Surgery when you "only" have proctitis?

Sounds like you are being really smart about everything. If Xeljanz really starts kicking in, it's a no brainer. Let it work it's magic for as long as it can. If it doesn't you've already figured out the surgery path. Either way, you should be looking forward to some relief in the near future.

Hi all, time for another little update. I have been on xeljanz for 12 weeks now. Since I last wrote I also had an appointment with the stoma nurse, I have to say she was WAY more helpful than the surgeon in answering my questions about life after surgery and living with a stoma. I learned a lot. I didn't even plan many questions in advance (I thought I only cared about can i wear tight clothes and can i do dancing, but while we were talking a ton of other questions came up, e.g. does the bag inflate on an aeroplane (the answer is no apparently)). The surgeon was just trying to kick me out of his office as fast as possible because he was running behind schedule, and once he'd deemed my situation as not urgently needing surgery, he didn't see the need to discuss further.

Anyway. In the last week I had a small uptick in symptoms. Or at least, no further improvement and some days with 4BMs and pain. According to my poop chart, the average # of BMs per day has been stuck at 3 for a few weeks now. In my moments of panic I considered emailing the dr and telling him I think I am flaring, but we actually have an appointment next week so I figured it can wait. On monday I submitted a fecal sample for calprotectin. Just got the results - 140. I am in shock. I had to re-check several times that i didn't read the number wrong. I never had a number below 550 since I was diagnosed and in week 3 of xeljanz it was 1600. I am mostly shocked because the improvement in my symptoms is less than that of the calprotectin, and historically it has been the other way around. I am still afraid to let myself believe it's real. I hope the dr will send me for a scope (flex sig) - at our last appointment he said we might do this, depending on how things progress. So as you can imagine my emotions are a bit all over the place, because I keep having episodes where I am convinced that I am still flaring and it will never end.

Thanks again for your support on here - has been much appreciated (in a world where I can't fully discuss my situation with the people around me).

Sounds like cause to be cautiously-optimistic that you're on the right path! 3 bms is a pretty good place to be in, healing is a slow process and might take a few more months, and/or require another med in addition to xeljanz. You've got plan B covered, if you suddenly get a lot worse too.

Mornings are very problematic for us, a series of bms (2-4) closely clustered together in the morning. You just wakeup extra early to have extra time for poops before leaving.

In a remission 1-2 poops a day is common, without urgency or other symptoms.

Surgeons and other specialist doctors are often kinda gruff. He/she often deals with IBD patients who are really bad off. As he/she didn't get that from you, he/she didn't expect you back. Given, if you were to flare badly again you altready have the contact and info, so it'd be easier then. Hopefully you don't need it, but if you then at least you're prepared.

Hi I have been to the dr (GI) today. He is happy with my progress but now discussing about reducing the dose of xeljanz - because the induction dose (2x10mg) has been identified with increased thrombosis in patients with arthritis. The recommended maintenance dose is 2x5 mg and does not have the thrombosis risk. I understand his POV but I feel anxious about this - it's the first time in 3 years that a drug worked for me and I can have a quality of life and reducing the dose would risk messing all that up....and the thought of another x months of living with anxiety and symptoms is not appealing.... anyhow. I asked if we can do a scope first before changing anything. He agreed that was a good idea.
One of the problems is that he has no experience with this drug....he has a few other patients on xeljanz but they were all fast responders... I am the first case he has seen with a slow (5 weeks+) and gradual response...so he said he is learning from me. And therefore it's all an experiment what to do with the dosage. I may start another thread to ask about this. I'm especially interested in the lady whose husband has been in remission for 3 years on xeljanz but i forget her name....his situation is closest to mine. The others on here who responded to xeljanz all seem to have a massive turnaround in 1 week which was not my experience. As mentioned, i have no other options re medications, it's this or surgery.

Thanks a lot! I will try a new thread and see if it catches her attention

I'm not sure they'll do an unsedated colonoscopy. I've had unsedated sigmoidoscopies before, and at least for me, they are not bothersome when I have minimal to no inflammation (with moderate to severe inflammation they hurt).

No neighbors, or anyone you know who'll go?

Thanks both. Yea it's a sigmoidoscopy. I barely know my neighbours to be comfortable asking them. The thing is having a probe shoved up your butt is a bit personal and not something i want to share with most. Also I really hate being a burden to other people with this kind of stuff. I asked one of my colleagues at work today if she was available (she came last time), she cringed and said not really and then that makes me even more hesitant to try someone else.

I hate finding rides too. I don't care too much about butt stuff any more than I would care if I needed a ride to ER for appendix. But I hate asking in general.

You may have some non-emergency medical transportation (NEMT) coverage from your insurance or medicare. For discussion see, https://www.ecolane.com/blog/non-emergency-medical-transportation-rates

You might be able to find a Uber of Lyft driver who will agree to walk you to your door, and say so when picking you up. The standard seems to be a responsible adult who will drive and walk you to your door.

In fact some insurance companies that cover NEMT are experimenting with Lyft.(See: https://www.healthaffairs.org/do/10.1377/hblog20180907.685440/full/)

Hi thanks a lot for all the info. I live in europe so would have to check for equivalent schemes here. Although at the moment I am leaning towards just doing it without sedation as that will be the least hassle.

Awesome news!

Mayo score of zero should be a remission. Congrats
Glad things went fine without the sedation. I've done that before with flex-sigs and many here called me crazy.