Surgery when you "only" have proctitis?

Poopydoop, could you remind us which medications you've tried and failed? And which medications and dosages you are currently on? I cannot remember all of your details, and just wondering if you've tried everything or not already.

BTW, creating a signature on this forum with that info, saves us all from asking you this repeatedly. Click the My Profile link. Edit Profile link, enter your meds within the Signature box, and then click submit. Thanks

Ok that works. This is more for privacy that I didn't want all my details in the signature.

Have previously tried:
salofalk (did nothing)
cortiment 9mg (did nothing)
prednisone (became steroid dependent `+ osteoporosis)
azathioprine at various doses, including azathioprine + allopurinol (could not get below 15mg pred)
infliximab 5mg/kg (mother of all flares after stopping mesalazine and reducing pred from 15 to 5mg) then 10mg/kg (could not stop pred)
entyvio 4 infusions (weaned off pred but still too many QoL limitations)

Now on mesavant 4.8g and xeljanz 2x10mg/day.

Edited for extra details re dosing

Post Edited (poopydoop) : 2/13/2019 3:18:38 PM (GMT-7)

If you never want to take pred again, perhaps surgery is a good solution. It's really the only solution that will get you away from thinking about UC and having it in the shadows controlling your life. I know when I was medically treated, I was always worried about the next flare, the next drug, or the next time I would need prednisone. I don't even think about these things now... Perhaps I am just neurotic and other people walk around without a care in the world while in remission, but for me, I was never able to feel free of UC. Having a scope every year or every other year, infusions, blood draws, seeing doctors, yuck. No one wants to deal with all that for the rest of their lives. I'd rather go to the toilet a few extra times a day. I would imagine myself elderly with a flare up and it sounds so unappealing.

notsosicklygirl said...
If you never want to take pred again, perhaps surgery is a good solution.

Yes and no, i mean if i would get a 5 year solid remission from xeljanz i would take that over surgery. And in future i would only be willing to try fast-acting drugs with no pred as a bridge. If that's not an option then i would do surgery. I do agree, I find the psychological aspects of dealing with this disease - constant anxiety and uncertainty - at least as bad as the physical aspects.

If you're okay with temporary solutions, I think it's worth it to continue trying everything and anything. There are also clinical trials that may be of interest.

poopydoop said...
I'm not interested im cycling tournaments or marathons (what his surgery patients are doing), i want to dance and wear tight clothes etc and if there are too many sacrifices with those aspects i am not sure i would be happier after surgery.

You should be able to dance and wear tight clothes after the take-down, when you have a fully functioning j-pouch.

Given, you will have an ostomy appliance at the beginning, and that'd be difficult to hide under tight clothing (although an ostomy is hardly anything to be ashamed of, a holster can hold it where needed). Typically the surgery is 1, 2, or 3 steps. 3 steps is the most common with UC patients like us, and you'd have an ostomy after steps 1 and 2, and a fully functioning j-pouch after step 3. With a j-pouch you can wear skimpy swimwear or tight clothing and nobody would ever know you had a surgery. All you have on your lower abdomen is several small scars, each an inch or less in length.

What kind of dance do you do, if you don't mind me asking?

iPoop said...

What kind of dance do you do, if you don't mind me asking?

I do ballroom dancing You have to be in contact with the guy along pretty much the whole right side from the base of the ribs to the inside thigh. I am sceptical if this would work with an ostomy...

Since there is a not insignificant chance of landing with a permanent ostomy I feel it's important to be prepared for that eventuality, and so i would feel better if i had more certainty about what's possible with that. My impression was that the hospital here does it in 3 steps - as mentioned this is partly because 20% of people elect to keep the ostomy as they are happy with the status quo and don't want to risk further surgery.

Re surgical scars, are they really that small? I have seen a few photos where people had a long vertical scar running down from the navel. I wondered if everyone gets that or is that pre-laparoscopic surgery?

partlycloudy thanks this is very reassuring to hear. I went on an ostomy website and people were saying stuff like, no more low waisted jeans, no more tight trousers, no more figure hugging dresses etc. I agree there is no shame in having an ostomy and would not hide it e.g. in yoga class where i always wear crop tops. But in "normal" circumstances it could look weird to have a lump? and the point is i have a narrow frame but wide hips, and fitted clothes are the most flattering for that.

I just fake ballroom danced with my husband, pressing stoma against him really well, and it was fine! He was a little confused, but I told him it was for science. I also googled it and seems like other people do it without issue.

Laproscopic scars are four or five ~1 cm long and one for the stoma. I actually have another below my bikini line that's about 5 cm which was needed because my colon was so inflammed, they couldn't fit it through the stoma hole. The small scars are already pretty unnoticeable one month later and the big one wouldn't be seen by anyone except my husband.

I can wear low waisted or high waisted jeans easily. The only ones that I avoid are the ones that hit me exactly at the stoma, which is a little below my belly button. The lump from the appliance really does smooth out well with a wrap or some loose spanx. I can wear my tight dresses still, especially with patterned fabrics. One thing is the hospital might send you home with bags with a clip at the end. I found that this actually was more visible than the flange, but you can order ones that seal with velcro and don't show.

partlycloudy i am laughing at your ballroom dancing with your husband! glad that it worked though and than you for trying!!

nssg - thanks, it's good to get an impression of what it's like. The dr did say it would be laproscopic surgery.

iPoop said...

I couldn't dance to save my life. I've been known to step on toes...

I step on my partner's toes all the time. In ballroom we say it's the fault of the person who gets stepped on for not moving them out the way in time ;)

Hi thanks a lot, that's nice to know. Not that scars are the biggest deal in terms of everything else that's going on with surgery but it's an added positive if they are mostly invisible. By the way I checked your blog, you look exactly how i had imagined

hi, I came to post a little update. On friday I have an appointment with the surgeon to ask all my questions. However, I have had some signs that xeljanz might be working. I hardly dare to believe it is true, since I failed every drug before this, I am the patient who got labelled "a difficult case", and I remember flaring badly and suddenly after 8 weeks on infliximab which was one of the most soul-destroying experiences of my life. In fact I am sort of working with the assumption that it's not true...and will only believe it if I can go down to 1 BM per day and sustain it for months. I am even afraid of jinxing myself by telling you about it here.

My dr told me that with xeljanz most people feel a lot better within the first week. I had a tiny improvement in the first week, and then nothing.... my calprotectin was still 1600 in the 3rd week, up to 8 BMs per day... several near-accidents in the morning...so we kind of assumed the worst and he sent me off to see the surgeon. Then in the 5th week I had the feeling that maybe I have less pain than before. Last week (week 6) I sailed through my period with almost no pain (normally I have really bad abdominal pain during my period). Then I had a wobble for a few days with more pain and so I went back to thinking I will never get better... and now in the 7th week my latest calprotectin is 560. This is the lowest reading i ever had since the first one we took in 2016.

However I won't be convinced that it's real until we do a repeat measurement. Because the thing is the night before I had difficulty sleeping with severe abdominal pain. And then when I went to get the poop sample the next morning, it was full of pieces of olives that I hadn't digested from my dinner. So I am afraid that the lab has taken a calprotectin reading from crushed olives rather than fecal matter. Although maybe they do some processing of the sample first?

I kept a diary of number of BMs per day and did a statistical analysis (because they fluctuate so much) and if you look at those the average has been decreasing from about 5 to about 4, and the data is very noisy, so it is not conclusive at this stage.

I am also worried what will happen at 8 weeks since the guidelines say you should reduce the dose of xeljanz. I hope the dr will let me stay at the higher dose a bit longer to try to get a full remission.

I also hope that in writing this i didn't screw everything up and go back to a big flare tomorrow..

Thanks! I am sort of ok with the idea that I will have surgery eventually, but if xejanz would give me a few years of remission first, I will take it...