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Ulcerative Colitis
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Posted 9/17/2015 8:38 PM (GMT 0)
I know this is a recurring topic on these forums, but obviously this is a big decision. I'm in the hospital at Walter Reed in Bethesda (I'm active duty Air Force) seeing if I respond to steroids after potentially failing Remicade. I've had 3 infusions so far, and ended up with my second C. Diff infection just a couple weeks ago. The antibiotics took care of the C. Diff, but I'm still flaring apart from that and my doctor is telling me that I'll have to get a colectomy if the steroids can't get my UC to a manageable state in the next couple of days. I didn't expect to have to consider surgery this soon, as I was only diagnosed in April of this year.

I know that surgery could be the best thing to happen to me, but it's still tough to wrap one's head around. I'm told that the surgeons here know what they're doing, but is there a large variance when it comes to quality of these surgeries? I've so far just been lurking and reading all your posts, but I love this community, and I appreciate any advice you guys can give, it means a lot.
Posted 9/17/2015 8:46 PM (GMT 0)
I am so sorry to hear this, and thank you for your service! I dont know how to answer this but I have read many times here that some have been close to surg and then have bounced back! Its a strange disease.

Have you tried all othe meds including butt meds???


I mean it looks like they went right for biologics and most people it works, But if u are like me and cant take biologics u have to try it other routes, not just straight to surgyry!!!!

Good luck!
Posted 9/17/2015 8:54 PM (GMT 0)
Thank you for your kind words DMC2011. I've tried Rowasa enemas combined with Apriso, and that didn't really help me much, so they went right to Remicade. They would like to ideally switch me over to Entyvio, but as you may know, it usually takes a few months to truly start working, so surgery might be the only option if I can't last that long.
Posted 9/17/2015 9:03 PM (GMT 0)
With c-diff in the picture, I would want to try FMT before surgery. I understand if you are bleeding too much, some options may be unavailable.

Steroids often buy some time.
Posted 9/17/2015 9:20 PM (GMT 0)
Thanks for your service
Can you add imuran or 6mp?
Also keep up with the Rowasa and asipraso as those will help somewhat unless you had a reaction to them
Make sure to research the best possibek surgeon
Posted 9/17/2015 9:26 PM (GMT 0)
Surgery will take lots if time too!
Posted 9/17/2015 9:34 PM (GMT 0)
Sorry to hear about your current situation. I agree with Dikid that immunosuppresants like 6mp or imuran may be an option for you. 6mp kept my symptoms in check for a long time and I am grateful for the drugs ability to get me in remission. They do take a long time to kick in though (several months). So it may be an option for you as you begin to taper your steroids assuming you get out of this flare soon. An immunosuppresant while on Remicade has proven to be more effective than remicade alone.

If you urgently need a colectomy and don't feel super comfortable with the CR skills of the surgeon, then I would probably ask for a colectomy with end ileostomy for now. That way, you could research and find an experienced jpouch surgeon (assuming that's what you're going for) you are comfortable with, and move forward with that person for the jpouch procedure since that's the more complicated part of the process.

I hope you feel better soon!
Posted 9/18/2015 12:13 AM (GMT 0)

DMC2011 said...
Surgery will take lots if time too!

not necessarily. Four months for me start to finish and it was back to my life as usual.

Handbanana,
I had j pouch surgery five years ago. It's been a God send! I know how scary it can be a believe me. But if the meds don't work for you and there's nothing else that you can do, it can be a blessing in disguise. If it's a j pouch that you would want then you need a colorectal surgeon that's done many of them. If you have any specific questions I would be happy to try and answer them for you.

Best of luck to you and thank you for your service!
Posted 9/18/2015 12:22 AM (GMT 0)
I hope this isn't out of line, but if it were me, I'd definitely want to know the answers to this: has anyone there talked to you about what surgery would mean for your military service? (I.e., would you be discharged with a ostomy but not a jpouch etc?). Hopefully the meds start to work and at least buy you some time to make the right decision for you.
Posted 9/18/2015 12:45 AM (GMT 0)
I was told the same thing when I was hospitalized in 2007. Thankfully I still have my colon. I did not let them talk me into surgery so quickly & believe me I was in severe shape. I'm not trying to talk you out of surgery, however, I do feel the hospital promotes surgery way too quickly as an option. There are more drugs you can try if you are willing. Also, are you being treated by your GI in the hospital? This is important because if the docs treating you are not your personal physicians, they don't really know your case on a personal level. When i was hospitalized, I went to one that my GI wasn't affiliated with. The docs in there were promoting surgery & when I spoke with my GI, he felt it was very premature. Just something to think about. There are other biologicals you can try that work faster than entyvio. You'll know if you are ready. Listen to your gut. Don't get talked into something you are not ready for. It is a life altering decision so if you can, do it on your terms.
Posted 9/18/2015 2:42 AM (GMT 0)
Thank you Rocker!!! Good luck OP!
Posted 9/18/2015 11:24 AM (GMT 0)
I would get the cdiff cleared up first, as it's symptoms mirror uc symptoms (and having repeated bouts of cdiff aren't unusual). Then, you'll have a good idea of where your uc actually stands. You could give remicade one more infusion, a double-dose, or move the infusion up sooner. There are other uc medications if you wanted to fight it out longer: Immunomodulators (Imuran, 6mp, aza), and Biologics (humira, simponi, and entvyio). Surgery is an option as well, some are just unresponsive to all uc medications, have a severe case of uc, and quickly end up with surgery. Whether that's you, I don't know. Certainly, it can be a whirlwind of trying different medications...
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