Newbie...hoping someone can relate to my situation!

Hello all, I will share my story in hopes that someone can relate and has been there. I am a 32 year old female who until 6 months ago was healthy and well, a physically fit Mom of 2...

6 months ago I started alternating between constipation for 4-5 days, followed by diarrhea for 4-5 days straight. At the time I wasn't in pain so I wasn't worried and carried on like normal. Then I had diarrhea for 4 weeks straight and lost 10 lbs but still no pain at that point. I went to my reg. Doc who did blood work to check my thyroid which was all normal. She said I should see the GI but it was the week of Christmas so I planned to wait until after the holidays. Then on Dec. 28 I woke up a 3:00 am doubled over with abdominal pain and rectal pressure. I had also been having constipation again for about a week at that point. I ended up going to the E.R. to rule out that it could be appendicitis. The C.T. scan showed "abnormal gaseous distention of small intestine" and "Abnormal loops" on the small intestine. I also had fever and a high white count. I went to the G.I. doc the next week who did more blood work, a colonoscopy, small bowel series (with barium) and an endoscopy, and more x-rays. There were more loops present and they were bigger on all the imaging tests and the Doc. said it looked like I had mucosal damage. The radiologist thought maybe celiac, which was negative after blood work and biopsy. They also found reflux. I changed GI Docs after learning that the old one did not biopsy my colon because it "looked normal" and because he didn't take my pain or weight loss seriously and I was continuing to lose more weight. At this point my fever and white count had stabilized but I was in serious pain every day. The new Doc did the pill cam which showed a cluster of ulcers far into the duodenum. He said that they are not in a location where you would normally find peptic ulcers. He said he thinks I have Crohn's but the blood test came back negative. He was trying to avoid having to scope me again because in the midst of this I learned that I have a heart condition (S.V.T.), which happened in the O.R. during the last scope. I am having an Enteroscopy this Tuesday to biopsy the ulcers themselves. Also, the ulcers are in the duodenum but the abnormal loops are in the jejunum and the first part of the ileum (which makes me wonder if there is something on the outside of the intestines that is causing them). The Dr. has me on Hyoscyamine and prilosec right now to treat my symptoms until we find out what is at the root of the problem. I still have pain every day and I am still going back and forth from constipation to diarrhea. I am starting to figure out certain foods that will set me off. For example I can't eat milk any more and recently after eating ice cream I had diarrhea 6-10 times a day for 4 days. The last time I was in the Dr's office he said "If this isn't Crohn's I am really going to have to rack my brain to think of what else could be causing these ulcers". So I was naturally frustrated by the blood test since I really just want answers to what is causing me so much pain. The pain feels like burning and it is completely gone when my stomach is empty but gets really bad about an hour and a half after I eat. I have noticed though that bread seems to be tolerable.

Thanks for reading! If you can relate to me I would love to hear about it! I am trying to learn as much as I can so I can be my own advocate.

My Dr. did mention the possibility of Zollinger-Ellison. He checked my gastrin, although I believe that to be somewhat off because I am on 2 proton pump inhibitors already. But if the Crohn's test is negative we will have to do more tests regarding that.

Thanks for the reply!

To Spring Mama..I agree with your last response.  I have Zollinger-Ellison Syndrome and my symptoms before diagnosis were almost identical to yours.  Ask your Dr. to order gastrin levels on you as that is a fairly accurate diagnostic tool. I was diagnosed about 15 years ago and at that time we tried all conservative methods of treatment available.  I will be glad to share with you where I am with this illness now if you would like.  The diagnosis is rare and treatment for someone diagnosed today will probably not be as involved as my treatmen has been.  It is a very painful and debilitating condition and I can certainly understand your frustrations.  I look forward to hearing from you and hope I can help you in some way.