Surgery when you "only" have proctitis?

my feeling is you should look at all options available - as far as being a wuss, maybe, maybe not - and even if you are being a wuss, so what ? it's your body and your life - wanting to live as well as possible is pretty normal - and wanting the most normal life you can have, even more so - surgery certainly won't give you a "normal" life, but it may be a much better life than you currently are experiencing -

maybe you should re-visit some of those "quack options" again - some folks have had success going backward instead of forward -

It sounds like you have pancolitis, but the involvement at the moment is proctitis. In my opinion, the involvement isn't that important when it comes to surgery, what is important is the severity and your quality of life. If you're unable to do the things you want to, and you're giving up opportunities, missing out... Then surgery might be a good option. The problem with surgery is that there are no guarantees. Most people have surgery and I don't see them post here anymore, but it's not always the case, unfortunately. Life after surgery has some huge positives. I love being free of UC. I love not taking drugs, not going to the doctor, not worrying about accidents, but there are also some things that I don't love. I don't love knowing I will deal with poop 5 or 6x a day for the rest of my life. For me though, it's much better than "living" with UC. For me, I wasn't living.

We have a long time user here, suebear, she had surgery for a proctitis diagnosis. She never had involvement beyond her rectum. She always says how thankful she is for her j-pouch.

My rectum was always the worst too.

Hi thanks all...it's difficult to assess because I'm basically handicapped in the morning but pretty functional in the afternoon and evening. Since i started xeljanz 2 weeks ago i haven't had any bowel activity in the afternoon/evening but the mornings are just as difficult as ever. E.g. yesterday i went to the dentist at 9:00, that went fine so i decided to do a bit of shopping at a store down the road, realised once inside the store that i need to go to the toilet Right Now....i explained to the staff that i have inflammation in my bowel and i need to use the toilet really urgently...they said customers aren't allowed to use the toilet..had to run back to the dentist, luckily they have a toilet just behind the front door so it was ok...but I hate those situations...and i miss eating foods that aggravate it.. and I have pain at some level nearly all the time...and it stops me from long distance travelling which I really need to do for my job...so i am torn...because I'm quite fond of my colon too even though it's broken...and the question noone can answer for me is if i will (eventually) be able to do all physical activities as before surgery (including high intensity dancing). Well and also i have seen a couple of posts here where people said they were "in remission" but their symptoms sounded a bit like mine and that was where the wuss comment came from.
Re "alternative" methods...if they didn't work before i don't see why they would work now... some of them also made me really sick (e.g. 3 week experiment with chlorella, as recommended by my yoga teacher..)
And i cannot find the diet which works for me despite dabbling in paleo scd vegan ayurvedic organic gluten-free etc etc etc...
Notsosicklygirl, are the 5-6x BMs the only drawback you've experienced?

Quality of life is the key. If you have run out of medical options, and your quality of life is terrible, then surgery is really something to consider. I’m just over 4 months from my final surgery. The past year was long and the hardest year of my life, but I am so happy that I did it. I back training in the gym again, I’m able to do road trips, go to work without the constant fear of crapping my pants without a moments notice. I’ll never forget being at a construction site and having to run to my truck to see if I could drive to a toilet, and not making it. Then it happened again, and again, and again...... so many times I lost count. I was sooooo sick and not even prednisone was working anymore, I had no quality of life and I honestly looked forward to surgery. Like they say, life after surgery is not perfect. I’m going around 5 or 6 times a day, mostly in the evening, and I’m still battling some mild butt-burn, but I’m living life again. I’m a super active dude and I basically am able to do all the same stuff I did before I got sick. Just takes a little more planning. Honestly, I’m thinking about it less and less.

Going more often, yes, and having butt issues, like burning or itching, but those are easily rectified with cream. It's good to have something on hand for that, but it's literally 100x easier than even using a suppository or enema. I can't really complain - smearing a little cream on your butt isn't that difficult or awful. I also hate the sounds and the dirty toilet, but mine was dirty and noisy with UC regardless, so it's not something I could avoid by not having surgery. I was already cleaning and farting. At least i am not taking tons of drugs and seeing loads of doctors, and the worst was spending tons of money and feeling like being insured was my lifeline. I am done with all of that. Going #2 with a pouch is not the same as it was with a healthy colon. You don't sit and wait, you just relax and it empties. There's no waiting, but it can be noisy.

Ps this is the pole dancer although she seems to have a permanent ostomy rather than a j pouch
https://metro.co.uk/2018/08/08/pole-dancer-with-a-stoma-bag-defies-nurse-who-said-shed-never-wear-a-bikini-again-7807903/

I didn't have emergency surgery like many seem to have. As far as me it was time Pred had always brought me close to normal BM and it wasn't anymore. Last colonoscopy was a horror movie-very inflamed. So I had had enough. I had seen surgeons months before I finally made decision so once it was a go I just had to schedule surgery

Hi thank you for the answers. Last full colonoscopy was end of june which showed left-sided colitis to 40cm, feb 2018 28cm; perhaps calling it proctitis is sloppy (although thats what my dr is calling it) but it's the rectum which is badly ulcerated and giving me the symptoms which impact my life, higher up is "only" red with mild inflammation. I saw it myself during the rectoscope, as soon as you go above the rectum the ulcers disappear and it looks much more healthy. Also i had so many scopes i have learned to correlate my symptoms with what's happening inside my colon and my symptoms now are significantly better than when i had the scope with 28cm inflammation. So if we wanted to be really strict it's most likely a proctosigmoiditis....i have solid BMs and don't see blood since i started xeljanz. Just the mornings i am restricted by urgency and sometimes the pain bothers me throughout the day (although right now i have no pain).
Sometimes i think it would be good just to get the whole thing out then i don't have to worry about it any more. I have a really restricted diet and pretty sure surgery would allow me to eat more things that i really miss. At the same time it is very counter intuitive to voluntarily remove a major organ. And i honestly would not have considered my situation to be "bad" enough to require surgery if my dr didn't keep recommending it...
For now he's made an appointment for me to talk to a surgeon about how the surgery works. Then also the ostomy nurse. Then we meet again in 4 weeks to discuss. As long as my symptoms don't escalate it's a non urgent case.

That makes sense. it is prudent to see a surgeon, just to get an idea of what you could expect if surgery became inevitable, but it sounds like you're doing fairly well at the moment and it's not something worth considering. I was thinking earlier about whether I would wish I hadn't had surgery if there was suddenly a cure, and I don't think I would feel that way, simply because I would have lost the past 5 years i've been living med free and free of symptoms. Nothing will bring back the lost time, not even a working colon. I hope for a cure for all the sufferers, but I personally live quite well post-surgery. Even better than many live while in remission considering the dietary restrictions, the expense, the time implication of seeing doctors and having procedures, the implication of drugs on your body, the loss of predictability, the loss of confidence in yourself being able to work or travel... I can't see living like that. I feel like I am free again.

My GI always called mine proctitis too. Interesting how they always want to minimize it. I think mine really wanted to believe something was helping. You sound like you are more accepting of having your QoL impacted than I was.

I felt that way too for a while, like "well, I can just eat light and go a few more times a day", but toward the end, I was basically not eating for a day to make it through working in the mornings. I also have to factor in how much time I was spending, between preparing crazy foods and trying diets/supplments, to going to doctor appointments. I was going to various doctors quite frequently between the tests and treatments... I was also spending A LOT on this stuff. I hit my max out of pocket every year. The real clincher for me was the prednisone. I had gained weight and I was unhappy with my appearance, plus, it has long-term consequences. When I was finally off it, I promised myself never again - and I knew surgery was the only want to potentially avoid it forever.

I have to say, I don't appreciate eating whatever I want as much as I should. It's like I completely forgot I lived all those years without any "bad" foods, and bad was everything, from coffee to beans, to chocolate, to dairy. It was literally whatever I irrationally thought was bad that day, or week, or year. I went 10 years thinking the food was problematic. Never did any diet do much, unless I avoided food entirely.

Take it easy and see how you do. Maybe you will be 100% in a few weeks and stay that way forever with xeljanz. Maybe you will be one of the lucky ones where the diet suddenly becomes the magic bullet, you never know... Maybe another drug or clinical trial will come along and you will have it in you to give it another 6 months to a year of trying. Just don't give up 8 years like I did. It was at such a bad time for me too. I definitely would have advanced much further in my career if I were able to be more present.

Surgery found me relatively fast. My quality of life was terrible and I wasn’t getting any relief from the drugs. I agree with NSSG. At some point you have to decide what you are willing to live with. Having accidents in public, wearing diapers, being too sick and weak to enjoy anything. Those were the deal breakers for me. I suppose I could have waited longer and tried a bunch of crazy stuff. After failing all the meds and weird diets I threw at it, my gut was telling me (fantastic pun) it was time. I have no regrets. I’m glad I had the surgery as soon as I did, and I’m basically living my same pre UC life (minus the big salads and spicy Tai food).

Poopydoop, you could have written this post for me, almost word for word. I just emailed my GI today - 7 infusions in with Entyvio and still having blood/mucus, 1-3 solid stools per day, and urgency when going. It’s by far not the worst I’ve been, but running to the bathroom to pass mucus tinged with blood isn’t great, either. I find myself not wanting to give up on Entyvio too quickly and wondering if it’s unreasonable to expect remission/feeling “normal” with this disease. I don’t have dairy, gluten, coffee, chocolate, beans, cruciferous vegetables, etc etc and while all of those things are irritants for me, I do miss them. I do eat normally otherwise - salads, chips, nuts, meat, etc. are fine - but I just don’t know when I should be sucking it up, and when I should be saying enough is enough.

FWIW, my breaking point will be going back on steroids. No way, not happening. I’d literally rather surgery.