Pancolitis woes - considering total proctocolectomy with end ileostomy

Hello everyone. I've been a long term browser of this site, but only recently joined. I've had pancolitis now for around 4 years. In that time, I have been constantly flaring. I've failed imuran / azathriopine and 6mp. Im 36 years old, married, with 2 girls, 1 and a half, and 3 and a half. In that time, i've been unable to enjoy my children, and in all honesty have missed much of their short lives, being controlled by this disease. Now i know surgery is absolutely no walk in the park, and the possible complications that may come with it. Doctors want me to try the usual next steps, remicide, entyvio, etc. My dads side has a history of lymphoma in the family, and while I know chances of these other drugs causing such are limited, with that history in mind, its just an unnecessary risk i don't want to take and I have absolutely no interest in prolonging what will most likely end up a inevitable procedure someday. I recently had a 3 week hospital admission due to flare, and am back on the prednisone oral steroids again, which while they curb the urgency and frequency has not stopped blood. again i'm aware of the long term effects of staying on steroids. I was wondering if anyone was in the same position and took the same step when they were 'relatively' healthy and went ahead and got this operation done? I would rather go ahead and bite the bullet, when i'm relatively young and strong, which would hopefully help the healing process. My colon is inflamed from anus right the way through to the top, so I would want colon, rectum and anus all removed with anus sewn. Is it possible to get this done in one operation? The only real concern I have is healing of the closure of the anus, i know its a bit hit and miss down there. I would love to hear from anyone who was in a similar situation. Ive robbed my family of enough of my time, no holidays, no weekends away, no plans. enough is enough. apologies for the length of the post, and thanks in advance.

The cancer odds are very low, but with a history I don't know how I would feel, especially considering most of these options don't last forever. I hit a point where I felt like whatever I tried, eventually I'd be back at square one some day, and I didn't want to end up having major surgery later in life. I guess that is a negative perspective though, a lot of people do great on biologics for very long periods and there are new drugs coming down the pipeline all the time. That said, even with the new options that have come about over the past 10 or 20 years, the overall colectomy rate hasn't dropped, it's still about 25% for UCers.

I have seen people do the whole procedure in one step when they are 100% sure they want to go with an end ileo. It's not always the case, but look into past member EvaLou, she did it at once, and she's never turned back. Sh used to be a very active poster here, she had surgery, and moved on with her life entirely. She can spend more time with her family, travel, eat everything... much better quality of life. It's very independent on what you want. Some people have very mild UC and never have to worry about surgery, that's a large portion of people with UC, but I knew in my case, it would be a fight for the rest of my life if I didn't do something drastic. I haven't looked back.

I wish I tried different options of biological drugs, unfortunately, I waited too long and my disease eat away at my whole colon and by then the biological didn't have a chance I was sicker than I knew. I am trying not to be negative but do what you can to save your colon. Try everything first that way you have no regrets. And if you were to get a proctocolectomy can you do a J pouch. I had to do my in 3 steps because I was so sick in the beginning. It's not easy but compared to the life I was living before I am in a better place health wise. The last two months before surgery I couldn't leave home without having an accident of pure blood and stool no more than 5 mins away from home. I had no control what so ever, and the pain was unbearable. I was a prisoner in my own home, it was no way to live a life.

Regarding surgery emotionally its difficult to know you will never be the same again. That's why giving the biological drugs is a good start. I will forever blame myself for not trying them earlier on when my doctor suggested them. Like you cancer was always on my mind and I used to say I am not trading in one disease for another. But the last year of operations has been so difficult for my family and me. Every drug has risks but surgery has more.

Good luck and I hope it all works out.

Apologies for not getting back sooner. My Internet connection was acting like my colon the past few days. Firstly thank you all for your responses. Really great to read through them all, with all perspectives. I have a meeting with my consultant this week. My first request is going to be a colonoscopy to establish what exactly is going on in there. I'm in the UK and it seems to be a bit of a struggle to get them to give me a check. My last one was 3 years ago, so they are just of the opinion, you have uc, so here's the treatments you can have. In all honesty in the past few weeks, my mind has started to play tricks, and it's the what if questions are always there. What if there are polyps, what if there is cancer, blah blah blah. I'm going to be brutally honest and tell this to the consultant. A colonoscopy would really help me get back on track from a mental perspective and help me focus on what the next step is. If I see I'm in not awful shape internally, I'd be happy to give the entyvio a good go. If it's a mess, then let's see what's suggested. I've really come to despise my ass, so the thought of having nothing ever appear out of it again is totally appealing. If it goes that way I would definitely be going for a permanent bag. If im going to the bother, I want that bad boy closed up and left redundant, It's had its hay day, had so much potential but been an absolute disaster! It's the not knowing is starting to grate on me. I agree with comments about a colon in remission is better than no colon. And i agree if possible this is the avenue I need to go down. Thanks again for the responses. You have really no idea how much they are appreciated. Uc can be a lonely place. Not so lonely when people take time to respond and advise.

Post Edited (Steph6n) : 7/29/2018 4:04:51 PM (GMT-6)

Had an appointment with my consultant today. I had been more or less fighting with him to get a colonoscopy but basically told I didn't need one. Anyway went to appointment and my usual man was off. Luck have it, the head gastro man was covering him. Went in prepared for my usual fight, and sat down. Hadnt opened my mouth, and the first words the guy says is, hello, looks like you've had an awful year and are in pretty miserable shape, I hope you don't mind but I want to get an urgent colonoscopy done. I couldn't believe it and nearly fell of my seat. He examined x rays I had got done, and said he could clearly see formed stool in a large portion of my colon, and thought I was flaring only in the lower end, but again wanted to confirm with colonoscopy. He then went onto discuss how I'd failed imuran and 6mp and then said I want to get this colonoscopy done and move you straight to entyvio, I think you would be an excellent candidate. He discussed surgery possibility, basically covered everything, but said it was a last resort, and really felt entyvio could be the answer. It's amazing how much relief I am feeling from being listened to. How one person could make you feel like he was listening and actually genuinely cared. His last words to me before I left was, please try to stop worrying. It's my job to make you better, and I'll get you back to feeling normal as soon as I can. Bloody unbelievable, I'm in shock!

Amazing what a difference a competent and caring doctor can make in your outlook. He sounds like my first GI Doctor, Dr. Carr in Vancouver. A rare mix of brilliance, clinical skill and empathy. Sadly he died suddenly of cancer about a year after I came under his care. The last I heard they were going to name part of the new hospital after him. It would be well deserved.
Hopefully you can follow up with this new Doctor.