Newbie-same story

newbie-same story

I recently found this forum and couldn't believe how familiar the stories are to how i have felt. About 15 years ago i was having terrible abdominal pain just above my belly button with nausea, vomitting and diarrhea. ER doctor assumed it was my appendix. The surgeon that removed my appendix diagnosed me with regional enteritis of the terminal ileum based on the appearance of colon and small bowel during surgery. I had a colonoscopy soon after that only showed diverticulitis. All flare ups since then have been thought to be the diverticulitis. A few years ago I was diagnosed with rheumatoid arthritis because of flu like symptoms and a very high ra factor. Again, another screening colonoscopy a few years ago showed only diverticulitis and bad internal hemmorhoids. I have continued to have 2-3 attacks each year of abdominal pain, fever and diarrhea with severe dehydration. This year has been different. Pain, diarrhea, and occasional vomitting have been persistent. I have lost 45 pounds in 6 months. I have had another colonoscopy, barium study, lab work, nuclear emptying study and pill cam. All have come back normal, pill cam did not make it through small intestine for more than 12 hours so did not see entire small intestine. They said I have a very slow motility issue. Don't know how because it seems like most things go right through me! I have had 3 cat scans that have all shown narrowing of the terminal ileum. I have another colonoscopy scheduled. They are planning on doing biopsy of the distal ileum. They have never gone into the ileum before. Of course I don't want crohns but I do want an answer and to start feeling better. I have really started to question if it is all in my head. I never knew that it was such a hard disease to diagnosis. I'm so tired and frustrated. Thank you for your support and understanding.

Hi and welcome! There are many on here (including myself) who are seeking answers. I can understand how it feels to want to know what is going on with you body, though you don't want to have a chronic illness.

Your symptoms do align with IBD. Also, it is not uncommon to have other auto-immune diseases with IBD, such as RA. So, you are doing the right thing being thorough with tests.

Sometimes it can take awhile to get a diagnosis. It can be very trying. But I hope you get answers soon and start to feel better.

Feel free to visit the Undiagnosed Club - we're all in the same boat there!

Thank you for your reply. I can tell you understand the frustration of not getting a diagnosis. It can make you feel a little crazy. I feel like I'm wasting everyones time and a lot of my money! But, my "gut" feeling is that something is not right. Thanks for the encouragment.

Listen to that gut! Remember, you are your best advocate, so continue to be proactive!

Hi CB. Welcome to the family. As Jill said, there are a lot of people here that understand what you're going through. I hope that you're able to get an answer to your suffering soon. I hope, at the very least, you are able to find friendship and support. :hug:

My fingers are crossed for you that this next scope will tell you what you need to know in order to get treatment and feel better. We're all here for you.