Progression of UC after colectomy?

Hi Cjb106

Sorry to hear you are having a rough time i have been there had a flare for 9months then surgery have had a total colectomy and it saved my life and gave it back to me it's hard at first but under the right care you will be ok.. I had my op at the uclh in London amazing doctors and surgeons so maybe look into it or st marks I know is very good.

I had uc which affects the large bowel once removed it cannot come back however I don't know about crohns as that affects all places of the body. But I don't think anyone can tell the future for what's ahead of us..

If you neeed anymore advice please let me know you are not alone take care x

Really sorry to hear you are having a bad flare. My Mother in law had ulcerative colitis for many years and it got to the point where she said her quality if life was non existent, with more and more stays in hospital, one being 8 weeks long she met with her Consultant and discussed the possibility of surgery. He gave her options and told her to take time to think about it. Anyway, she decided to go ahead with j pouch surgery which means her colon was removed and she still passes bowel movements the same way just more frequently. She doesn't suffer with ulcerative colitis anymore but she does occasionally get pouchitis which is soon resolved with a course of flagyl. She said it gave her her life back and was the right decision for her.

It's a shame your gastroenterologist has retired, hope that you find a new one who is just as good soon. Might the IBD Nurse be able to put you in touch with a gastroenterologist? I've been put in touch with an IBD Nurse whilst waiting for my follow up appointment and she has been really helpful because she works closely with the gastroenterologist and when I was concerned and had questions she went and asked the gastroenterologist for me and then relayed a response back to me.

Lou

Hi cjb106

I'm a nearly 61 year old (in June) woman & I've just had an ileostomy on 7th February. Your letter is not silly as it raises lots of issues we all think about. I too wondered what of the future? One thing I can state as fact, I no longer rush to the loo or worry that I don't make it in time as I have my bag & I have control of that. Since my op I've been diagnosed with indeterminate colitis Crohn's. So I'm unsure of the future at the moment but definitely No incontinence! I think you would benifit from support from a uk website that deals with Crohn's colitis. Also get back to Ibd department at hospital or your own gp & tell them how you feel. Any more questions to me , just ask, your not alone in this illness. B.

Hi Cjb, so sorry to hear of your woes, such a sh*t disease. I write on here as my son had UC and I was researching help for him and now I try to share our good results. My son was diagnosed with UC, medicated with steroids etc and then when they insisted he reduce doseage he was v ill and colon perforated. They removed the colon and he had a stoma and mucous fistula. He waited a year to heal fully and then had a j pouch at John radcliffe Oxford. He has never looked back, down to 4 loos a day, no meds, no food problems, no pain and NO accidents. He is so glad to have his new normal. They removed his rectum apart from the muscles, sewed up his MF and joined his pouch to his rectum in 2 short surgeries, 1 was keyhole. Quick recovery, short stays in hosp and all has been good ever since. JRO were so good in every way, made him feel confident from 1st consultation. St Marks are also highly recommended. Ask any questions you like. 

If you choose surgery go somewhere where they specialise and have excellent results. We have not been warned that he may have problems elsewhere in the gut, I have asked but either very rare or not heard about. 

The Crohns and colitis charity have a facebook page which is good. 

We were told 2 thirds of people with UC have surgery in the end. ( no joke intended). Some people write on here who have had surgery and are happy with their choice. Good luck to you. Sheila.

Hi Cjb, so sorry to hear of your woes, such a sh*t disease. I write on here as my son had UC and I was researching help for him and now I try to share our good results. My son was diagnosed with UC, medicated with steroids etc and then when they insisted he reduce doseage he was v ill and colon perforated. They removed the colon and he had a stoma and mucous fistula. He waited a year to heal fully and then had a j pouch at John radcliffe Oxford. He has never looked back, down to 4 loos a day, no meds, no food problems, no pain and NO accidents. He is so glad to have his new normal. They removed his rectum apart from the muscles, sewed up his MF and joined his pouch to his rectum in 2 short surgeries, 1 was keyhole. Quick recovery, short stays in hosp and all has been good ever since. JRO were so good in every way, made him feel confident from 1st consultation. St Marks are also highly recommended. Ask any questions you like. 

If you choose surgery go somewhere where they specialise and have excellent results. We have not been warned that he may have problems elsewhere in the gut, I have asked but either very rare or not heard about. 

The Crohns and colitis charity have a facebook page which is good. 

We were told 2 thirds of people with UC have surgery in the end. ( no joke intended). Some people write on here who have had surgery and are happy with their choice. Good luck to you. Sheila.

Thank you all for your replies which have answered some questions and prompted others. Apologies for not replying sooner. A mixed week in which I learned I have a bad reaction to Pentasa. It has caused excruciating back pain which left me three nights without sleep. As soon as I stopped the drug the pain went away. It’s there in the small print although my GP didn’t believe it. High dose steriods seem to be working though. Symptoms are easing and I have an appointment to see a new consultant next week where we can discuss alternative maintenance anti-inflammatories. Meantime the steriods have got me on an energy high and I am getting so many long-postponed domestic jobs done while I am building up the confidence to stray more than a few minutes from home. Thank you everyone for your support. It’s good to hear some positive stories about how surgery can give people their lives back if that’s what the long-term future holds for me.