Janel - Hi All,
I Can't tell you all how much I needed to read all your posts this week. Small bowel series was normal. Sitzmark test (she took a pill with small rings in it to see if they would pass over a six day period, then they take an x-ray to look if any remained),it was normal. Yeah to that because that shows we don't really have a motility problem. Third ultra-sound of upper abdominal was normal.
My daughter is looking a little better but pain is still 24/7, still a 3-3.5 every day, 5 being worst. She is starting to get a little feeling back with pushing stool out (sorry so gross) This is a very big deal for us. I'm getting her to walk more which is very hard but she's really trying hard.
You all have such great ideas. We went to see Gynecologist yesterday for the second time and she still doesn't think it could be endometreosis. She said she would do the scope a 30 min. outpatient procedure which would leave a small scar in belly button. My daughter was so turned off by her attitude and her constant statements that it probably isn't endo that she said she wouldn't even let her touch her. She also said if she finds the endo she would remove it and then put her on the pill. Needless to say, I put out a shout to all my friends for referrals and I'm seeing another Doctor next week who I hope will treat us better. My daughter is convinced that this could be endo or if not, at least wants to have someone look inside to see what's going on.
Thanks for the spleen idea but it looked fine on the ultra-sound.
Another idea about constant abdominal pain could be Porphyria which is a disease where your body creates too much hean (sp) We thought this is what my daughter had but the urine test did not confirm it but it's something all of you should seriously check out. We saw this on the show Mystery Diagnosis and thought she fit the profile exactly but it was not so.
I'll let you know how the Gyno visit goes and many thanks to all my new friends. p.s. Thanks for the great web sites to check out. Janel
Janel - Shanti,
Your story seems so similiar to ours.
Great for you that you graduated from college considering you have had such tremendous pain. I really feel for you and all of the people going through this with no answers as to why it's happening. I'm sure you feel very alone at times but hang tough. You have the strength that many people don't have.
You have had many tests just like my daughter so I really feel for you. You have a lot going for you and I really commend you for continuing to find the reason for the pain. You are not giving up which is a great trait to have. If I find out any new information I'll pass it along. I hope your pain is a little less today, your in my prayers. Janel
Bledo - Please tell them to test her gallbladder! My sister had ALL of your daughter's symptoms and finally found out that it was her gallbladder. There is a special kind of scan called , i think, a hyperscan (?) that will tell exactly if it is her gallbladder.
good luck to you
my prayers are with you
Barbara
Janel - Barbara and Shanti, Thanks for the info about the scope. We see the Gyno on Tues. so I'll find out more then. She now has a small pea size bump, to the right of her pubic hair. She noticed it today and it was throbbing slightly and when she pressed on it, it really hurt, very tender. I felt it and it might be a swollen gland or a cyst, I don't know. You can't visually see anything. It doesn't look like an ingrown hair at all. Another thing to check out at the Doc.
They tell me everything is okay with the gallbladder and if she had a problem the blood work would indicate something. The ultra-sounds, catscans, MRI according to them ruled out a problem with the Gallbladder. I think the test is the hydrascan, I'm going to follow-up on this. They are just going to love me. Thanks tons!! Janel
Janel - Hi All,
Our Health & Wellness Doctor has done a significant diet change for our daughter and has put her on a pretty intense vitamin supplement plan. She recently advised us to see Dr. John Mathias,G.I. and Dr. Robert Franklin, Gyno in Houston.
My daughter was diagnosed with Neuromuscular disease of the G.I. tract and endometriosis and Insulin sensitivity syndrome. My daughter has a mild case of endo and they are watching to see if the medication they put her on Clonazepam Orally 0.125mg 4xday(small dose) this will help with the constant spasms in her gut and cyproheptadine helps with the insulin issue. They have changed her diet cutting out all carbs and no sugar as well as going to wheat pasta and the only bread she can have is 7grain in addition to many other changes.
These amazing Dr.'s tell us that many Dr's don't know about this disease which is amazing. Dr. Franklin said many tests can miss finding endo and the only way he can really tell is by doing an internal exam and feeling the gut. He said my daughter's is at the base of the colon leading to the rectum and it may be higher up in the gut. He has not ruled out surgery but wants to be very conservative about it considering her age and that its mild.
Big changes have happened, she's off the couch, walking 1-2 miles per night, has ridden her bike and actually swam in the pool. Went to Sam's club and the Pet store with me. All this has happened since my last post which is amazing. We are so hopeful that we are on the right track. She even signed up for a Eng. class over the net to catch up on school.
The Doctors said this is not all in her head! They actually listened and understood what she was dealing with. She had an EEG test of the abdomen which showed that she has many spastic eruptions. They said its like having a pacemaker that doesn't work right. The beats of the gut are all off. They also put a lot of time into explaining that the most of the seretonin in our body is in our gut not our brain. Our "first" brain is in the gut which controls everything. They told us they can help us so I'm on cloud nine. I hope things only continue to get better. I thought I would pass this along to all my new friends. I'll keep you updated. Janel
Scamelo - Great News Janel. I am so happy your daughter is feeling better and able to function. I hope it continues and things get better and better for your family.
My daughters pain is very minimal now. Dealing with sleep issues at the moment, but stomach pain that was a 7 or 8 is now a 1 or so.
Take care
Danikayoung - I have to admit I didn't get through reading this whole post yet, but I think I have at least something worth mentioning. I'm 17 and have been battling with stomch pain/ nausea for 2 years now. My pain is also in the mid-rib cage area to upper right side. I don't vomit (but I also haven't vomited since I was a toddler, even with the flu) and occasionally have bouts of constipation and also do belch often. Otherwise I've been through the gammit of tests- HIDA scans, ultrasounds, blood work ups, x-rays, CT scans, lapriscopy, scopes, and many many more that I can't think of right now... I also had my appendix out last year, initially getting amazing results but I am now sicker than ever.
While I haven't found relief, I have had doctors mention some things to me that I think could really help some other teen girls. The major one I'd look into if I were you is a disorder called "Postural Orthostatic Tachycardia Syndrome". I was diagnosed with this disorder at Mayo Clinic in Rochester, MN. It is a disorder that affects your heart, but it can also cause extreme stomach pain. Basically your nerves don't communicate right with the rest of your body, causing stomach pain. When you eat, your nerves don't get the memo to your brain, causing food to literaly rot in your stomach instead of getting digested. As you can imagaine, this causes great pain in your stomach. For me, they also mentioned that it can cause dizziness and light-headedness when standing. While I'd never mentioned nor really thought of this before, I noticed that when I'd stand up too fast it would cause me to feel very faint.
To be honest, I can't remember the exact test they ran on me, but part of it was called a tilt table test. My BP dropped from 95/70 to 50/?? (they couldn't find the bottom number after 2-3 minutes of me standing). It would atleast be something to look into. Also, this is a newer diagnosis (only existing for a few years) so many doctors have never heard of it. They also are not completely certain how to treat it, but they did put my on a low dose of liquid Erythromyacin (1.5 mL) before I eat to coat my stomach and 5 mg of Buspar before bed to help relax my stomah. I also eat 6 times a day, and take at least 20 minutes to eat these small meals. They also had me increase my salt intake.
Last thing... I have a friend diagnosed with migranes in her stomach- have you looked into this?
While I don't know if this will help, I just wanted to throw it out there, hopefully helping someone else. I know what you and your daughter are going through, becuase I'm there. You're all in my thoughts and prayers.
Scamelo - Funny you mention this. My daughter has orthostatic hypotension and I will be bringing her to another cardiologist later this month. I think she might have POTS. I had a tilt table myself a few years back so I am familiar with this. She get black outs ( not fainting) when she stands up at times. her vision goes black for a few seconds and then its ok.
She was told to eat salt and drink gatorade by the 1st cardiologist, but the gastro wants her off all high fructose corn syrup and gatorade is full of it. For now she is off the gatorade.
She is having lots of trouble falling asleep at night, no pain, she just can't fall asleep and is still very tired. Stomach pain down to very minimal, which is wonderful. But we seem to go from one thing to another.
Phenard - Oh wow, danikayoung! It sounds like you may have hit my daughters illness on the head! She is 17 also and now has a neurologist, cardiologist, GI doctor, family doctor and an orthopedic surgeon right now. She just got back from France and she got a stress fracture in her foot just from walking! But, she has been diagnosed with Tachycardia, Gastroparesis (her stomach doesn't empty), migraines, lactose intolerant and I don't know what all else. All these different symptoms popped up at the same time and I keep telling my family dr. that they have to be related and he keeps insisting that they are all seperate. I am about to scream! Would you perhaps be willing to email with my daughter and compare notes? I feel so sorry for her and there is nothing worse than watching your daughter laying there curled up in a ball and crying because her stomach hurts so bad and knowing that there is nothing I can do to make it better! I think it might help if she has others to talk to about this.
Thanks, Pam
Scamelo - Pam
Try checking out this site for your daughter.
www.dynakids.org
We do not belont (yet) but its for kids and if your daughter has some symptoms she may have dysautonomia.
Best of luck
Bibb2422 - My daughter was 12 at the time and diagnosed with H pylori. What seemed to help most with the pain and nausea was ginger (any form ale, cookies crystallized) peppermint or licorice( snaps candy or good and plenty ). She also avoided chocolate.
D3ru - Even if the doctor did not "bless" your son with the diagnosis of celiac disease - they use a 50 year old standard of positive blood antibodies and positive EGD biopsy - this does not mean that he does not have gluten intolerance. I urge you to go to
www.enterolab.com and order the celiac panel - you don't need a doctor's permission to do this, although the lab is run by a highly credentialed gastroenterologist physician who just happens to be ahead of the curve on the gluten intolerance problem. Gluten intolerance has also been found to be a cause of depression and other seemingly disparate symptoms. You can do some research at www.celiac.com . If your son is gluten intolerant and is consuming a lot of pasta and carbs, he will stay in contiuous misery. A gluten free diet is hard to follow at first, but will become increasingly easier as you learn. Many new flours and food items that are gluten free have come on the market in the past two years. I was a person who tested negative on both the blood tests and the biopsy, but tested positive to the stool antibodies found by EnteroLab. You won't believe some of the stories you will hear about the misery and pain that people have gone through before being diagnosed. It's a common disorder - about one out of 100 people have it according to a large study performed in 2004, but only about a limited percentage of those have been diagnosed. I especially urge you to be tested if you have been diagnosed with IBS - a waste basket diagnosis if there ever was one. They say you have irritable bowels. Well, duh, heck yes you do, but what's causing it should be your question. One other possibility is parasitic infection, but surely they have already done stool samples for this. And even if diagnosed with a parasitic infection, you should check for gluten intolerance secondary to the infection.
Phenard - Thank you scamelo! I will definitely check it out. It is the not knowing that is the worse. I took care of my husband through 5 1/2 years of lung cancer before he died but at least I knew what I was up against. Not knowing is really hard. Thanks again!
Purplecak - I saw one person mention a Sphincter of Oddi dysfunction and then no one ever responded to it. I feel that it might be important to check for this, especially if you have severe nausea.
The situations with these girls sounds very familiar to mine. I was diagnosed with FMS when I was 14. I noticed I never really had the joint and muscle pain symptoms that most people get with FMS. I did, however, have severe IBS and soft tissue swelling. I frequently have sternum and rib pain from the FMS and depending on how low the swelling is, it can also feel like my stomach hurts.
One thing no one has mentioned is a synthetic dye allergy. After literally hundreds of specialists over 10 years and what had to be thousands of tests, it was discovered that I was allergic to Red #40. If I drank Kool-Aid or something that contained large amounts of Red #40, I experienced hives and very noticeable allergic reactions. However, when I cut it out entirely, my IBS, depression and anxiety disappeared. It has been noted in research that synthetic food dyes, although safe for most, can cause allergies, stomach problems, and even mood/personality changes.
Please feel free to email me with any questions you may have.
Scamelo - Hi. sounds like we all watched the same show Mystery Diagnosis. I saw it to a few days ago with that same diagnosis
Daughter is much better and up until yesterday had no pain, but she does have a stomach ache today. I hope its just something she ate, but we will have to wait and see.
Scamelo - Also, on that episode of Mystery Diagnosis, that poor girl was throwing up night and day. We luckily do not have that at all
Janel - Hi Scamelo,
I'm glad to hear that your daughter is feeling much better. Has she changed her diet? How is she sleeping? Will she be okay with school this Fall?
My daughter has made many improvements. The new diet and medicine change has helped so much. I just registered her for school so she will be able to get back to being a Senior! She's practicing driving and will get her license tomorrow. I was really scared we would never get back to a normal life but we're moving forward.
She's seeing the new Dr.'s next week to check out how everything is going. She turned 17 last week and wanted to have a piece of cake which she isn't allowed to and she paid a high price for eating the sugar. It was her first cheat in four months. The sugar did her in, which only proves that cutting the sugar from her diet has helped with the pain in the gut. The diet is hard but it really is worth it.
AED365, Thanks for the info about SOD dysfunction. We did see that on Mystery Diagnosis, a great show but the endoscopy showed no problem. Thanks for all your thoughts. Hope your all having a great summer. Janel
Elm43777 - I'm not sure if this is the same or not, but i had the same problems from 15 on. I was diagnosed finally with endometrious. It does not show up on any test. I had a laporoscopy to finally find the reason for my pain. I had 3 sons in the intreim but all three were c-sections. I eventually had to have a full hysterectomy cause the pain got so bad i was on vicodin for years. Do not wait and do not accept you have to live with this. She doesn't have to live in pain. After you have tried everything else, you have the option of sending her to a pain clinic where they will help her deal with this immense pain. good luck
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