Still Undiagnosed and Worried

[naturegirl97]

Hi Everyone, I joined this forum last month. I've been having digestive issues for 2 years. It started in April 2009 with stomach cramping, nausea, gas, full feeling in stomach, occasional D, no energy and generally feeling lousy. I thought it would get better, so when it didn't, I saw my PCP in July 2009. She examined me and set me up with a referral to an GI doctor. I saw him in September 2009. I told him what I'd been experiencing, and I told him my dad was diagnosed with Crohns when he was in his early 50's (my age now), and that I was thinking I might have CD also (since it can run in families). He scheduled me for an upper endoscopy and colonoscopy. I went in for both procedures the following month. The only thing he found right away was diverticulosis and gastritis. I saw him again in November for the biopsy results. He said I had H Pylori bacterial infection in my stomach, and he prescribed the triple therapy antibiotics, etc. Here's the thing: The treatment eradicated the H Pylori, but my symptoms are still with me unfortunately I tried to deal with it because when I called him a couple of months after completing the antibiotics to complain I was still feeling sick, all he told me is "you still might have problems sometimes." I cried when I got off the phone. After dealing with still feeling lousy, I scheduled another appointment with my PCP and told her I'm still sick and to please refer me to another GI doctor. She made that referral for me, and I saw this new doctor last month. She recently did another endoscopy, as well as a lot of blood tests. I saw her this past Friday for those results. The blood tests were fine, with the exception of some inflammation that one of the blood tests showed (don't know what test that was). She also said I had gastritis and some "mucosa" in the beginning of the small bowel (whatever that means). She wants me to do the pill camera test. I'm waiting for the hospital to call with my appointment date. I have to do half of the prep, and fast 12 hours before, and 4 hours after the test. I'm hoping and praying to feel well again as I know we all are. Were any of you diagnosed with Crohns after having the pill camera? I'm also wondering if I could have Celiac. I'm sorry this was so long. Thank you all for your support. I'll let you know the outcome as soon as I know.

 

[Jennifer]

I've never had the pill cam test done only the good old fashioned ones like upper and lower scopes and upper and lower barium x-rays, CT scans and blood tests. I hear a lot of people on the forum waiting to get the pill cam test done but not a lot of test results mentioned (some have mentioned all clear). One pill cam got stuck and one was told they didn't need it and had to try getting it again (dunno if they are still waiting or not). I'm curious as to why your new GI only did an endoscopy instead of a colonoscopy as well since the last GI did say that they found diverticulosis which does cause inflammation and could explain your inflammation markers going up (but then again, so does gastritis http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002135/). If you do in fact have diverticulosis, then simple antibiotics don't fix it. You have to change your diet as well but only a little as far as I've read (by adding more fiber). If that doesn't clear up the symptoms so says the link I'm about to post, then it says that surgery to remove that section may be helpful. http://digestive.niddk.nih.gov/ddiseases/pubs/diverticulosis/

Every time I see a new GI even if I had all the tests done last week, the new GI ALWAYS runs their own tests and does not go off of someone else's diagnosis. That's why I'm a little troubled by your new GI since you didn't say that they did a colonoscopy and more surprisingly is that neither of them did barium x-rays or a CT scan. Those tests are still used today to help diagnose IBD. I'm hoping this new GI helps you but so far my first thought is that you may have a third opinion in your future which isn't uncommon unfortunately.

Diverticulosis and gastritis come with their own issues like cramping, constipation, more pain, loss of appetite, nausea and vomiting etc. Medication can help with the gastritis at least. Did your first GI prescribe anything to you after the diagnosis he gave?

 

[naturegirl97]

The GI doctor I saw most recently didn't feel another colonoscopy was necessary since it's only been a year-and-a-half since the last one. I do know both GI docs are a part of the same medical group that my insurance covers. I think that's why she didn't repeat the colonoscopy. I don't know what to think, but she wants to do the pill cam next. The first GI did not prescribe a thing to me after the diverticulosis diagnosis. His nurse gave me a handout about the right diet for diverticulosis. That's about it. The new GI did prescribe Hyoscyamine Sulfate (for the stomach cramping), and my primary physician prescribed Zofran, which I take as needed for the nausea. I haven't taken the Hyoscyamine Sulfate yet, because the stomach cramping/pain hasn't been severe. I also take meds for anxiety disorder. Thanks so much for your reply and for the website links.