I have had my pouch for 18 years and it has never been right, I have always had to take medication occasionally to keep down the pouchitus. I have to take medication about once a week for a day, I am tired of all the bowl movements about 6-8 day, and having to take medication. I also think the infection is effecting my overall physical health, I think I could feel better. I am thinking about reversing my pouch and obtaining a colostomy bag. Does anyone know anything about this? Thank you.
Scott
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I nearly did this 18 years ago. I still have the draft email I was about to send to my consultant to give me the bag back.
I never did, and took it upon myself to get better on my own. Much like others have found here, I used Metro and Cipro for only short 24hr bursts, or 48hrs, then immediately off. Eventually the gaps between requiring antibiotics got longer and longer and longer, over a LONG time, and once I went a full 12 months without needing a single tablet. I used to even take Codeine to slow things down, I tapered off that and take nothing at all any more.
It was a long, hard, slow road, with a lot of exercise, dietary changes, determination, ups and downs, and having a J-Pouch is always going to be a compromise.
I would think LONG and hard about this, it took me 4 years to get to a stage after my last operation where I was even close to being "well" in what terms a normal person might consider.
Also believe it or not, during the times when my pouch was really bad, McDonalds was one of the very few foods that did not irritate it! Go figure eh... absolute junk, but for some reason never gave me an issue when I was unwell.
I know you are 18 years in, which is a good go, maybe they can give you a temporary stoma again to let the pouch heal up?
If you ever want to talk PM me a message.
I am 43, and had my final surgery when I was ~23/24, so thats coming up for 18-20 years.
It sounds more like you need to talk to a better doctor. Taking meds once a week to keep pouchitis away is not working. You can certainly go back to an external bag but that doesn't mean you won't have issues with that.
Good luck.
Your surgeon can create a new ileostomy to allow things to calm down. Once you’ve healed you can then decide whether or not to reconnect. If you decide not to reconnect there will be at least one more surgery to “deconstruct” the original pouch, remove the cuff, etc. I had a complete reversal and reconstruction - pouch advancement - because of a separation on the staple line of my original pouch. I have a total of 17 years in and am 8 years post advancement. I never had pouchitis or obstructions with the original pouch; I now I have both from time to time and my pouchitis frequently doesn’t respond to antibiotics. There’s no panacea with this disease. You either manage a permanent ileostomy or deal with hopefully infrequent bouts of pouchitis. Either way you have the possibility of obstructions. Personally, I regret having the advancement. I believe that my quality of life would have been better with a permanent ileostomy. This is your decision to make and I hope you have a good outcome whatever you decide.
I had a significant issue with my J pouch that made its removal necessary. I strongly did not want to have a permanent ileostomy with its associated issues and opted to get a continent ileostomy that does not require having an external bag. I published an article entitled Researching My Options" that you may feel helpful in addressing your situation. The link to it is:
@BillV can you tell us more about day to day with a continent ileostomy? It sounds like an intriguing option although my quick Google search indicated it’s not typically done anymore due to complications.
For me, I go about my daily activities in the same way as I did before I had any surgery. The main difference is that I must use a small catheter (plastic tube) 4-5 times a day at my convenience to empty the internal pouch. The only evidence that I have this procedure, other than the surgical scar, is the button hole size stoma below my belt line that I cover with a small absorbent pad. I can do any physical activity I want, enjoy intimacy without reservation, and eat almost all the foods I enjoy.
Following successful introduction of the J pouch, continent ileostomies (BCIR and K pouch) became less frequently performed. They are primarily performed for people who have significant problems with their J pouch or conventional ileostomy and also by those who are unsuitable candidates for a J pouch. The failure rate for these procedures (defined as the need to remove the pouch) is about 10%. Most complications (e.g. pouchitis, fistulas and valve failure) can be successfully treated by non-surgical or surgical means. There are currently no surgeons performing the BCIR, but there a few who do K pouches. Please feel free to message me with any questions that you have.
@rcrossco_1 posted:I nearly did this 18 years ago. I still have the draft email I was about to send to my consultant to give me the bag back.
I never did, and took it upon myself to get better on my own. Much like others have found here, I used Metro and Cipro for only short 24hr bursts, or 48hrs, then immediately off. Eventually the gaps between requiring antibiotics got longer and longer and longer, over a LONG time, and once I went a full 12 months without needing a single tablet. I used to even take Codeine to slow things down, I tapered off that and take nothing at all any more.It was a long, hard, slow road, with a lot of exercise, dietary changes, determination, ups and downs, and having a J-Pouch is always going to be a compromise.
I would think LONG and hard about this, it took me 4 years to get to a stage after my last operation where I was even close to being "well" in what terms a normal person might consider.
Also believe it or not, during the times when my pouch was really bad, McDonalds was one of the very few foods that did not irritate it! Go figure eh... absolute junk, but for some reason never gave me an issue when I was unwell.
I know you are 18 years in, which is a good go, maybe they can give you a temporary stoma again to let the pouch heal up?
If you ever want to talk PM me a message.
I am 43, and had my final surgery when I was ~23/24, so thats coming up for 18-20 years.
Sure I would love to talk on the phone can you email me your number? Thank you
@BillV posted:For me, I go about my daily activities in the same way as I did before I had any surgery. The main difference is that I must use a small catheter (plastic tube) 4-5 times a day at my convenience to empty the internal pouch. The only evidence that I have this procedure, other than the surgical scar, is the button hole size stoma below my belt line that I cover with a small absorbent pad. I can do any physical activity I want, enjoy intimacy without reservation, and eat almost all the foods I enjoy.
Following successful introduction of the J pouch, continent ileostomies (BCIR and K pouch) became less frequently performed. They are primarily performed for people who have significant problems with their J pouch or conventional ileostomy and also by those who are unsuitable candidates for a J pouch. The failure rate for these procedures (defined as the need to remove the pouch) is about 10%. Most complications (e.g. pouchitis, fistulas and valve failure) can be successfully treated by non-surgical or surgical means. There are currently no surgeons performing the BCIR, but there a few who do K pouches. Please feel free to message me with any questions that you have.
@BillV, Thanks sharing the article.
@Scott Sheridan: There is a K-pouch corner on this site with a list of surgeons posted who regularly perform the k-pouch procedure. I believe the outcomes with a skilled surgeon are actually quite good, and the technique is still being taught in some of the major centers.
After my own research and discussion with my surgeon, who is well known for the k-pouch, I opted for the conventional j-pouch procedure. I was a good candidate, but not 100% sure I wanted to deal with the control and frequency issues. I went with it based on the statistical outcomes, because I had absolute faith in the surgeon, and in part because he assured me I would still have the option of the k-pouch should I later wish to make the switch. But I would not be able to convert k-pouch to j-pouch.
Having lived 3 months with the loop ileostomy - and mine functioned quite well, unlike many others whose testimonials are in this site - I might go to an end ostomy if I had to convert. I liked the control, and at 7 mos post op my diet is still less varied than with the ostomy.
I agree with some of the others who have posted about having the appropriate medical support: a team of surgeon, gastroenterologist and related providers at a major center with a high volume of pouch patients yields the best results over time.
Best of luck to you whatever you decide.
Hi Scott,
You and I are in the same boat . 1 step surgery pouch 24 yrs ago. Chronic dependent refractory pouchitis. Daily on Cipro/Flagl for 21 yrs. I go every hour except when I sleep I can wait 4 hours. I had a traumatizing ONE step surgery, so I have never had an extenal bag and have fear about the recovery and functionality (and was vain until recently hitting menopause). Decided to try Remicade after developing horrible side effects with Flagyl. I'm on Prednisone for the second time in the last year. Remicade first dose was today. I am trying Remicade before trying a loop illeostomy to see how I do. Have you tried Remicade/Humira/etc?
Valerie -51 yrs with 2 kids
I was on Remicide for 5 years prior to my pouch procedure. It was wonderful for the first 3-4 years and then I formed an immunity to it. Also I have primary sclerosing cholangitis and than we also a reason for the surgery and pouch. Good luck
