Hello, I am new here. My husband was diagnosed at the end of January with mild UC, confined to the very lowest part of the colon. However, we have left appointments with more questions than answers. I have Googled and read everything I can find online, including many posts in these forums, but I thought I would put my questions out there for some feedback.
Our story (I apologize for the length)
Background: 43YO white male, no history of health problems of any kind, healthy diet, healthy weight (5'10", 157 lbs.) We eat very little processed food or junk. The one thing he could do better is get regular exercise, but he is working on a master's degree and that takes up the little spare time he has.
One day in early December, he suddenly got bad diarrhea. Of course, the first thing we assumed was it was a stomach bug, because he was completely fine one day, and the next, BOOM. He had the diarrhea for 2 days. Over the next two weeks, his bowel habits got better but they weren't "normal", so he went to our GP.
GP did bloodwork & stool sample. We were all shocked, (especially the GP) when the bloodwork came back with elevated liver enzymes and the stool showed traces of blood! GP said to re-test in two weeks. 2nd test results were the same and we were referred to a GI.
At the very end of January (the soonest we could get an appointment), my husband had a colonoscopy. GI doc said he believed it is UC, and the subsequent biopsy results said, "consistent with Inflammatory Bowel Disease". The GI said the liver thing was probably a separate issue. Ran two liver panels as well, results of those were all normal.
Each time I was under the impression that the liver panel also included re-checking the enzymes, but they did not.
Finally got in for an appointment at the beginning of March to "discuss treatment", at which point he prescribed Rowasa enemas. We filled the prescript
ion with the generic. (By now, it had been about
3 months since the initial bout of diarrhea.)
Then, this next part was upsetting... It was *I* who had to remind the GI at that appointment about
the liver tests because he said nothing about
them and was shaking our hands getting ready to leave the room! It was like he was totally surprised. He had to leave the exam room to check something, I have no idea what. When he came back, he said the next step was a liver biopsy. We were stunned because we thought that everything was fine with the enzymes. (That's when they told us, "Oh no, we never re-checked the enzymes.")
So off we went to schedule my husband's liver biopsy. As I sat there, I asked the woman if the pre-biopsy bloodwork included re-checking the liver enzymes, since the original tests were now 2 months old. They did not include that, so I insisted they re-test the enzyme levels.
The results of that final liver enzyme test showed that 2 out of 3 were in the normal range and 1 was slightly elevated, but not like it had been.
So we canceled the biopsy and plan to re-test his enzymes in a few months. (Our GP agrees with this; I think GI doc hoped we would do the biopsy anyway.)
Now back to the UC. In all these weeks leading up to his first Rowasa (generic) treatment, my husband had eliminated coffee, fruit juice and peanut butter from his diet and his bowel habits were pretty normal, almost like before any of this had happened.
He's now been on the Rowasa for 10 days and he's got gas and is going to the bathroom 4-5 times a day! The stools are soft and just weird. Sometimes he has to go immediately after eating, like today at a church dinner. I felt so bad for him, because he had to leave and use the bathroom making such terrible gas noises. None of this was happening before starting the Rowasa, and when I read UC sites and forums, his "symptoms" for the past several weeks (before the med) were nothing like what I read. We have never seen blood, and he only had diarrhea those very first two days in December!
I told my husband, if it were me, I'd quit taking that medicine. I do not have confidence in our GI; we live in a small city with only one GI office, but live an hour & a half away from a university medical center. I think he should get a second opinion about
If anyone has made it through this entire novel, I thank you for your patience and appreciate any insight you might give me. What would you do in our position?
Post Edited (Mercury7) : 3/18/2012 3:15:41 PM (GMT-6)