Posted 8/10/2011 2:53 PM (GMT -6)
I was diagnosed back in 2003 and at that time had rectal drainage from a peri-anal fistula. I remember at the time feeling like the world was crashing down on me, boy did I have no idea what was coming. I began with the usual medications before moving on to the big dog, Remicade. This was my wonder drug as it put Crohn's into remission to the point where my GI told me she couldn't tell I had Crohn's anymore. She took me off all med's and told me to see her again in 6 month's. Well month's passed and I was feeling like a million bucks. I thought I was cured so I rescheduled the appointment and again and again and again. Before I knew it, it had been a year and half since I saw my doc and things weren't going so well anymore. I went back and saw her and Crohn's apparently roared back into my life. Because I let so much time pass without medication, Crohn's had diseased my sigmoid colon and rectum. And because my body had built up antibodies, the Remicade that was my wonder drug, was no longer affective.
I spent the next year and a half trying other medications(Humira, Immuran, Prednisone, etc.) and going in and out of hospitals before having a temporary colostomy in 2009 to let my rectum heal. The problem is, it never did. It seems to have gotten worse. Worse to the point where I’ve been told to remove the rectum and have a permanent ileostomy because the diseased rectum will likely become cancerous.
Removal was not an option for me and I refused to do so because I was determined to get put back together. I’ve had a couple of corrective surgeries to fix a prolapsing issue but other than that, I have been relatively fine and my health outside of Crohn’s is great. But I absolutely cannot live with a colostomy. I’m 34 years old and the idea of doing so really frightens me. I have gotten used to it in the two years I’ve had it but I feel like it is taking a part of my life away from me that I’ll never get back.
So now, having recently located to the LA area, I’ve been seeing doctors at Cedars Sinai and have an opportunity to have the j pouch procedure done. The surgeon has told me that the odds are against me simply because I have Crohn’s. This procedure is usually for patients with UC because with Crohn’s, there is a high risk that the inflammation may come back. But for me, most of it has been located in a specific area and has not affected my small bowel or most of my large bowel. My issue is that scarring has destroyed my rectum but the surgeon scoped me and felt good about the procedure because he says there is enough good rectum left that he can use to attach the j pouch.
So now, I find myself researching trying to find the good and the bad about the procedure, but to be honest, someone would have to paint me a pretty bleak picture for me to not at least try it. Of course the biggest side affect that I’m most concerned about are the sexual side affects. It’s kind of scary knowing that I’m this close to this kind of procedure because I have no idea of the outcome. And won’t know until I wake up from the final surgery(It’s a two – three surgery procedure.) Will I have any complications that will force me to have a permanent ileostomy? Will I have enough large bowel to reach my newly constructed rectum? Will the inflammation that has been relatively confined, spread? Will I end up with sexual side affects?
It’s a very scary decision to make and one that deserves as much thought as possible before reaching a final decision.
I've been fortunate in many ways throughout and am very lucky to have a girlfriend who has stuck by my side through the worst of it (And she actually still wants to marry). :)
I feel for every person who has any kind of bowel disease and for what they have to go through. I could never wish this experience on even my worst enemies.