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How did you decide when to have surgery?

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Ulcerative Colitis
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Rachel5917
New Member
Joined : Sep 2020
Posts : 2
Posted 9/10/2020 7:43 AM (GMT -7)
I was diagnosed 8 years ago and have failed on every treatment I've tried. They have either failed to control my inflammation or caused dangerous side effects. It has been pretty brutal. Next up is adding Remicade to the Imuran and Canasa suppositories I already take. After that, Xeljanz is the last option, but my doctor has warned me that it comes with a black box label.
Due to previous abdominal surgeries, I am not a candidate for a J pouch. Part of me thinks I should try to exhaust every option before surgery. Another part of me thinks I should just bite the bullet and have the surgery sooner, while I'm already working from home due to the pandemic. I am really over medication side effects, but I know ileostomies are not without complications and major lifestyle changes either.
Folks who had the option of making the decision, how did you decide when it was time? What are your thoughts?
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 871
Posted 9/10/2020 8:21 AM (GMT -7)
I suspect you might have more options than remicade and xeljanz (e.g. did you already try stelara?). Yes xeljanz comes with a black box warning and none of the drugs are risk-free, but neither is surgery....
I have been on xeljanz for 18 months. I was arranging to go for surgery when the xeljanz decided to start working (around 6 weeks after starting it...most responders feel a change in the first week)
The risk with xeljanz is associated with the 2x 10mg dose (per day). That is generally used to induce remission for the first 2-4 months. After reaching remission you can taper down to 2 x5mg per day which is safer.
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Rachel5917
New Member
Joined : Sep 2020
Posts : 2
Posted 9/10/2020 9:40 AM (GMT -7)
Yup. All of the 5 ASAs, Imuran, Humira, Entyvio, Stelara, Uceris, Entocort, Prednisone (of course), Rifaximin, Azythromicin and Flagyl, and all of the diet and supplement stuff (SCD, FODMAP etc). Unfortunately, none of it has kept me in remission for long. I've now been in this most recent flare and on steroids for over a year.
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quincy
Elite Member
Joined : May 2003
Posts : 32474
Posted 9/10/2020 9:56 AM (GMT -7)
I suggest you touch base in the Ostomy forum here on more questions you have about surgery and lifestyle. It would be a good resource to start.

In the 17 years here...I've rarely heard anyone mention regret of having surgery. Actually the statement of wishing it was done long before is most usual afterward, even if there are complications subjectively during healing. Remember that some on this forum also have Crohns Colitis...so other CD issues can be continual even after surgery.

If the meds have caused you serious issues...my thoughts are that ultimately, surgery is a definitive.
At the very least...do all the surgery homework and mental prep, etc.

q
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tiredofallthispoop
Regular Member
Joined : Jan 2017
Posts : 208
Posted 9/12/2020 7:50 AM (GMT -7)
I am following in your footsteps. I know that people say they wonder why they waited but on the other hand I keep seeing a lot of people with a lot of issues after surgery so... I plan on staying on steroids as long as possible!! And it's not like we can go out anywhere anyhow...
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17743
Posted 9/13/2020 9:04 AM (GMT -7)
I knew I didn't want to take steroids ever again. That made the decision easy for me. I was carrying a lot of extra weight and I hated the way I looked. I didn't want to commit to a life of being overweight and the struggles associated with that. Granted, I was still average size by medical documentation, but the weight looked terrible on my petite frame...

I have been very lucky, no issues since surgery. The surgeries themselves weren't easy and the loop ileo was the worst, but the end ileo was quite easy. If you do a one-step to a proper end ileo, you might end up very happy and feel like you've gotten your life back. One thing you might want to try is wearing a ostomy bag under your clothes to see how you feel.

Ostomies have their challenges, as do jpouches, as does living with uc. Ostomy can make noise, fill with air, need emptying at changing at inconvenient times, requires supplies... Jpouch, you go a lot and people have issues with looseness and anus burning, I clean the toilet a lot but I did that with uc too. With uc, it's drugs, doctors, expenses associated with those things... Uc also means unpredictable, potential for accidents, pain, symptoms, frequency, cramping... They all have ups and downs but living with uncontrolled uc, and steroids, for me, wasn't something I was willing to do. Good luck and let me know if you have questions.

Another thing to think about is age. Surgeries and healing only get more difficult as you get older, so if you think it's only a matter of time, might as well do it sooner. I always felt like I was headed to surgery, and I am sure if I had somehow squeezed my way out of my last flare up, it would have only brought me a short time of remission, then I'd be back at it without anything working and back on steroids and overweight. Not how I want to live my life.

Living with UC there are some positives. The potential for a cure, or a long remission, new drugs. You have to be willing to accept never being back to 'normal' to have surgery.
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Nodnarb85
New Member
Joined : Sep 2020
Posts : 6
Posted 9/13/2020 6:21 PM (GMT -7)
Back in 2008-2010, I tried all of the mesalamines on the market and Imuran. Last step was Remicade (other biologics and TNF inhibitors were not yet on the market). I started on 120 mg of Prednisone and could only go down to 60 mg/daily before I'd begin to flare again.

So I opted for surgery. I had ileorectal anastomosis, which is not the surgery of choice anymore, but it was one-step and the best decision I ever made. I regained my life and energy and have been virtually med-free for the most part. I wish I had done surgery sooner.

I tend to go to the bathroom 3-5 times daily now (closer to the 3x mark on good days), with minimal to no urgency unless I ate something that disagrees with me.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16177
Posted 9/14/2020 6:35 AM (GMT -7)
I'd go with the surgery.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 871
Posted 9/15/2020 12:51 AM (GMT -7)

iPoop said...
I'd go with the surgery.


Even though she didn't try xeljanz?
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17743
Posted 9/16/2020 6:47 AM (GMT -7)
If you're down to one medical option, id personally at least, consult with some surgeons and start getting my head wrapped around what that entails. Even if xeljanz is the magic bullet, it may not, and probably won't, work for you forever. It's good to have a realistic idea of what may be coming your way regarding surgery. Of course, new meds are always in the pipeline, so keep that in the back of your mind when you're consulting. I thought I'd have surgery and the following day there would be a cure. It's been 5 years and not much has changed.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8580
Posted 9/16/2020 9:28 PM (GMT -7)
hey Rachel - sorry you are running out of options - that can't be easy -

i say go for the surgery, get healthy again, and don't look back -

i've been around a while, and i would need thirty hands (or more) to count the number of times i've read the words, " i wish i had done it sooner" -

good luck -

TT
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Hambo88
Regular Member
Joined : Feb 2018
Posts : 112
Posted 9/17/2020 3:30 PM (GMT -7)
everybody invidual..in ny opinion surgery is a big risk and after you may have lot of problem which you can not solve easily...
year by year coming new medicine to the market...you can try more kind of diets which can help you...dod you try any if them?
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1653
Posted 9/17/2020 7:24 PM (GMT -7)
Had UC 32 yrs. colon looked horrible and wasn’t working great. So in 2018 my gastro,me and surgeon agreed surgery was best. I only tried 6 mp. Didn’t want to try meds humira or remi. No complications. All good for me. I have 2-4 BMs a day. All controllable No more daily anxiety worrying about accidents. Life is good again. Good luck
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ByeByeUC
Veteran Member
Joined : Feb 2011
Posts : 4572
Posted 9/22/2020 3:31 PM (GMT -7)
I suffered for 7 years with severe UC. It came on fast and strong and never let up. I went through all the remedies that were available at the time. All failed. I didn’t have much choice. I had j pouch surgery 10 years ago and it’s been a God send! Even if I wasn’t a candidate for a j pouch I would have had to have surgery and gotten used to life with an ostomy. Anything is better than living with severe UC. Do your homework and talk to people that have been through it and live it everyday. There are risks with any kind of surgery. Probably not a good idea to take advice on surgery from people who have no experience with it. Best of luck!
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