Oh the dramz...
I had an appointment with my old doctor in Maryland on Friday to get a second opinion regarding surgery and have a fresh (but old and familiar) set of eyes look at my situation. I thought it would be useful to go back to him because he hasn't seen me in two years but yet I trust his opinion and he is familiar with my disease.
I am really, really glad I went back there. Aside from the familiarity and professionalism of the practice, I feel like my old doc brought something refreshing to the table, listened to me, and had a definitive course of action that didn't simply involve recommending a proctocolectomy for the lack of a better plan. I was really convinced he was going to agree with my doctor here and tell me that I needed to accept defeat. But he didn't.
He has a couple of opinions about what could be going on which he thinks I should explore before completely giving up. I think his ideas are very rational, which makes me more eager to try them.
I won't even try to explain it myself, but my doctor thinks there could be a possibility I have diversion colitis. The treatment for this is to irrigate my stoma with short chain fatty acids, a nutrient my colon doesn't receive right now since there is not substantial flow there. The hope would be to get my inflammation under control and eventually be able to reverse my ileostomy. He also wants me to get a colonoscopy soon because they will be able to tell right away if my problems right now are simply my Crohn's acting up or in fact diversion colitis.
If the irrigation doesn't work and it appears to be my Crohn's acting up, he thinks I should go BACK to Remicade along with a drug called 6-MP I used to take a while back. I hadn't even thought about it till he mentioned it, but once I started seeing my doctor in Philly I stopped taking 6-MP because he didn't think it was doing anything beneficial. While I stopped taking 6-MP months before Remicade stopped working, there have been many studies to suggest that taking 6-MP with Remicade indeed improves its efficacy. His thinking is that I should stick to something that has proven to work in the past while tweaking the other drugs used in tandem.
So now I have a few things to think about. I think I've officially taken surgery off the table for the time being. I have to figure out if I want to go back to my doctor here and hope he will consider the suggestions that I've received without being offended that I went and saw someone else. Or do I want to start commuting to Baltimore again every time something needs to be done?
If this is in fact diversion colitis I will be pretty pissed at myself. I was sicker than I've ever been in my life last year because I didn't want to be on steroids. I had an elective surgery that I was told would improve my life and it didn't. And the very same purpose of that surgery (to not have shit flowing through my colon) could possibly be MAKING me sick again. In the end I am still searching for a resolution while dealing with a crappy ileostomy and steroids.
Can you ever win with this disease?
Oh, the good news about having an ileostomy? Colonoscopies requiring only fasting! OMG!
That's great news Ellen! It sounds so much more optimistic then the other option.
If you do want to commute to your doctor in Maryland you always have a place to stay:) you should have told me you were in town... I have on more paid day off to burn before I leave that place!
miss you lots!
hey el! I know you'll make the decision that's best for you. I'm really glad that you're getting second opinions so you're confident with the direction you choose.
Tom is doing the surgery in about a month and they are removing his colon, connecting it to the small intestine, I believe.
It's a very different situation but I will be home a couple times in the next few months. I'll come visit! :)
Thanks for the support guys.
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