UC and night sweats

hi would you recommend surgery and j pouch. I'm just in talks about surgery and I am worried about what I am getting myself into

Hi Tina, my son would definitely recommend j pouch reversal. He loves his new normal, uses toilet as usual, no stoma, no meds and no disease. He is lucky that he has never had a problem since day 1 post pouch surgery, goes to the loo 3 or 4 times a day, nothing during he night. His only "symptoms" are that his output is pretty liquid, you can use a thickening product if required, but he doesn't bother and occasional cramp from not drinking enough. He eats everything even hot curries! The pouch surgery was easy and in 4 years has never had an accident. The one thing I would stress is go to a Hospital and Consultant who does the surgery frequently and successfully as they have the experience. He went to John Radcliffe, Oxford, Prof Mortensen, just brilliant. St Marks London is also strongly recommended. We travelled but it was worth it. My son has an annual follow up and all is well.

Good luck, ask anything you like.

Sheila.

Thanks shelia. I'm glad your son is doing OK. My surgeon is Mr Soop at Salford hospital. He is very negative about surgery and is really putting me of. He says that he would do three surgeries. one to see if I have crohns even though I have been diagnosed with ulcerative colitis. He says I might need a pwo bag for life. At first he said my schfinkter muscles might be too weak. I had a test done and they are fine. Now he is saying that if he does the surgery he might find it is impossible do the pouch. He is so negative he is really putting me of but I need surgery. He is also saying there could be many complications after with the pouch. my mind is in turmoil with it all.

Wish I seen this earlier. My son,'s local hosp who did the original emergency ileostomy were ok and did the first surgery which saved his life because unfortunately he had perforated, were very negative about reversal too. We were fortunate enough to have a friend who had had a reversal in Oxford. We knew that after 3 years it was still perfect and this was woman 20 years older than my son. She could not speak more highly of the surgeon and the aftercare etc and her life was back to normal. So my son was not able to choose to have the colon removed and stoma made, as it was an emergency but he could choose to have the reversal and we spent some time researching and he was determined. The consultant said he would do 3 small ops and that he had done the surgery 100s of times with great success. I was the taxi and support and sat with him during the consultations and I was full of confidence. He was told that if something happened and he wasn't happy with the pouch he could go back to a stoma easily. He had retained his anus and muscles during the ileostomy and the pouch is connected to the top of the rectum internally so he squeezes his muscles and empties the pouch. He sits to use the loo just as before. Prof Mortensen was one of the original developers of the reversal system and worked at St Marks London and then went to John Radcliffe Oxford to be Cons Surgeon there, it is now a world renowned Gastro dept. It is the diffence between buying a Mercedes and an old banger, you need to go to the best and luckily the NHS allows referrals to any hosp for further treatment. My son goes to the gym, plays hours of sport and works 12 hour days as a coach, and he would not have been able to do this with UC or a stoma. I forgot to say his first hosp said he might be UC or Crohns but Oxford said he was defo UC after a short test so could be reversed. Sheila.

Thank you so much for your reply. it is really helpful to talk to someone who has experience of this. Your son sounds like he is doing really well and that's thanks to your support no doubt. I was originally refereed to professor Carlson at Salford hospital but they made me an appointment with Mr Soop. It seems that I cannot see who I want. Could you tell me please what the test was that your son had done to determine that it was uc and not crohns.

Hi Tina, it is a difficult situation you are in as you are having to choose and it's a hard choice. I am a scientist and it is important to research and weigh up the options. As my son went straight from no UC to mild symptoms to severe, no meds working, in hosp on Infliximab and on drips to rehydrate etc it was a steep learning curve. He was infused with iron, organs closing down, completely muscle wasted, 2 stone lost, tons of pain and fed through his neck. The surgeons were saying you need surgery now just need to decide open or key hole. Unfortunately they carried on with Infliximab for a bit longer as his body was responding but overnight he perforated in 2 places and his abdomen filled with his food waste. I tell you this to show you that you are lucky you have time to get the info you need. His general hospital said his IBD was indeterminate, ie not sure if UC or Crohns, but we spoke to an experienced IBD nurse who said if you go somewhere more specialist then they can test and be sure. So we went to John Radcliffe Oxford and they said he was UC. I dont know how they made that decision but it was the same appointment, so it could have been experience or a blood test. Maybe as he had had his large colon removed they were able to tell from what was left. I would think that if you rang the GI dept at Oxford they could tell you.

As soon as he was well again he went back to Oxford and discussed his options after the ileostomy was healed. He was advised that they would recommend further surgery to remove his stump anyway as it could develop cancer. The Surgeon does several different pouch formations depending on the patients' needs. My son had the j pouch.

I joined several different forums online in order to get some feedback from some people who had had surgery. It felt better to hear from people who had had the ileostomy and stoma and were happy with their results. There are fewer people who have had reversal by pouch than who had ileostomy and for some it didn't work as well as they hoped. Some get pouchitis or leak and have accidents but some are perfectly fine.

My son made the reversal decision by discussing with his Consultant and specialist nurse about his needs. He was so active that he found the stoma bag inconvenient. He was with a longterm girlfriend and he found intimacy difficult. It helped to know someone who had had the pouch op successfully. He knew he had to have some further surgery to remove the stump so having the pouch formation and then joining up to the small intestine later when everything is healed and watertight, through the ileostomy and stoma scars didn't seem that bad. I think knowing that if things didn't work out with the pouch and so he could go back to a stoma was the clincher. They also said they have almost 100% success and haven't had any incidence of pouchitis leading to pouch failure. Some pouches are less successful if the patient had cancer rather than UC.

The positives he found straight away after the ileostomy were that he was able to eat more or less normally, put on weight, take only a small amount of meds to help with the symptoms from the stump and not be in pain and running to the loo frequently.

The positives of the pouch were that he looks normal, he is in control of his bowels, no meds and able to exercise and have relations as before, just like when he had no disease.

We would both say that we are so grateful to the NHS and the skilful surgeons who saved his life and cleared him from UC and put him back together.

Also if we had more time in the beginning we would have gone to a specialist department where they do frequent ileostomy surgery rather than a general surgeon who did a good job and there were no adhesions but he wasn't able to say it was UC only and the aftercare wasn't great.

You can do your research now and decide what is best for you. Your GP can refer you to any NHS Hospital because of Patient Choice. I wish you the best of luck.

Sheila.

Thanks for your detailed reply Shelia and for taking the time. It is much appreciated. You have given me a lot to think about. I think the surgeon that I am seeing is a general surgeon. I think I need to find a forum to be able to speak to people who have had surgery, a bag and a pouch. it is encouraging that your son is doing so well and I think a large part of this is due to your support.

Hi Tina , thanks for your nice reply. The John Radcliffe Hospital, Oxford runs a Kangaroo Club for people who are wanting to find out about pouch surgery. You can contact them online. It is a closed group and gives people the opportunity to talk to each other and share their personal experiences.

The IBD nurses are very experienced too and can answer any enquiries I'm sure.

Good luck again, Sheila.

Thanks Shelia and thank you for your reply. I will check out the Kangaroo club and and see what I can find out.