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I had my surgery in my early 60's and I am doing fine. I also had low grade dysplasia with moderate to severe pancolitis. I was not in the best of shape when I had my surgeries (from what I've been told. However, my recoveries and subsequent results have been very good. You are right though, everyone is different. My pouch is 15 months young and so far I have had no real issues. I also had problems with Remicade but I had limited prednisone usage.
I'm 62 and currently recovering from my third and final "takedown" surgery after 16 years of UC pancolitis. I had tried all the usual medications and like your husband, prednisone was the only medication that could pull me out of a flare. I was also on Remicade for 10 years and during that time didn't have another major flare until March 2016. That put me in the hospital for six weeks--and after 5 blood transfusions I was told flat out that "this is no longer about saving your colon." I had an emergent subtotal colectomy with end ileostomy. During the next 6 months, I researched the risks and rewards of a permanent ileostomy vs a j-pouch. I figured if I could minimize the risk, I'd go for the j-pouch. Your choice of a surgeon and hospital is absolutely key. I opted for the Cleveland Clinic and have nothing but good things to say, but I know there are many excellent surgeons--just do your research and ask a lot questions. In hindsight, I think it was actually beneficial for me to have not responded to prednisone and Remicade this last flare. I've always felt like my gut was a ticking time bomb and I feel fortunate--even at 62--that I'm still young and strong enough to recover with a successful j-pouch. Had my "bomb" gone off 5-10 years later than it did, I'd probably have kept the bag. Right now, I'm looking down at the flat gauze bandage where my bag used to be and I am so grateful the bag is no longer there. Your husband will do fine! Lean on this group anytime.
I am following your story, LOVETHATGREY, because it's similar to what I am going through, except that I have had UC 30+ years. I am 61 and look to having 2 step surgery, 1st step a few days after Christmas.
My UC has been controlled these past years, so it is the dysplasia that is sending me toward surgery, also.
My best wishes to both of you! We can cheer each other on through this journey.
Hi Teacherlady! So nice to meet you. Wow our stories are very similar. My husband was initially going to wait until the new year to schedule his surgery but he's now thinking about early December. I am so scared for him but I know this is necessary in order to save his life. Please continue to follow and I will as well. Best wishes to you.
Hi Love! Yes, let's follow each other. Best to you and your husband!
I’ve had my J-pouch since 2002, in my mid-40s, and it gave me my life back. Although I’m now obliged to stay on antibiotics, due to chronic pouchitis, my diet and activities are unrestricted. Since my surgery I’ve taken up scuba diving and martial arts.
The surgery and adaptation can be pretty challenging. A simple external end ileostomy is a much easier process, but it does leave you with an accoutrement that some of us are willing to try hard to avoid. Many folks who’ve had their surgery for dysplasia rather than active disease have written here about their struggle to come to terms with the change in their circumstance. Whether you’re dealing with a J-pouch or an ileostomy, it’s a significant step down from a well-functioning colon. Those of us who’ve had surgery due to active disease have a more obvious, day-to-day improvement on our lives.
Most of the posts here represent various problems that can crop up with J-pouches. The majority of J-pouchers aren’t writing on a support forum, they’re just enjoying their lives.
Good luck!
Thanks Scott. Sorry you are having to deal with pouchitis. Hope you can get off those antibiotics soon, It's wonderful to hear that your diet and activities are unrestricted - that's wonderful! I really would like to think that the majority of J-pouchers are enjoying their life - gives us hope! Thanks again.