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Time for surgery?

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Ulcerative Colitis
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Posted 1/28/2022 9:30 PM (GMT 0)
UC for 22 years. Meds that have failed me are: asacol, Imuran, stelara, entyvio, humira and now inflixamab (remicade). I have been dependent upon high dose prednisone for 4 years now, most of that time I have been on 40mg/day, with the failed tapers, and back on it now to get me out of this flare. So I'm steroid dependent, and almost steroid resistent because 40mg barely gets me out of the flare. Only med option is Xeljanz, and it is high risk. I have a cardiac stent (6 years ago) and am stable and am a cyclist in good shape, as far as that is concerned. I don't think I want toxic meds any longer, maybe surgery is best. I can'tr stand the thought of a bag though, and I know alot of this is vanity, but that's where I am. I am 58 years old, a hard working Nurse, and am looking for any info, support, warnings I can get. I have a video visit with U-M colorectal next Friday to discuss that option.
Thanks in advance, so darn tired of this disease

Deacon
Posted 1/29/2022 1:01 AM (GMT 0)
Xeljanz worked for me when no biologics did. You'd have to discuss your risks with your doctor, of course.
Posted 1/29/2022 3:14 AM (GMT 0)
After 32 yrs of UC I had colon removed in 2018. It was time. I decided against Humira or Remi,had been on enough meds in my lifetime. I was 59 yo, male, good shape but so tired of the daily torture that is the UC life. Colon was very scared at last colonoscopy. Both Gastroenterologist and surgeon agreed surgery was best option. Best decision I ever made. No anxiety, no meds, no accidents, no more holding me hostage.Bag was pretty simple,u get used to it. I had it for 7 months I have my life back now. Hope the best for you. God bless. Be well
Posted 1/29/2022 2:56 PM (GMT 0)
Why is jpouch not an option?
Posted 1/30/2022 3:58 AM (GMT 0)
I am also curious why jpouch is not an option, but I also think xeljanz could be a great option. It's really about you at this point. All I can say is that the high doses of pred for years are the worst thing for you. You need to move on to finding a solution. If you're not comfortable with xeljanz, there may be some other options that are newer. If you're really over it, surgery could be an option, but after surgery, you will go more, which could be annoying with a nurses busy schedule. You really have to do your research and see what you think will be best for you. I am sorry you're at this crossroads.
Posted 1/30/2022 5:05 AM (GMT 0)
I am a 63 year old female who had to get an ostomy and no J pouch so permanent bag. None of the drugs were working. I fought the thought and was close to death when I finally gave in. It took a couple months to get use to and I was miserable at first, but now I realize it was much better then suffering. Also, the drugs, do take a toll on your body. I think it is something everyone has to decide for themselves but if this helps you at all I am glad. Life is too short to suffer in pain. God bless you and hope you do well.
Posted 1/30/2022 3:21 PM (GMT 0)
Could deacon blues be saying a temporary bag?? And eventually a j pouch?? Am I reading it wrong??
Posted 1/30/2022 3:38 PM (GMT 0)
I have a family member who is a GI ...we are both determined that he is NOT my doctor... but for what it's worth he said he had several patients come into his office post-surgery and say "Why didn't you do this years ago?" Because they felt so much better.

Xeljanz has been an absolute game changer for me - it worked when nothing else would put me in remission. But if i had heart/circulatory issues i would definitely think twice and take the advice of my specialist.
Posted 1/31/2022 11:45 AM (GMT 0)
maybe Ftm is an option, My GI told me that there are lot of patient who tried more medicines which has not worked for them and some of them made Ftm after this that medincine what he took started to work.
Posted 2/1/2022 11:43 AM (GMT 0)
Thanks for all the replies! FTM is not an option, infectious disease department won't even consider it. I go to U of M Gastro in Ann Arbor, Mi. I am meeting with Surgical Team this Friday to see what they say. My current thoughts are, if I am going for surgery I am going all the way. I do not want to have surgery only to come out of that and have to take more of these toxic drugs and deal with left over parts getting inflamed and such. Take it all or take none is what I am thinking. If I am going to have to take toxic drugs, for parts left over, I may as well keep taking risks and try Xeljanz with all of its potential side effects. My chosen occupation as Nurse is a factor as well. I don't know how I would function as busy as I am if an ostomy bag required constant maintenance, emptying. If I had the option to retire and just deal with this one issue, in some way, I would be in a better place.
Posted 2/1/2022 2:12 PM (GMT 0)
What is FTM?
Posted 2/1/2022 3:58 PM (GMT 0)

CCinPA said...
What is FTM?

FMT? (as in fecal transplant?) Fwiw my hospital does those but only in patients with mild/moderate disease. Not severe cases.
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