Discussions By Condition: I cannot get a diagnosis.

Please Help Me - Undiagnosed GI Problem for 4 Years

Posted In: I cannot get a diagnosis. 16 Replies
  • Posted By: Surfthreeeleven
  • October 18, 2007
  • 05:09 PM

Hello and I apologize in advance for the length of this 1st post. :)

I am in serious need of getting the right medical help to regain my life. I am a 27yr old male that has been battling stomach & other problems that have become increasingly worse over the past four years. My symptoms began in college with a burning sensation in upper abdomen and almost constant lightheaded/dizziness. It got to the point to where I would vomit almost every morning upon waking (which I attributed to drinking), and finally got so bad I decided to seek medical help. I went to an ENT for dizziness where they found my throat was inflammed most likely from GERD. My family physician ordered an upper GI Xray for me which revealed a bacterial duodenal ulcer. I was prescribed Prevpac for 2 weeks, ongoing nexium, and instructed to visit a GI doc for follow up.

One month later, GI doc had me do upper endoscopy. Found no duodenal ulcer, only small hiatal hernia, dilated bile duct, Z-line slightly off, and tested positive for Barrett's Esophagus. He then ordered me to have annual Upper Endoscopies to watch the Barrett's. The next year, I tested negative for Barrett's, hiatal hernia looked better, and no ulcers. (Keep in mind I am still in pain during this time). Finally last year, the upper GI pain began to worsen to an all time high just in time for the exam. Again, Upper Endoscopy showed no abnormalties. My nexium was increased to twice daily, and the GI doc wanted to do other tests.

I proceeded to have countless bloodwork done (all in normal limits), 24hr urine anaylsis, stool testing for everything imaginable, Abdominal CT scan, and another upper GI Xray which all came back normal. Tried Gluten-free, lactose-free, low oxilate diets - nothing dietary has any effect. This is where I really began to lose hope. 2 Weeks after my Upper GI last year, halfway through dinner the pain got as intense as it every had. I instantly got the worst headache/dizziness ever experienced. Felt the need to go to bathroom, where I had severe loose bowel movement and began to vomit. As I looked, I noticed that I had large amounts of red blood in both stool and vomit. Went to ER, gave samples, got stabalized, told to see GI doc immediately.

Went back to GI and was admitted to hospital 2 days later for Upper Endoscopy & Colonoscopy. Everything was red and inflammed, but again everything unremarkable. No cancer, polyps, etc. He tried several different drugs after this, none which worked. I asked to perform a capsule endoscopy which he insisted was pointless, but did anyways. Found 4 small ulcers in my small intestine that could be possible mild crohn's, but said this could not be the cause of all my pain. He started me on mesalamine, which has helped slightly - but no where near comfortable. I could tell he began to run out of ideas as he attributed it to stress.

I went to see a new GI doc for 2nd opinion which wanted to repeat capsule endoscopy. More than 10 small ulcerations found throughout duodedum into small intestine that he said was "text book" crohn's disease. Increased mesalamine and started me on Donnotal. Donnotal helped calm my stomach down a bit, but really bad dizziness with it. Took for a few months, and discontinued. Returned for follow up appt. and explained sypmtoms worsening, started me an Entocort (Cortisteriods). Took for 4 days and felt like I was going to die. Could not continue and have struggled badly with this since.

Lastly, just finished up a "Double Balloon Enteroscopy" last week b/c GI doc. that was the only way to prove if it is crohn's or not. Test showed no sign of crohn's disease, and still awaiting the biopsy results of my small bowel. Since the test, I have had probably the most difficult week of my life. Not really sure what to do, or where to go. I can basically do nothing active, eat next-to-nothing, and fight the pain best I can to get thru work each day.

Can someone please help?

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16 Replies:

  • There is an experimental therapy for inflammatory GI diseases you may want to know about: http://www.tufts.edu/alumni/magazine/winter2007/features/good-worms.html
    aquila 1263 Replies
    • October 19, 2007
    • 07:33 PM
    • 0
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  • You do sound like you have crohns disease. It can affect any part of the GI tract from the mouth to anus. Ulcers disappear and reappear since IBD tends to come in flares. You may experince good periods and bad, but it important to stay on medication and find a doctor who knows how to treat you. Try not to lose faith, and visit www.healingwell.com . They have a great forum for Crohns disease. I know it helped me ALOT just knowing that I wasn't alone. Take care and try not to stress to much.
    Anonymous 42789 Replies
    • October 19, 2007
    • 07:39 PM
    • 0
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  • Thank god you went to another dr for a second opinion. Kiera is right; find a great dr who knows how to treat chronic inflammatory bowel diseases like Chrons.I can't help but think you could have some auto-immune disease that is affecting your GI tract. Chrons is an auto immune disorder and inflammatory bowel disease I believe; where the immune system attacks the GI tract.Can you get to a school of medicine and afford to get fully worked up; or have you already been that route?I am sorry you must go through such debilitating pain; you do need a dr that will work with you closely. I am glad you found a different GI dr from the one who thought the capsule test was pointless... 4 ulcers! What more does the GI dr need to get his attention. Good move to fire that dr who stopped listening to you and ran out of ideas. The 2nd dr seems to be doing better; are you able to work closely with this dr?Hello and I apologize in advance for the length of this 1st post. :) I am in serious need of getting the right medical help to regain my life. I am a 27yr old male that has been battling stomach & other problems that have become increasingly worse over the past four years. My symptoms began in college with a burning sensation in upper abdomen and almost constant lightheaded/dizziness. It got to the point to where I would vomit almost every morning upon waking (which I attributed to drinking), and finally got so bad I decided to seek medical help. I went to an ENT for dizziness where they found my throat was inflammed most likely from GERD. My family physician ordered an upper GI Xray for me which revealed a bacterial duodenal ulcer. I was prescribed Prevpac for 2 weeks, ongoing nexium, and instructed to visit a GI doc for follow up. One month later, GI doc had me do upper endoscopy. Found no duodenal ulcer, only small hiatal hernia, dilated bile duct, Z-line slightly off, and tested positive for Barrett's Esophagus. He then ordered me to have annual Upper Endoscopies to watch the Barrett's. The next year, I tested negative for Barrett's, hiatal hernia looked better, and no ulcers. (Keep in mind I am still in pain during this time). Finally last year, the upper GI pain began to worsen to an all time high just in time for the exam. Again, Upper Endoscopy showed no abnormalties. My nexium was increased to twice daily, and the GI doc wanted to do other tests. I proceeded to have countless bloodwork done (all in normal limits), 24hr urine anaylsis, stool testing for everything imaginable, Abdominal CT scan, and another upper GI Xray which all came back normal. Tried Gluten-free, lactose-free, low oxilate diets - nothing dietary has any effect. This is where I really began to lose hope. 2 Weeks after my Upper GI last year, halfway through dinner the pain got as intense as it every had. I instantly got the worst headache/dizziness ever experienced. Felt the need to go to bathroom, where I had severe loose bowel movement and began to vomit. As I looked, I noticed that I had large amounts of red blood in both stool and vomit. Went to ER, gave samples, got stabalized, told to see GI doc immediately. Went back to GI and was admitted to hospital 2 days later for Upper Endoscopy & Colonoscopy. Everything was red and inflammed, but again everything unremarkable. No cancer, polyps, etc. He tried several different drugs after this, none which worked. I asked to perform a capsule endoscopy which he insisted was pointless, but did anyways. Found 4 small ulcers in my small intestine that could be possible mild crohn's, but said this could not be the cause of all my pain. He started me on mesalamine, which has helped slightly - but no where near comfortable. I could tell he began to run out of ideas as he attributed it to stress. I went to see a new GI doc for 2nd opinion which wanted to repeat capsule endoscopy. More than 10 small ulcerations found throughout duodedum into small intestine that he said was "text book" crohn's disease. Increased mesalamine and started me on Donnotal. Donnotal helped calm my stomach down a bit, but really bad dizziness with it. Took for a few months, and discontinued. Returned for follow up appt. and explained sypmtoms worsening, started me an Entocort (Cortisteriods). Took for 4 days and felt like I was going to die. Could not continue and have struggled badly with this since. Lastly, just finished up a "Double Balloon Enteroscopy" last week b/c GI doc. that was the only way to prove if it is crohn's or not. Test showed no sign of crohn's disease, and still awaiting the biopsy results of my small bowel. Since the test, I have had probably the most difficult week of my life. Not really sure what to do, or where to go. I can basically do nothing active, eat next-to-nothing, and fight the pain best I can to get thru work each day. Can someone please help?
    Anonymous 42789 Replies
    • October 19, 2007
    • 09:23 PM
    • 0
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  • Alternative diagnoses list for Crohn's disease:For a diagnosis of Crohn's disease, the following list of conditions have been mentioned in sources as possible alternative diagnoses to consider during the diagnostic process for Crohn's disease: Digestive disease, chronicIrritable bowel syndromeUlcerative colitisCeliac diseaseAppendicitis - colicky spasmodic abdominal pains of Crohn's disease may be mistaken as appendicitisAcute appendicitis▲Diseases for which Crohn's disease may be an alternative diagnosisThe other diseases for which Crohn's disease is listed as a possible alternative diagnosis in their lists include: Behcet's DiseaseCeliac DiseaseDiabetic DiarrheaDiabetic GastroparesisIrritable bowel syndromePeptic UlcerUlcerative colitisYersiniosis
    rad-skw 1605 Replies
    • October 20, 2007
    • 08:28 AM
    • 0
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  • Feel a need to reply to Rads post of alternative diagnosis, since reading your post lead med to disclude all of theses diseases. Irritable bowel syndromeOnly to be diagnosed after no other known cause can be found and does NOT cause ulcers or bleeding... Ulcerative colitisOnly affects the colon and is never found in the mouth, stomach or small intestine. Celiac diseaseDoes not cause ulcers, but causes the fine "hairs" of the small intestine to flatten, causing irritation that leads to bloating and diarreah. Skin rashes are also ofted seen with celiac disease. Appendicitis Does not cause ulcers and causes pain located in the middle of the stomach witch moves to the lower right abdomen after a short period of time. Behcet's DiseaseCommon to have genital sores with this disease.
    Anonymous 42789 Replies
    • October 20, 2007
    • 09:39 PM
    • 0
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  • First of all, thank you everyone so far for all of your suggestions and helpful links. Right now I am still waiting on my GI doc's office to call for my follow up appointment to go over the double-balloon enturoscopy results. I'm really anxious to see what he has to say b/c I believe he was about 99.9% sure it was crohn's disease I have, and the doc that performed this procedure that is supposed to prove whether you have crohn's or not actually looked into my small bowel said what he was looking at was NOT crohn's. ???? Here's one thing I have obeserved so far that's really interesting - every type of endoscopy scope (including this past one that is supposed to go far into your small intestine) never shows anything resembling crohn's, & most times hardly nothing at all. Both capsule endoscopies showed multiple ulcerations in my small intestine consistently. It's almost as if there is not any scoping procedure that can get far enough through my GI tract to the problem area. Oh well, right now I am waiting on the biopsy results & follow-up to see what GI doc has to say. Also - to answer the question about a school of medicine - I am planning on going on my wife's health care coverage 2008 since it is accepted @ Mayo clinic. I am going to make an appointment to go there for a diagnosis - to have them look at all of these records, and hopefully have a team of different kind of specialists try to figure out what is going on with me. This is the only thing I know to do at this point - anyone have any good ideas?
    Surfthreeeleven 4 Replies
    • October 21, 2007
    • 01:43 PM
    • 0
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  • You haven't given much information about the pattern of the pain versus what you eat. When is the pain worst? What had you eaten before the pain was worst? Have you tried any 'elimination' diets? Maybe if you eliminated dairy the pain would subside. If you find one food that gives you relief (plain rice, plain oatmeal), then eat nothing but that food for a week to let your body rest and heal...then add foods slowly and see what your reaction is to that food. A slow process, but worth it if you discover the cause of the pain. The sudden explosive diarrhea with light head sounds like you ate more fat than your gallbladder could handle. Most docs do not take the time to find the cause of the problem...they are more interested in curing the problem with drugs, without ever finding out why the problem exists. I had a patient whose gastric symptoms defied treatment.....but we nurses knew what his problem was....he spent over 10 bucks a day on the candy dispenser; he LIVED on chocolate and peanuts and NEVER ate veggies or fruit
    outposter 6 Replies
    • October 21, 2007
    • 06:30 PM
    • 0
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  • First of all, thank you everyone. The latest is that I am still waiting to hear from my GI doc for the follow up appointment to go over results from the double balloon enturoscopy and biopsy results. I'm very anxious for this appointment b/c I'm pretty sure my GI doc was 99.9% sure it was crohn's going into this procedure. However, the doc that performed the double-balloon said what he was looking at was NOT crohn's. So this should be interesting.... Kiera - thank you very much for noting the last post of things it couldn't be. I do definetly have ulcerations in my small intestine which does rule out most of those conditions. I somehow do not think it was possible to have the massive GI bleeding that I did, w/ the symptoms I have - for it to be IBS. In fact, the only symptom I seem to share w/ crohn's is the constant abdominal pain. I do not have all of the loose bowel movements and normal bleeding associated with the disease, so I'm really at a loss. My plan at the moment is to go on my wife's health insurance for 2008 since it is accepted at Mayo clinic - and schedule an appointment where I can get a team of docs to look at me to figure out what is going on with my body... Anyone have any other suggestions? Thank you:)
    Surfthreeeleven 4 Replies
    • October 21, 2007
    • 08:54 PM
    • 0
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  • One other thing to note - I have severe & constant lightheadedness that no physician seems to be able to explain or associate w/ any of my health problems. My GI doc says not related to my bowel problems, ENT says hearing & balance looks normal, cardiologist says my heart looks great, & family MD did bloodwork & catscan of my head and everything fine. The only thing that I have that HAS been diagnosed is the GI stuff (ulcerations on small intestine, duodenal ulcer, hiatal hernia, etc.), my heart condition (aortic bicuspid valve I've had since birth), and kidney stones. I just can't figure out where all the lightheaded/dizziness & stomach pain coming from....
    Surfthreeeleven 4 Replies
    • October 21, 2007
    • 08:59 PM
    • 0
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  • Hi... I just wanted to let you know that bleeding is not as common as you would think with crohns. Alot of people with this disease have never bled and I am one of them. As far as diarreah goes, well.. not everyone has diarreah. Some have constipation as their only symptom. It could also be that you are in remission and in that case your bowels wold be close to normal. I have a very mild case and I use the toilet 3-4 times a day on my bad days. I might have loose stools 2-3 times a month. My stool is usually formed, even tho it has more fluid in it. Hope you get to the bottom of whatever problem it is soon. I know how frustrating not knowing can be. And if it does turn out to be crohns, well know that it is not the end of the world and visit www.healingwell.com . They have a great forum... Good luck!
    Anonymous 42789 Replies
    • October 21, 2007
    • 09:03 PM
    • 0
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  • You haven't given much information about the pattern of the pain versus what you eat. When is the pain worst? What had you eaten before the pain was worst? Have you tried any 'elimination' diets? Maybe if you eliminated dairy the pain would subside. If you find one food that gives you relief (plain rice, plain oatmeal), then eat nothing but that food for a week to let your body rest and heal...then add foods slowly and see what your reaction is to that food. A slow process, but worth it if you discover the cause of the pain. The sudden explosive diarrhea with light head sounds like you ate more fat than your gallbladder could handle. Most docs do not take the time to find the cause of the problem...they are more interested in curing the problem with drugs, without ever finding out why the problem exists. I had a patient whose gastric symptoms defied treatment.....but we nurses knew what his problem was....he spent over 10 bucks a day on the candy dispenser; he LIVED on chocolate and peanuts and NEVER ate veggies or fruit My diet has been pretty strict since June of 2006 when the pain began to be more severe. I pretty much eliminated dairy at that time, and consume next-to-none now. I mostly eat lean meat - chicken, ham, or fish with rice or potatoes (generally with a bit of salt, and a bit of smart balance). If I eat fruit - i have either bananas or melon (cantaloupe & honeydew). The ONLY beverages I consume are water, gatorade, & propel. I tried 3 different diets for about 2-3 weeks each: low-oxilate diet, gluten-free, & lactose-free(even tho my diet is already lactose-free). I also have not eaten out at a restaurant since last year b/c of the spice & flavoring they use on their food. Everything I prepare is generally pretty bland & boring, but have gotten use to it for sake of my stomach. As for the pain - it is generally worse when I am hungry, and the dizziness always peaks when I am hungry as well. I feel that if I do not get something to eat right then and there I am going to pass out. It normally makes me very irritable and uncomfortable. Then once I eat, the pain continues for about an hour afterwards. Then I generally begin to feel relatively better until hungry again.
    Surfthreeeleven 4 Replies
    • October 22, 2007
    • 00:47 PM
    • 0
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  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Dizziness could be caused by hypoglycemia due to your poor diet. You should consider seeing an endocrinologist about your dizziness. Some endocrine disorders can cause problems with the gastric digestive process, such as addisons disease, thyroid problems.Try taking some manuka honey before meals to ease your stomach.
    Anonymous 42789 Replies
    • October 23, 2007
    • 10:45 PM
    • 0
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  • You could have a food allergy, or even a metal allergy or toxicity I was allergic to the nickel in my braces and now I'm allergic with nickel in food. I have to be on a low nickel diet just to get rid of my horrible stomach problems including dizziness and nausea. There's so many weird food allergies out there! Try going to a natural doctor. It could even be something in your environment. Also there's even something called cranial-sacral therapy, its kinda like massages and sometimes if you have an injury or even stress it can trigger something that lasts long after the injury is healed and it helps get your body flowing again. Good luck!
    Anonymous 42789 Replies
    • October 24, 2007
    • 00:09 AM
    • 0
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  • You could have a food allergy, or even a metal allergy or toxicity I was allergic to the nickel in my braces and now I'm allergic with nickel in food. I have to be on a low nickel diet just to get rid of my horrible stomach problems including dizziness and nausea. There's so many weird food allergies out there! Try going to a natural doctor. It could even be something in your environment. Also there's even something called cranial-sacral therapy, its kinda like massages and sometimes if you have an injury or even stress it can trigger something that lasts long after the injury is healed and it helps get your body flowing again. Good luck!HELP - I have the same problem - What have you found out - RU still posting on this board - I hope so.
    Anonymous 42789 Replies Flag this Response
  • My diet has been pretty strict since June of 2006 when the pain began to be more severe. I pretty much eliminated dairy at that time, and consume next-to-none now. I mostly eat lean meat - chicken, ham, or fish with rice or potatoes (generally with a bit of salt, and a bit of smart balance). If I eat fruit - i have either bananas or melon (cantaloupe & honeydew). The ONLY beverages I consume are water, gatorade, & propel. I tried 3 different diets for about 2-3 weeks each: low-oxilate diet, gluten-free, & lactose-free(even tho my diet is already lactose-free). I also have not eaten out at a restaurant since last year b/c of the spice & flavoring they use on their food. Everything I prepare is generally pretty bland & boring, but have gotten use to it for sake of my stomach. As for the pain - it is generally worse when I am hungry, and the dizziness always peaks when I am hungry as well. I feel that if I do not get something to eat right then and there I am going to pass out. It normally makes me very irritable and uncomfortable. Then once I eat, the pain continues for about an hour afterwards. Then I generally begin to feel relatively better until hungry again.I wish I had seen this website/thread when it was originally posted. I hope all is well and hope there will be some update to this thread at some point.This was almost my story exactly except I had a first initial diagnosis of Colitis- My Doctor did a Scope because I had Chronic Diarrhea for months and had lost some significant weight- It was noted that I had a severe case. The kind of Colitis seen in only 1-2 of the total Colitis cases in a year. So it was expected to last many months- however it was debilitating. I had to go out of work which was at the time inpatient/emergency healthcare. I had all the same scopes it appears as the poster- I did a few other lab tests that you didn't do it seems however, and while hospitalized I had the HIDA scan to check my gallbladder.I had a most excellent GI Doc.I seen a few people question exactly what this is. It is an Irritable Bowel Disease which is quite different then Irritable Bowel Syndrome. Crohns is different then Ulcerative Colitis as well. Crohns is an Auto Immune Disease. I have recently been diagnosed with another Auto immune disease which I'm currently under treatment, and had no idea that it isn't rare to have an auto immune disease masked by another. I dismissed my current problem because I also had it with Crohns- my joints hurt all the time while flared up with Crohns. I couldn't climb stairs. You would only know about this joint pain if you have suffered this symptomAfter that first initial finding of Colitis there was no other positive tests. I only had symptoms of Crohns. I lost over 60lbs in a matter of months- Medications I was given over the course of my flare up:Prednisone- Pentasa- 5-ASA for IBD (was taking 4,000 mgs a day, throwing it out there to see if anyone has comparable dose)Imuran - immunosuppressantCreon- enzymeneurontin- Klor-Con 20MEQ (for K Dur)- Potassium - this gets tends to get low with chronic diarrhea- which mine did- it is IMPORTANT to not let your potassium to get low- Lotronex (doctors have to be in the prescribing program for this- qualified to prescribe- this drug was taken off the - *ok to prescribe list- but was returned only to certain Doctors- Lomotil- stronger then otc dosing to help stop the diarrhea if your out and about-MorphineAvinza- extended release morphineOxycontin-Effexor- Anti-depressant.. when sick for long periods of time you tend to become weak and depressed, it's out of your control. These are the things I can best suggest/advise- You are your own advocate- If you are not getting the care you think you deserve or feel you need change doctors until you are satisfied.Don't read the next part if ya don't wanna read about what the typical (and My) Crohns stool looks like.My Crohns symptoms were Chronic Diarrhea- at times it would just come out wherever I was and I wouldn't know it. Disgusting I know, nobody knew but me but it made me want to leave this earth. It wasn't like normal bowel. Consistancy is phlemy just like huge clear snot and produced what appeared as oily yellow substance that floated on top the water in the toilet. Sometimes just drinking water made me use the bathroom. Woke up throughout the night to run to the bathroom- My Doctor had me fast once or twice I can't remember, but sometimes I just couldn't eat for a few days, I just drank broth. For months I ate potatoes(in any form), candy, broth, and bread, and i could tolerate soda most the time. That was it. I became a vegetarian. I had to give up meat- meat and roughage- like lettuce and carrots- etc.. would feel like bricks grinding in my stomach- And I could be talking and without warning vomit. Then at times have nausea. I lost a lot of hair! I have real long hair and would wear it up- but it was thinning, I could tell when I would grab it to wrap it b4 work and At work on my scrubs blah gross. I would have to go into the bathrooms and take off my scrub jacket and de-hair it every few hours. Nothing like going into ER and someone standing over you with hair dangling off them huh? It started in 2004 that flare up lasted over 2 yrs. and have only bad 3-4 day flare ups now. but am currently seeing a cutting edge GI doctor. He has new innovative ideas on the GI tract I have never heard it is amazing stuff. My first GI Doctor had a panel of Doctors working on my case because he was so lost why I was so sick and couldn't find one substantial reason in the scopes after that Colitis- I considered him a leader among the rest because of his passion to do the right thing by his patients- he never gave up, treated my symptoms. Thats what good Doctors do!I believe I just eventually got through the flare up.Good luck to all, you aren't alone!
    Anonymous 42789 Replies
    • September 15, 2010
    • 10:00 PM
    • 0
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  • The previous post here seems to have alot of the things in common with what I go through, although more severe and long lasting then my own, but I've already been told twice that I tested negative for the disease mentioned. My stool more or less has the same consistency and coloration as mentioned, I have chronic diarrhea that I have very little control over. 3-4 stools a day is an average day on a bad day I will spend an hour and a half just in the bathroom. I do wake up at night because of it on average twice a night even when things are going alright. In a bad flare the only thing I've ever experienced that is more painful is kidney stones, and sometimes it gets as bad as that too (the lower end of kidney stone pain). There are days, weeks, even months where I find that I feel perfectly fine with only occassional diarrhea that I would classify as nothing abnormal. Sometimes a flare lasts 2-3 days when it happens, sometimes it lasts 3 weeks to 6 weeks in length. I guess its normal to feel depressed at this point especially with no diagnosis, but I do and have had no prior proclivity to being so. People keep mentioning going to a medical college to have a work up for a diagnosis, but does anyone know how much that would cost?
    Anonymous 42789 Replies
    • February 4, 2011
    • 08:38 PM
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