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Can't stop thinking about surgery

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Ulcerative Colitis
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Posted 8/23/2013 12:05 PM (GMT 0)
Does anyone obsess about it everyday like me? I am up at least three times a night for the bathroom, so quality of life sucks. Been told to do it by a couple of people who have j pouches, not on this board. Their lives are so much better. Still afraid though, but also obsess about cancer. I am driving myself crazy. Just on sulfa salazine now, but maybe I should give imuran another shot. Ugh.
Posted 8/23/2013 12:10 PM (GMT 0)
I think I'd at least schedule a consult with a surgeon. Good luck, whatever you decide!
Posted 8/23/2013 12:18 PM (GMT 0)
It doesn't sound like you have had the "Ah ha moment" yet when you just know you're ready. When I was ready there was no more going back and forth, I just knew. I made an apt. with the surgeon I wanted...asked a ton of questions...then went straight to his scheduling person for a date. It's tough I know....hang in there.
Posted 8/23/2013 12:57 PM (GMT 0)
I agree with Marianne. When I came to the decision to have surgery, there was no more worry. It was all positive thoughts and looking forward to a life without disease and restrictions. Start Imuran or 6MP, it might buy you more time and at least turn your quality of life around.

Sue
Posted 8/23/2013 1:00 PM (GMT 0)
ByeByeUC,
I read your story and i am on similar line. I am 38 male Dx with Pancolitis. Cant decide if I should keep taking Remicade which is helping me only 50% OR should consider surgery. Tough call.

Help me decide

Male 38
Pancolitis
R K
Posted 8/23/2013 1:10 PM (GMT 0)
Are you against immunosuppressants (6mp, imuran, aza) and biologics (remicade, humira)? As there are certainly other medications out there to try before you seriously consider going under the knife. A lot of people try all of the possible uc medications before considering surgery with any sort of seriousness.
Posted 8/23/2013 1:21 PM (GMT 0)
I happened to toss and turn in my sleep some nights, about my surgery decision, right to the end. I cancelled my surgery a few weeks before the date, then 5 days later rescheduled it and managed to snag the same date again, then tossed and turned again, and almost cancelled the day before the surgery.

Now, 3.7 months post surgery I am sooooo glad that I didn't cancel. Life is for me now completely normal with my end ileostomy - but the reason I am posting is simply to point out that not everyone who will get life-improving uC surgery will 100% be at ease with the decision going into it. It can be especially nutty that one sometimes gets a powerful mini-remission in the weeks just prior to scheduled surgery- that happened to me.

That said, you should feel reasonably at ease with the decision and absolutely you should seek all available info. and have a good surgery consult or two where you can ask lots of questions. I'd ask about patients who weren't happy wi their surgeries and why, and ask about what ifs, different surgical options, etc.. Everyone's risk tolerance is different and each surgery options has its different potential pros and cons.

Even if you choose to put surgery off indefinitely, or not ever get surgery, having an ongoing relationship with a top CR surgeon or two can give you piece of mind that you can pull the rip cord whenever you want to, and that often helps lower ones stress and anxiety level enough to help enter a solid remission (it is very stressful having to do surgery consults, wait for a date etc etc if you are in a big flare). Best wishes.
Posted 8/23/2013 1:21 PM (GMT 0)
Well, I wouldn't have gone straight to surgery from being only on sulfasalazine, but I have been where you were (thinking about it constantly), and that was when I scheduled my surgical consults. You should definitely do that. A consult is NOT a commitment to go forward with surgery. It is an opportunity for you to interview a potential surgeon and pick their brain about surgical options and their opinion of your case. In fact, when I interviewed surgeons, one of them told me that although I *could* do surgery, he thought I was jumping the gun and didn't need it yet. It's true that most surgeons are "into" surgery, but you might be surprised at the unbiased honest opinions you get.

For what it's worth, I had my takedown surgery (last step) 23 days ago, and last night I woke up only once. With the size of my bladder I should be getting up in the middle of the night to pee anyway if I'm hydrated, so I have to say I'm pretty satisfied...
Posted 8/23/2013 1:27 PM (GMT 0)

Raj_k said...
ByeByeUC,
I read your story and i am on similar line. I am 38 male Dx with Pancolitis. Cant decide if I should keep taking Remicade which is helping me only 50% OR should consider surgery. Tough call.

Help me decide

Male 38
Pancolitis
R K

I really can't help you decide but what I can tell you having this surgery was a life saver for me. I didn't even get 50% relief from the Remicade...it didn't work at all for me and that was my last drug to try. Yes, it is a tough call and I hate for anyone to have to agonize over it. I did for a while until I just knew it was time. At the very least go for a surgery consult and get all the facts and info. All the best to you.
Posted 8/23/2013 1:43 PM (GMT 0)
I,ve done imuran remicade other Asa pred off an on for three years and saw a surgeon too, am indecisive by nature which doesn,t help. Gotta bring my daughter to practice with my depends on. Write more later.
Posted 8/23/2013 3:00 PM (GMT 0)
I've thought about it too. It would be nice to not have UC lingering around me all day and night. Everything about UC just sucks. Being tired all the time, going all the time.. etc. But I will keep fighting it till' the day I die. I keep thinking.. what if I get the surgery then they come out with something new in a year that might have cured me? Besides.. I'm a 32 yr old male. I can't imagine hanging out with a pretty girl, then having to explain why there is a bag of crap hanging out lol. Would be the end of all of that if ya' know what I mean.
Posted 8/23/2013 3:04 PM (GMT 0)
Personally, if I were feeling like you were I would consider surgery heavily. It seems that you are really putting a lot of thought into it, since you are waking up at night about it. And also your cancer worry.
I think you should definitely go have a consult. Maybe meet personally with some post surgery people.
It may put your mind at ease about surgery and keep you from obsessing about it.
Posted 8/23/2013 10:42 PM (GMT 0)
ByeByeUC,

Thank you. Today was my 5th Infusion and 1st dose of Methotrexate. I will see if that brings me into remission, otherwise I do not want to drag it long. I can live with approx 6 BM on J pouch ( hopefully ) rather then having 6 BM with remicade.

Keep posting and everyone please share your insight and experience.

R K
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