Discussions By Condition: I cannot get a diagnosis.

Abdominal pain, inflammed intestines and still undiagnosed!

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Miss Diagnosed
  • April 24, 2009
  • 00:45 AM

Ive been dealing with on and off stomach cramping and pain for the last 3 years and have yet to get a solid diagnosis. A few years back I had a scan at the ER that showed swelling of the ileum which is part of the small intestine. I followed up with a gastroenterolgist and had a colonoscopy. The conclusion that the Dr. drew from the testing was that I had IBS. However, over the past few years my symptoms continued to worsen. I have cramping in my lower abdomen and lower back, chronic diarhea, inconsistency in the coloring of my stool (ranges from really dark to extremely pale colored), and I feel exhausted all the time. Ive been to the hospital 3 times over the course of the last 6 months. The first time I went I found out that my ileum was inflammed again, and the ER doctor told me that I more than likely had crohns disease and to follow up with my doctor. I havent been able to go to a specialist due to health insurance problems so I had to follow up with my primary care doctor who agreed to treat me for free. He ordered a small bowel series and that came back clear of crohns disease. Ive returned to the ER twice since then in severe pain and each time they tell me its crohns, even when I tell them that the colonoscopy from a few years back and the recent small bowel series proved that I did not have crohns. What could this be? I feel extremely frustrated and dont know where to go from here, no one is listening to me and my family now thinks Im a hypochondriac because one minute I tell them its crohns, the next minute Im informed its not. If anyone has any ideas on what this could be, something specific that I could make the hospital test me for, I would greatly appreciate your help.

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6 Replies:

  • Look up Endometriosis. Check and see if you have any of the other symptoms. Then ask your Gynoabout it.
    Anonymous 42789 Replies Flag this Response
  • I can so understand where you are coming from. I have the same exact problem. Only I have had ulcers in my colon.... The doctors never seem to agree. For the past 4-5 years I have been told crohns, infectious colitis, crohns, IBS, crohns... They can never make up there minds. My symptoms are mostly the same as yours. I have had pale stool, undigested food in my stool, diarreah, nausea, pain in my upper and lower abdomen, flatluence and even constipation. I have been told that it can take years for them to make a correc diagnose. I joined the forums at healingwell.com and have got alot of info from there. Maybe you should think about browsing their forum... Hope you get to the bottom of it soon. Kiera
    Anonymous 42789 Replies Flag this Response
  • Look into your diet. I had the same problem. I was diagnosed with IBS at least 5 times and IBD three times. It turns out that I had a Gluten Intolerence. Please keep in mind that you can be gluten intolerent and have a negative biopsy for Celiac Disease. Testing for Celiac is a tricky test that most do not know how to perform properly. Try going on a gluten free diet for 2-4 weeks and see if you start to feel better. Within 2 weeks my stomach cramps had lessened and 3 months into the diet and I am feeling like I used to before I started to get sick.Good Luck and don't let anyone tell you that you are not sick. No one knows your body as well as you do.
    Anonymous 42789 Replies Flag this Response
  • Ive been dealing with on and off stomach cramping and pain for the last 3 years and have yet to get a solid diagnosis. A few years back I had a scan at the ER that showed swelling of the ileum which is part of the small intestine. I followed up with a gastroenterolgist and had a colonoscopy. The conclusion that the Dr. drew from the testing was that I had IBS. However, over the past few years my symptoms continued to worsen. I have cramping in my lower abdomen and lower back, chronic diarhea, inconsistency in the coloring of my stool (ranges from really dark to extremely pale colored), and I feel exhausted all the time. Ive been to the hospital 3 times over the course of the last 6 months. The first time I went I found out that my ileum was inflammed again, and the ER doctor told me that I more than likely had crohns disease and to follow up with my doctor. I havent been able to go to a specialist due to health insurance problems so I had to follow up with my primary care doctor who agreed to treat me for free. He ordered a small bowel series and that came back clear of crohns disease. Ive returned to the ER twice since then in severe pain and each time they tell me its crohns, even when I tell them that the colonoscopy from a few years back and the recent small bowel series proved that I did not have crohns. What could this be? I feel extremely frustrated and dont know where to go from here, no one is listening to me and my family now thinks Im a hypochondriac because one minute I tell them its crohns, the next minute Im informed its not. If anyone has any ideas on what this could be, something specific that I could make the hospital test me for, I would greatly appreciate your help.Have you ever been test for Celiac Disease? I had the exact same symptoms you discussed above. To find out all you have to do is get a blood test. Celiac disease affects that small intestine and is casued by an allergy to gluten. You should get tested!
    Anonymous 42789 Replies
    • September 19, 2009
    • 03:33 AM
    • 0
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  • My name is jessica i have been having this same left side pain for the last two years. I am constantly in pain. Everytime i breath, i talk, i sit/stand it doesnt matter it still hurts. I have went to the er 6 different times and have been diagnosed as far as irritable bowel syndrom, kidney stones, uti's, cysts on my ovary, also an std, ( which came back negitive) but still no answers because i am still in pain. I have three daughters and i am only 21. I cannot play with my kids because it simply hurts to move. My family also thinks i am a hypochondriac. I am out of answers as well. If you have anyquestions please email me at jessicataylor432@gmail.com
    Anonymous 42789 Replies
    • October 21, 2009
    • 10:47 PM
    • 0
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  • I too have had all the same.. I did go on the Gluten free diet and it helped but didn't stop all the pain. The pain feels like someone is reaching inside me and trying to pull my insides out! The doctors cant figure it out. I've been to several doctors and several ERs. I told them I hope they figure it out at my autopsy cause I'm done with the bills and no answers. I have learned if I eat very small amounts at a time the pain is manageable. However, if I eat more than a handful I pay for it all night. My pain is accompanied by vomiting and diarrhea at the same time till my body runs out of fluid. Also, the fatigue makes me soooo tired. I swear sometimes my arm feels like the bones are going to actually break when I'm trying to left something.
    Anonymous 42789 Replies
    • August 28, 2010
    • 11:57 PM
    • 0
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