Permanent ileostomy recovery time

Hi Chris, thanks for your message. If I had known then what I know now I would have stuck with the ilesotomy and not had the reversal. I was always hopeful that the pouch would get better but in the end I was living with serious UC symptoms without a colon! I understand your reluctance to get the reversal as you sound like you have your life back. For many, the pouch is a game changer, just not for me. There are lots of posts on here about success and failure, but I have to say mainly successful. I have bought a support belt, but not one of those medical looking ones, it was from a site in Germany. I copied it have made a few myself, they are a godsend. Make walking without holding myself together a whole lot more comfortable. Rectal stump is perhaps the most horrendous phrase in the English language. I had a lot of swelling down there initially but it is healing well. Did have bladder issues for 10 days but all back on track. You should talk to your surgeon if it can impact on men more specifically. Get lots of info before you make your decision, it's good you are not in a rush. I feel positive about my recovery hearing from others on this site. I will defiled you know how I get on. Thank you. Alison

Hi there Chris

Glad all is going well for you.. I sort of feel the same some days I think is it worth all the ops to come or just stay as I am ? but then if I don't try I will never know (for me) hard for women as it affects fertility for the next op j pouch so will be holding off for a bit and see what happens ..and if it doesn't then I will be going for the j pouch I know it's not for everyone but even if I get 10/20 years or forever that's got to be worth the process .. Are you in limbo too then ?

Rachelle - Limbo is where I am at. My Consultant has said that at a Conference he attended last Summer the majority of his peers favoured keeping the temporary situation as long as possible with the patient being examined annually. This is Okay for now. The Surgeon who carried out my Ileostomy is keen to carry out a J Pouch operation. When I asked how many him and his colleague carry out it transpired that they do very few although they've been trained for the operation. That worries me some. If I make the bag permanent then removing the Rectum is fraught with danger. I an 58 and recently remarried and although we don't want more children I am scared by the possibility of becoming impotent. The choice is so damn difficult, so, for the time being the status quo is fine. I'm not feeling brave enough to make the decision quite yet.

Hi Chris

Yes I can totally understand your situation it's a shame we don't know certain things for our future still that's life I thought I'd never cope with a stoma which I was very wrong so that says something for sure.. That's strange your surgeon said that mine said there is a 5% chance of pouchitis and 95 % are pretty much back to normal well up to 7 times per day. But like Sheila's son he goes 3 times per day.. Would you consider another surgeon maybe for me this is so important I was 2 hours from home to get the one I wanted plus two of my friends have had the same and j pouches and live happy life's now so there is always hope !!

Hi Guys, Let me update you as I have been reading your latest posts. So difficult for you to have to make such hard decisions. We were having to make those just over a year ago and I worried about whether the pouch surgery was the right decision. But my son was keen as he said it was possible to go back to the stoma if things weren't as expected. He had great chats with the stoma nurse and was reassured about the very low chance of nerve damage which could affect his sex life and chose not to freeze his sperm as he felt confident that all would be good. He was assured that if the worst happened a pill would work! He is fine!! If only we could see into the future, we thought that last year. I am so delighted that he is so well and happy and confident. He still goes 3 to 4 times a day and nothing at night. He worked hard to have good muscle control in his rectum and can delay if on a journey for example. He is a sports coach so being able to run around and not worry about leakage etc was a driving force. Having the fistula and RS ! removed was wonderful, no more symptoms, no more meds. He says he has forgotten it all as he has moved on. He hits the gym, swims and runs and plays all his fav sports without any self consciousness. He has had 33cms of stent fitted in his leg and abdominal vein due to having post surgical DVT so is even better than a year ago. Such a shame that he had all of this cr*p to deal with having had no issues until 2 1/2 years ago. Remember JR Oxford do the pouch surgery all the time, excellent team, brilliant at keeping you informed and after care brill, Prof Mortenson is a hero.

Good luck to you all, Regards, Sheila.

Hi Sheila,

Great news from your end, but to caveat this I was all fine for 4 or so years after my reversal. Sympton free, life went on. I climbed Ben Nevis without the need for the toilet, some 8 plus hours. Was out cycling and running...BM were less than 6 or so a day, full nights sleeps were regular... it didn't impact on my life really.

But it decided to come back with a vengence and fair enough it affected my rectum which your son had removed. My specialist thought I was having pouchitis symtoms from the initial discussions until I said I dont have one. Apparently I was told about half of all people with a j pouch can get pouchitis and sometime end up on immo-sup drugs to contain if antibiotics etc don't do the job..

For me having a permanent  Stoma wasn't or isn't a hard decision - it was quiet simple, easy and something I've pushed for. I will now be free of all areas which my colitis could affect as far as I'm aware.

I may have been one of the unlucky ones, but it has taken over a year for me to get this op as they've thrown the kitchen sink at it with drugs to try and subdue it. Thats a year of pain, getting caught short and having a huge impact on my life. I cohose the reversal initially as I had nothing to lose and it could always be turned around, but this last year has been hell.

I wish your son all the best and hope to god, he's one of the lucky ones!

Best regards,

John

Hi Jon, thanks and I wish you luck with your surgery.

As you know we are coming from a different place. The latest surgery has better results as the rectum is removed and JRO said they have had no cases of untreatable pouchitis. My son is confident that he  will continue to be well. As a last resort he can return to a stoma if things were to go wrong but as he has no disease he hopes that won't happen. We have no reason to believe that the disease will crop up in any other part of his alimentary canal!

To be drug and pain free was his ultimate goal too and we are so grateful to have found the right surgeon and surgery for that to happen.

I may have mentioned that he is still in contact with a UC sufferer he met at the first, general hospital, who also had the same ileostomy which left the rectum and is in daily pain and takes meds as he hasnt chosen yet to have the rectum removed. 

I do hope you have received the correct medical advice from your Consultant, was he able to explain why the rectum removal wasn't an option? I can understand how you want your life back.

Sheila.