I’m 64 yrs old. I’ve had a J pouch since 94. Due to several blockages and strictures, I’ve been recommenced by my surgeon to remove my Jpouch and do an ileostomy and ‘barbie’ butt. I’m concerned about my age going into this. What recovery will look like. Has anyone here undergone a similar experience? I’m very concerned about having to do this.
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I had a J pouch for 30 years and also had lots of adhesions. Fortunately, none of them caused a blockage, but recurrent high grade dysplasia and a malignant polyp in the anal cuff made pouch removal necessary. I avoided getting an ileostomy by getting a BCIR (similar to a K pouch) and have had no problems with it. Removal of the J pouch and adhesions took my surgeon several extra hours. I had a second opinion with a surgeon at Mayo Clinic who recommended an ileostomy as opposed to a K pouch. I asked him why he would only recommend an ileostomy, and his response was, “your age”. At the time, I was in good physical condition at 68 and had no problems with the BCIR surgery. Three months post-op, I was back to doing many of the activities I enjoy. In reviewing my options, I realized that getting an ileostomy with an external bag would not give me the quality of life that I wanted. I have no regrets for the choice I made.
Since many doctors have negative opinions about the BCIR and closely related K pouch, you may want to get a second opinion. I encourage researching your options before committing to surgery. You can get a nice introduction to the ileostomy alternatives on the Quality Life Association web page (www.qla-ostomy.org). Please feel free to message me if you have any questions.
Hi Lori, I had my jpouch removed at age 62. It had been disconnected a year earlier due to a huge abscess and all the other many issues I had from the 24 YO pouch. I have a lengthy posting at https://www.j-pouch.org/topic/...-and-time-set?page=1 which details what I went through and the healing process which you might find helpful. I've had it out of me for a year now, and am doing quite well.
I knew for years that the pouch would have to come out, due to many problems. I only wish I had thrown in the towel earlier - I was just afraid of the surgery, mostly. As it turned out, the surgery went OK, but due to other "surprise" issues (low blood pressure, an AFIB episode, ileus, gastritis), the recovery took a bit longer. The Barbie Butt wasn't near as painful as I had been expecting; the large midline incision healed fairly rapidly. I learned that you need to eat lots of protein to help the healing process along.
I had the pouch out the end of Oct. '19, had to to back in due to ileus, but by January, I was getting around quite well, getting out and about, etc.
The stoma takes some getting used to again - both physically and mentally. There are a couple support groups I'm in on-line which helps tremendously, and also, having a good WOCN is helpful. The products that the ostomy companies have these days are light years ahead of what they were back in '94 (I had my jpouch made in '93).
If you have any questions or would like to talk, don't hesitate to message me or ask away in the forums. There are a number of us who've gone through this, and I'm sure they will also be willing to share their experiences and support.
I chose a permanent ileostomy after 14 years of hell with a jpouch! I was in constant pain and cramping and trips to the bathroom! I exhausted all use of medication to bring into remission my Chrohn's! Now 3 months after surgery, I am 80% pain free and though i still struggle with blistering around stoma, the issue now is that suddenly my stoma has about tripled in length! This does not bother me but I wonder if this is normal! It did stick out maybe a 1/2 inch and suddenly a week ago I noticed it has lengthen to about an inch and a half! i know that id far better than it going back in, but is this a problem????
I, too, opted for a permanent ileostomy after 7 years of j-pouch hell, with constant pouchitis, cramping, pain, and general misery. I've done much better since I got my ileostomy. I was diagnosed with Crohn's a few years after my IAP surgery.
The same thing you're describing above happens to me sometimes. I describe it as telescoping out, but I think the medical term is prolapsing. Mention it to your ET nurse, surgeon, and/or gastroenterologist when you see them and they can let you know if they have any concern about it. Some degree of change in stoma size is not that big a deal, in my experience. I've had 2-3 revision surgeries for my stoma, including when it was prolapsing a lot (much more than 1.5" - more like 4"), although there were other reasons for that surgery so it wasn't just for the prolapsing, and my surgeon tacked down my "dynamic stoma" more tightly.
