UC SURGERY

Hi Helena, can sympathise with you completely. I was in a similar situation, I was bleeding for 6 mths, couldn't leave the house, off sick from work, bleeding.....everything they tried just didn't work and I was reluctant to have surgery but then I just got to a point where I thought, enough is enough! I did a lot of research, asked a lot or questions to people that had an ileostomy, I even sat down with the surgeon and stoma nurse before I made my decision! For me it was the emotional factor of how will I deal with it, mentally and logically I knew it was probably the only thing that would save me.

I am now 9 weeks post opp and I can honestly say I don't know why I didn't do this earlier. I too couldn't have key hole just for the fact that my colon was to swollen and close to perforating, but it went well. The stoma regime at first takes time to get used to but I'm a whizz now! There will be pain after surgery but thats expected, it's more pain from the stitches but your well medicated for that.

Stop looking at photos on the net, it's not going to make you feel better. Alternatively you can look at bag covers to cover your stoma bag that you can get! 😉

Your not alone Helana x

Hi Helena108

I feel your pain I had a flare while pregnant at 7 months which continued for another 9 months of bleeding running to the toilet up to 20 times per day I tried all the meds and steroids and nothing was working I was so desperate to get better and tried everything the docs said and natural but think the writing was on the wall that surgery will happen it did in sept 2015 I was in hospital for 16 days Day 8 had my large colon removed have got a scar however I have heard better way than keyhole as they can see more of what is damaged .. and yes it's a battle scar of a memory which saved my life on the 15th sept my stoma aka tinker was born as lady I knew had a permanent stoma and said it's your friend not enemy which she was totally right so for me mentally I didn't think I could cope but you will at first it's pretty scary but think no more running to the toilet feeling like death everyday life is 100 times easier with a stoma I promise and like you have been told the recovery process mine was the same by week 6 you will do and be so much better i was petried but if I knew then what I know now I also wouldn't of let it go on for so long please try not to be scared it's just getting your head about of the acceptance of a bag but in the grand scheme of things it's a small price to pay to live your life how you deserve to .. I have had mine for over a year now and been waiting to fall pregnant and just got my wish so new journey for new baby and tinker and then after I will look into the j pouch can you have the reversal ? . X you aren't alone and we are here to support you chin up things will be ok x

Hi Helena, UC is certainly a difficult disease to go through. My son is 3 years post illeostomy and fighting fit. He has a long scar but now has a six pack and no disease, drugs or symptoms. He eats anything apart from mushrooms!

A few things to beware of, don't perforate, it makes life more complicated! He was in hosp on drips as on a massive flare, Infliximab being tried as final resort to save colon. They left him too long and he perforated in 2 places at night and left him in pain so sugery became an emergency. To be avoided as recovery was long as developed peritonitis and internal abcesesses etc. He went home full of pain relief and anti biotics. He was able to walk around and coped well with  the stoma. He was keen to investigate reversal surgery and had a j pouch after 12 months which has been v successful. So they removed the last part of the colon but he retained his anal muscles so he is able to control his output and has no accidents. He also had a mucous fistula formed during ileostomy which was close to his stoma which made the bag difficult to locate sometimes. Some surgeons do this differently I have heard, worth asking about.  He had symptoms from his last part of colon until they removed it during j pouch surgery and had to use suppositories to control blood and mucous. He would sit down and pass some of this. He had a dressing on fistula too. They said at John Radcliffe Hosp oxford where they did his J pouch, World experts that he would have last part of colon removed anyway as more likely to get cancer if left.

He has no regrets at all as has normal pain free life, only a scar to show for his disease. He is so glad to have left the pain and horrid meds behind, esp the side effects, and eats anything and enjoys his food! He had lost 3 stone as v poorly but has regained it all, goes to the gym and swims etc, no qualms about people knowing about the whole journey. The initial surgery is tough but it has the benefit of removing the dangerous part of the disease and controlling the worst part of the symptoms and you become in control. 

Do be aware that IBD sufferers have 3x more likelihood of developing a blood clot after surgery, ask questions and make sure they monitor risk. Son had this as a complication and has had to have surgery to deal wih it.

He feels that the surgery to remove his colon was the beginning of his recovery and is positive about it. 

I wish you luck in your decisions, I have written lots on here as I wanted to find some feedback from people with a stoma and then a j pouch to get advice. We have learnt alot and want to pass on our good outcomes. Let us know how you get on.

Hi Helena - I had an Ileostomy 14 months ago having battled UC for 4 years. I was so poorly I'd have signed up for anything at the time. To be honest having surgery was one of the best moves I've ever made. I feel in good shape and have left the drugs behind; steroids, immunosuppressants, Infliximab etc. Okay, I accept having a Stoma isn't ideal and going to the loo is different but I have coped well and can eat just about anything and participate in physical activity as before. It takes a while to recover and build up confidence but unless I confide in people they don't know I've got a Stoma. In many Amy's I've found the surgery liberating.

Good luck & take care.

Hi all ive had colitis pretty much non stop for 3 years. Ive tried all kinds of treatments which didnt work. I've been on infliximab (remicade) for about 2 years which i think is gradually wearing off. Im thinking about surgery to end this horrible disease once and for all but im terrified. lol my wife keeps telling me to just do it il feel alot better but its easy for her to say as she wont be stuck with a bag for the rest of her life. Im worried about how it will affect our relationship if you know what i mean she seems fine with all this and is really supportive but when the time comes and the bags there she may not feel so sure. I also worry of the increased risk of bowel cancer and the damage all these meds have done to me over the years. Im sick of running to the toilet all the time i never really go out and socialise like i used to because its not worth the hassle the next day or when im out finding a clean private toilet.