Posted 12/26/2019 9:07 PM (GMT -6)
I wanted to come on here and provide an update since I've been sporadically active here since before my diagnosis. I had surgery just before Thanksgiving and while there have been complications, I am feeling much better. It isn't really a discussion of whether or not I regret surgery as by the time I actually had it, it was no longer optional. Like most people, I wish I'd done it sooner. For informational purposes, I had a total colectomy with end ileostomy. This means I still have my rectum and can either proceed to step 2 of a 3-step J pouch procedure, or proceed to a proctectomy ("barbie-butt" surgery) and have my rectum removed and anus sewn closed. I always intended to have a permanent ileostomy and proctectomy and that continues to be my plan now, post-surgery.
The Ileostomy: The ostomy has been a non-issue for me, for a number of reasons. First, it is very well behaved (thus far); it doesn't leak, I don't have super liquid or high output causing dehydration, I have no reactions to the appliance, I can't really feel that it is even there. Second, I've been mentally preparing for this for many years. I think it is tough to accept when it comes as a surprise but for me I knew this day would come eventually and I did a lot of research in the interim so I have not really had any emotional struggles with it. Ileostomy life is good.
The Remaining Rectum: This has just been awful. I'm told my experience with the remaining rectum, however, is highly unusual so please don't be alarmed when you read this. The UC inflammation in my rectum did not calm down after surgery so I've had approximately 10 painful bowel movements (of blood/mucus) daily since surgery last month. This was initially treated with a steroid suppository which did not work. Just recently I started back on Canasa and that has made a world of difference and so far am only going once a day now. All this rectal nonsense has only reinforced my decision not to proceed to J pouch (among many other reasons).
Complications: Despite being on blood thinners in the hospital, I developed a blood clot just a few days after coming home. This necessitated an ambulance ride and a second hospital stay and several months of blood thinners in my future. I am told this clot is highly associated with the hypercoaguable state caused by IBD.
All in all, life is undoubtedly better.