Hey all, I've had my continent “J pouch” for 25 years with no issues. For the past 2 months, I've been having cramping, urgency, and pain after eating. I have had both a pouchoscopy and CT, which revealed that I had inflammation in the pouch as well as a problem with the valve, mainly a stricture and problems intubating. After 2 months on prednisone, the inflammation has somewhat reduced, but the valve problem is still there. My well-accredited GI doctor tells me that I most hope that the valve issue somehow resolves itself. He has asked me to come and see him in 6 months, and if there is no improvement, then I will need to remove the J pouch and revert to a typical ileostomy. Apparently, there are just no surgeons that will revise a J pouch due to complications. My question is, should I wait for 6 months in the hope that the valve somehow corrects itself? This seems futile at best, with little hope of change. My biggest concern is, after having a number of surgeries and revisions over the past 35 years, am I at risk for short bowel syndrome? Has anyone heard of any alternative pouch solutions? I have heard briefly about BCIR; does anyone have any knowledge or experience with this?
Hi Mad Carpenter, my surgeon removed my j-pouch for my permanent ostomy, and I do not have short bowel syndrome. I had also looked into a BCIR and was discouraged by a surgeon who trained under Dr. Barnett. He said he wound up removing more BCIRs than creating them. This is just my story. It's always good to get plenty of feedback and have several options, and I'm sure you'll get more responses here to help with your decision.
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In both of my cases, I had no choice. It was surgery or be put 6 feet under! I thank God that He has been with me all these times. Without Him, I never would have known what to do and might not have gone to the hospital when I did. I don't know if you have had your surgery or not yet but I hope you will hang out on this website when you are done. I have learned a great deal through the people here and it is so great having others who have had the same thing done and been through what you are about to or have gone through. The only thing I have turned down is a reversal of the ileostomy. When the doctors did the emergency rebuilding of my original ileostomy this last February, I told them I did not want to go through this again. My doctor told me at that time that I was no longer a candidate for the reversal. In a way, I was very relieved. The last three years of my life have been a nightmare for me. I do not want to go through any of it again. If you wish to be rehooked up and they say you are a good choice for that, research it carefully. Every surgery I have ever had except for Old and New Maxine and the emergency surgery on my broken foot, I have spent weeks researching. I recently had my C5 C6 disk in my neck replaced with an artificial one. I went to my pre-op with 2 pages of questions for the doctor. I knew everything that they were going to do and could talk intelligently with them. I always try to research my adversaries! Don't cancel your surgery. It is nice not to have to suffer any longer with horrible pain. We all had to change a few things around when we had our surgeries but in the long run, most of us are glad we did it. I know I am. Good luck to you!
Hi
I have BCIR. I had it revised once. I don't have short bowel syndrome, but I can't remove more or revise again because of that.
I got Crohn's again in the small intestines after the surgery (initially, it was only in the colon for 16 years), and I believe because of the inflammation I have now valve issues too. I have leakage, and it is not 100% controlling as before. It gets better if the disease is under control, but now I have to put a bag on at all times. I still prefer to have it even if faulty.
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Thanks for the feedback. First, call me Mad, because I am. Secondly, I have had multiple surgeries from an ileostomy to a K pouch, then a revision, all removed for an ileostomy, further revisions, and finally the J pouch. Each time they do any surgery, they use some bowel. I think all in all, I have had 11 surgeries. Hence my concern about SBS. Your feedback makes me feel better, though; hopefully, it won't become an issue for me.
Hello there! I'm so sorry to hear that you are experiencing colitis-type symptoms after all this time. It can be really debilitating after years of good health. I have had further surgeries after my first J-pouch stopped working properly and actually underwent a "re-do," so they took out the old pouch and created a new one (second J-pouch).
I am literally sitting in the IBD ward as we speak, having had the second pouch removed last Tuesday and a permanent ileostomy formed, which means my bowel is very, very much shorter than most people's. Although it's early days, I have experienced no issues with SBS even though I would be a prime candidate for it, and the new ileostomy is working really well.
I went through over 5 years of additional pain in the hopes of holding onto the pouch, but it was just a huge waste of my life. I am so looking forward to being pain-free and not living my life in the bathroom, so I would encourage you to think about what you want.
What are the benefits of waiting for 6 months? What are the probabilities of the issue "correcting itself"? Are there stats? What was the doctor's recommendation?
Do feel free to contact me directly if you have any further questions.
Keep smiling and keep well.
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I'm rereading this thread, Mad's and Mrs. Eff's stories, and I'm shaking my head at the medical field's neglect to take into consideration the amount of bowel we lose with each surgery, not to mention the scar tissue. I'm not discounting AO166's desire to keep what she has because we should all have that choice, but for those who were perfectly okay with their original "temp" stomas, they just might opt to keep them if they knew these negative aspects of the outcome of further surgeries.