After getting a K-Pouch one year ago and finding this forum, I have been impressed with all the praises being sung about the virtues of a K-Pouch. Except for a few short weeks where my intubations have gone well, I have had one problem after another, and am considering getting a reversal. If anyone knows of someone who has had a reversal, I would appreciate hearing about it and what their experiences and complications were. Thanks for any and all responses.
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What sort of problems do you have? I suggest looking up Sharon’s posts as she has had every problem and, further, she explains the resolutions with excellent clarity. Another approach is to search the site for your problem.
Who did your K? Have you spoken with them? Sometimes the nurses are more helpful than the doctor.
I had a variety of problems during the first year with the K. Some were just getting used to it and others were legit problems, which this site helped me resolve. After five years I wouldn’t say I have problems, but rather quirks that have to be treated differently on certain days or because of certain foods.
Sorry that you have problems. And I didn’t even answer your question. Jan
Thank you "jan15" for your quick response! I will try to answer all your questions because I would really appreciate any advice! Right after surgery I started with skin irritation and excessive moisture (possibly this was due to two hernias that came after surgery, one to the left side of the stoma and the other right above my navel). Intubation was difficult because the "channel" from the stoma to the valve at the pouch was too long and crooked. About 6 months after surgery I started getting leaks, intermittently at first then more regularly. After a pouchoscopy in October my surgeon suggested that repairing the hernias might be a fix, which was done in November, along with a shifting of the pouch and shortening of the "channel." For the first four weeks I thought we found a cure; the catheter went straight in easily and the leaking and excessive moisture stopped. However, as the swelling went down it appeared that the peristomal hernia was not repaired. I sent a message to my surgeon last week telling her that the problem is getting more and more unbearable and so far she has not responded. Starting today I am trying to attach an outside pouch to see if that will at least give some protection from soiling my clothes. My surgeon is Dr. Jean Ashburn at Wake Forest Baptist Hospital in North Carolina. She is highly reputed and I have absolutely no complaints about the pouch or her technical ability. It is the post-surgery complications she seems to not be able to correct. As you said, her nurse is very helpful , but so far, even she has not responded. If using the outside pouch is something I can live with, I am considering just having the whole thing reversed. By the way, you mentioned Sharon's posts. I have seem some of her postings, but obviously not the ones that describe her issues. Do you know it there is a way to search by her name, so that I can see all she has written? Or, how to to search the site for my problem? Although this seems to be a great site, my "navigational" abilities are sorely lacking! I hope I can get a resolution that will not involve more major surgery (I am getting too old for it!!) Thank you again for opening this line of communication, Jan. Bill
there Should be a Search function on the left side of the Screen. If you go to the top of the page you will see three lines. select the three lines and there is a pull down menu. The Search function is the third down. I don't know if that will yeild the information you are looking for but I think that is what you are asking about. The best of luck to You.
Thanks for search suggestions. However, I do not have the 3 lines and I don't see a search option on any of the top pages. I did find two "Search" links, though. One was for all 14,000 members and not in an order by which I could search for "Sharon." I found another search that was down a level or two, and that let me search by name. Only one "Sharon" was there who was not the Sharon who I was looking for. A lot had added initials and last names, but none of those seemed to be a recent (last 5 or 6 years) participant, or K-Pouch folks. So, the search for "Sharon" goes on . . .
Look under skn69. That’s the Sharon you want. She recently posted under the K pouch corner under the topic Sad News.
Thank you! I read that post. I'll look and see if I can find more from her!
She may also be open to you private messaging her. She is a wealth of very good information.
Thank you. I just applied to her FaceBook group. I'll look forward to "chatting" with her!
I just read your post and I am so sorry that you are not doing well with your k pouch and intubation.
There are a lot of possible reasons why things are not going well...probably more than one.
Firstly, why did you need a K pouch? Why not a J pouch? What led up to it?
Next, are you hernia-prone? Do you get them often?
Thirdly, when you leak, are you sitting, standing, laying down or squatting down?
Leaks happen for a lot of reasons:
1. Your pouch has partially or completely slipped off of the wall or is hanging sideways...What that does is pull on the valve, stretching it and popping it open...the fuller your pouch, the heavier it gets and the more it tugs on the valve...the way to manage it is to empty more often to avoid it getting to heavy...until you can get it fixed.
The hanging pouch can also cause the valve/canal to twist making it difficult to find the trajectory...or make it feel like you are hitting a 'wall' when you intubate...you need to gently twist the tube as you push it in to follow the new direction or use a smaller or more flexible tube.
A peristomal hernia or a hernia in the muscle around your stoma weakens the hold that the muscle has on your valve...leaving it weak and possibly incontinent.
The fix is obviously to fix the hernia but if your tissue is weak or fragile you may need a mesh repair...I had 6-8 hernais over a period of a few years...they came on suddenly...I had never had one before the age 47 and then suddenly they wouldn't stop...in the end, after a lot of pouch surgery, valve fixes and moving the pouch, I found a very sympathetic and incredibly cooperative surgery who specialized in laparoscopic surgery...he went in a few times and did mesh repairs...they saved me and my pouch.
One of the tests for continence is to lay in a full tub...if there are bubbles coming out of your stoma, you are not continent...Try turning sideways to see if there is a specific position where you lose continence.
As for tests to see what is going on inside of you...the best that I have found is an opacification...dripping 'Opac' into the pouch and taking Xrays...my radiologist (a friend of the very kind laparoscopic surgeon) was kind enough to listen to me...
I told him that I was only incontinent at certain times...so we started by 'dripping' the contrast solution into the valve and taking a few shots then filling the pouch and taking more with me on my back, then on each side, sitting up, standing up and then the same thing with the pouch half empty and totally empty...it gave us a real idea of what was going on in there...I do not live on my back or intubate while laying flat so why take the picture with me on my back...that was how we figured things out.
I do not have all of the solutions but I did have a lot of the problems...and was darn lucky to find good doctors who were willing to go the mile with me.
You need a good radiologist and surgeon who listens and calls you back if possible.
p.s...do not hesitate to PM me if you need to
There are many colo-rectal surgeons that will do a K-pouch, but many will not do revisions due to the difficulty. The only reason I moved back to San Diego after 35 years of living in another state without specialists in K-pouch experience, was for that reason only. I had already had a couple of stoma revisions with Dr. Worsey at Scripps Hospital in San Diego who had years of doing revisions. Since I had lived in San Diego decades earlier this was an easy choice for me. If you haven't already looked into Docs in Florida who do have many years of experience with K-pouch or BCIR (trademark name for some of the K-pouch surgeries} that may be a good route to go as well. I would say that all K-pouch surgeries and revisions have been revised over the years to become more effective. I believe there are several surgeons who do the BCIR and revisions, again a trademark name, in Florida. There is a comprehensive list of docs who do revisions on this site. I've had 5 revisions in 43 years and would do it again if needed. Hoping you find some solutions!
Hi dgs and thanks for your comments. If my surgeon doesn’t give me a remedy tomorrow when I see her I will add Scripps to my list of options. I am a former SoCal resident myself, and I hope I don’t have to relocate as you did (I don’t think I could afford it these days)! I’ve had my K-pouch one year and my first revision in November. Obviously, my leaking problem was not resolved, so I am sure I will need another. If she disagrees, I hope to appeal to Dr. Kiran in NYC. If that fails too, I will be contacting Dr. Worsey. Thanks again!
Seems like what you need is a good surgeon to fix your K pouch. There really are not many surgeons wh can do this well. I heard of similar other situations where the problems were fixed after repair of the valve. Dr. Kiran at Columbia New York Presbyterian Hospital has a lot of experience with the K pouch and with repairing BCIR valves.
Hi Shimm! Sorry I didn't get back to you sooner. My surgeon wanted to arrange a visit with a hernia surgeon, but I wanted someone more specialized. So, I have surgery scheduled with Dr. Kiran in NYC for late August. We'll see if that is the answer to the problem! Thanks for your thoughts! Bill
I just read your post and was wondering how you are doing? I was just in NY for my annual k-pouch scope with Dr. Shen. I know Dr. Kiran is the one to see if there are problems, so I hope he was able to help you. Dr. Shen actually left Cleveland Clinic for NY because Dr. Kiran was in NY. They are a great team.
Hi Marsha! Nice to hear from you! I have heard that Dr. Shen is part of Dr. Kiran's group now, although I have not met him yet. Dr. Kiran did my corrective surgery a little more than a month ago. Until last week I apparently had an infection and was in terrible pain, making me doubt whether I made the right decision. (I was thinking about having a reversal.) I just finished a round of antibiotics and things are MUCH better! Pain is all but gone and my stoma and pouch is behaving better than I expected. I'd have been happy with improvement. If things stay as they are right now, I will be able to agree with others in our group who say the doctor "gave me my life back!" In 11 months I will go to NYC for my first annual scope with Dr. Kiran. Maybe we'll be there at the same time and be able to meet! That would be nice!