Hi Everyone from Oz, Had the J-pouch since 1992, due to UC, have been advised to reverse back to illeostomy. The surgeon told me that my bowel has increased in size to 4 times the size of normal, plus is pink and floppy. My question is has anybody reversed successfully after 20 years + with a j-pouch? Had 4 adhesions surgeries in last 2 years too.
Thanks Heather
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Hi Heather,
I cannot tell from your post whether it would be possible for you to have a pouch reconstruction in order to avoid getting an ileostomy. If you could provide additional information about your condition, perhaps others could express their thoughts. Getting a second opinion would be helpful and might provide alternatives. If pouch removal without getting a new j pouch is indicated, alternatives that avoid an ileostomy with an external bag are the Koch pouch and the closely related BCIR. I am not sure about the availability of those procedures where you live.
Bill
Hi Bill, I don't think the surgeons would do another j pouch, and I have asked them before about the other procedures and they don't seem to know about them.At least in Queensland. The main reason I want to be reversed is continual rectal area pain also I was told on a scope a couple of years ago that I had bleeding ulcers in the pouch. I was concerned that as the bowel is 'enlarged and floppy', the surgeon's description, whether it could withstand a reversal or better just to keep putting up with it. The specialist has never said there would be a problem with reversal, I intend to discuss this with him on my appointment in 2 weeks. I just wondered if other long term (20 years +)have had reversal without any problems.
Heather
I have my pouch 15 years and this summer had a reversal due to pouchitis. My stoma works great. It was a hard recovery mentally and physically at least for me. I also developed diversion pouchtis/colitis which I believe hindered my recovery. This happens when the fecal stream is diverted but not everyone gets it. I got it under control with fatty acid suppositories.
Since my situation is different from yours I'm attempting a reversal in 10 with the use of a bio drug to hopefully keep my pouchitis under control.
I also had a adhesion surgery 5 years ago.
Good luck.
Unfortunately, the k pouch and BCIR are not widely known or performed, even here in the USA. They are now used as alternatives for failed j pouches and problematic ileostomies. I googled for k pouch surgeons in Australia and found that Prof. John Mackay in Melbourne does them. He was trained to perform the procedure by the noted Dr. Fazio of the Cleveland Clinic in 2010. You may wish to contact him to see if he is still doing k pouches and ask how many of them he has done. When recurrent high grade dysplasia made removal of my 30 year j pouch necessary, I opted for a BCIR to avoid the quality of life issues that some with end ileostomies experience. My j pouch was removed in the same operation as creation of my BCIR and the surgery went well. I now have a very good quality of life and am thankful that this alternative was available for me. Let us know how things turn out for you.
Hi Alleykat, thanks for your reply, I can see you've had a rough time of it too. I hope things work out for you. I've really decided to get rid of the Jpouch, due to the constant pain in the rectal area. I've had this for at least the last 5 years and also I'm sick of spending most of my day in the loo, 20 times +. The constant embarrassment of looking for the toilets, whether it be in shopping centres, visiting friends, family etc. and on a recent cruise around Australia being mostly stuck on the ship unable to go on many tours as toilet facilities were unreliable.
The Jpouch has been great, specially when my kids were small, and for many years I even forgot I had it. Unfortunately this ended after my new specialist recommended PTQ Inserts into the anal sphincter muscle to gain better control, my old specialist who was retiring was dead set against it and how I wish I'd listened to him, as since then I have had constant pain in the rectal area, due to the implants rejecting, breaking up and migrating to other areas. On consulting yet another specialist I was informed they were put in the wrong place. Yes I considered suing but in the end I just want a pain free life. Many pieces have been removed, but they cause a tremendous amount of pain and bleeding. One surgeon told me he saw the exit hole of one piece thru the skin. I feel the only way to get rid of the rectal area pain once and for all is to have the whole lot removed, anyway I see the specialist mid December for a final decision.
Hi Billy, thanks for googling the surgeon in Melbourne, that quite a way from me, about 1500 kms! I have really decided to revert back to the illeo, not a great outcome but can't see really any other choice atm. I'm glad it worked out for you tho!! The BCIR sounds like a really good option!!
I do feel that if I hadn't had the implants(in above reply)I wouldn't now be in this position but its too late to whinge on about it and just have to do the next course of action. This reversal has been talked about for years as really my specialist doesn't want to do it, but on one of my latest scopes he said the valve was slipping and I had bleeding ulcers in the pouch so now he has actually recommended it but left the final decision to me really.
Anyway I'll find out in two weeks and will keep you posted, Thanks for your replies,
Heather
You might want to add this to the ostomy forum. Or do a search. Many older pouchers on this site had a total removal and if they don't answer contact them. Everyone has been very helpful to me.
Heather, I'm sorry you're paying the price for an overly adventuresome (and insufficiently competent) surgeon. Please take care to ensure that your pouch removal is done by a surgeon who is well-versed in that procedure. It can be a difficult surgery to execute, best left to experienced hands. The last thing you need is another mishap.
Good luck!
Had removal sept.14 had been on prednisone for almost four years. Surgery went fine but I had a heart attack three days later. Had three abscesses final one not healed as yet this is where the anus was. All my problems I believe where made worse by the pred. Just finished the taper this week but still feel not that great my joints and muscles are very sore. See the cardiologist tomorrow maybe the statins I am on. Ostomy is so so very itchy even if it is not leaking going to try a new product by Convetec called moldable. By the way had my pouch since 1986 the last ten years where not the greatest.
Good Idea AlleyKat, I will go the on the ostomy forum. Thanks .
Scott I hear what you"re saying about an experienced surgeon, and in its creation of the J pouch I feel I had the best surgeon available on the Gold Coast, or probably in Queensland, unfortunately he has retired. Due to UC I could not join a medical scheme here in Australia, not one of them was prepared to insure me so I have been left the lap of Medicare. I am very grateful to the Australian Health Care Systtem, but being a public patient means no choice of surgeon, specialist etc. I just have to hope that I will be looked after, indeed I have no complaints thru all the emergency ops I have had in the last years, the only complaints was the insertion of the PTQ implants, this was actually a minor procedure done in a private hospital - go figure!!
Hi Shawne H - sorry youre having to go thru all trouble and hope things improve for you soon. I see you also had the pouch quite a while. Well time will tell for me now!!
Thanks for your replies everyone!!
Will keep you posted
Heather
Heather, I know nothing about Medicare in Australia, but I'm pretty sure they have a method (however flawed) of assigning "qualified" surgeons to cases. In all likelihood, a surgeon can declare himself untrained for a particular procedure. If you (politely) quiz the surgeon about how many pouch removals he has done, you have a decent chance of getting routed to someone with the necessary experience. No surgeon wants to risk a bad outcome if they can be obviously identified as unqualified.
Hi Scott, sorry only just seen your post. Had my appointment with the specialist, its now been decided to have yet more tests before a decision is made. Got so sick of the run around,not being able to get better pain killers for the rear end its not a joke! When the registrar tried to get me pain killers the computer wouldn't allow it, she went to see her boss but no the computer still blocked it, pretty pathetic!! Then they said I'd have too see a pain specialist, decided to take some anti-inflammotories that I had already and within a few days the swelling in the rear was gone, unbelievable, dunno why the so called experts couldn't have worked that one out. Everyone here is so scared of the specialist they won't do anything without permission and he had to go into surgery so nothing was done.
Have a US soon as now I may have a hernia,in the groin so maybe causing the trouble, the cat scan I had recently said probably but now have to have more tests.
Hope you had a good xmas and happy new year!!
Heather
