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Seriously considering skipping the “big guns” and going straight to surgery. Am I crazy?

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Ulcerative Colitis
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Posted 4/25/2013 4:12 PM (GMT 0)
Hands down, if immune suppressants and biologics were effective and without side effects, I'd use them to avoid surgery. In my case, Imuran was grossly intolerable (severe musculo/skeletal pain) even at a lower than theraoeutic dose, while biologics were not very effective even at 2x normal dose, and induced severe aide effects (joint pain, etc) in both cases. But if I had not tried those drugs yet, I would try them without any reservations rather than risk surgery. As far as surgery and pooping 6-10x a day (well, some manage 4-6 toos) Well, depends on how you look at it. If you consider it just doing a two-fer whenever you pee, it really doesnt involve going to the bathroom any more than before surgery. And emptying a pouch or bag is generally much quicker and cleaner than a typical UC poop. However, as a male, using a stall all the time will be a bit obnoxious, since mens rooms tend to often have only one or two stalls, which are inevitably occupied by newspaper readers and cellphone talkers in busy places like airports.
Posted 4/26/2013 7:21 AM (GMT 0)
I struggled till after Xmas, pred was making me fat and ill and I was waking up every night soaking wet with night sweats. I'm done with pred completely. Don't be so quick to dismiss imuran. I was at my lowest and my doctor started me on 100mg a day as a precourse to remicade. Within a week imuran had put me into remission and so far with the help of four mezavant xl and and a lansoprazol a day I'm completely normal. Maybe it won't last forever but for now I'm well which I feel lucky to be because I was so poorly.
Posted 4/26/2013 12:40 PM (GMT 0)
Glad imuran is helping you- but no way can Imuran have therapeutic effect in just a week. Months is more typical, so it must have been something else or a spontaneous improvement.
Posted 4/26/2013 1:28 PM (GMT 0)
short answer -yes you are crazy!
Posted 4/26/2013 1:35 PM (GMT 0)
I'm on Humira with very few side effects. I'd try that first before surgery .
Posted 4/26/2013 4:52 PM (GMT 0)

Probiotic said...
Hands down, if immune suppressants and biologics were effective and without side effects, I'd use them to avoid surgery. However, as a male, using a stall all the time will be a bit obnoxious, since mens rooms tend to often have only one or two stalls, which are inevitably occupied by newspaper readers and cellphone talkers in busy places like airports.

LOL- No kidding, seems America is constipated. I am in and out get it done and get out of there. Noidea what other people are doing in there before I arrive and after I exit.
Posted 4/27/2013 12:51 AM (GMT 0)
I get a whole new outlook on stalls. It really ticks me off when the urinals are filled so guys head to the stalls to pee. Even worse than that is when guys prefer peeing in the stall instead of a urinal and you're crapping your pants because of that. I hate going to busy places like McDonalds beacause they only have one stall and sometimes a father is in there with several kids and you know that that isn't going to go quick. I also hate it when they put baby changers in the stalls so someone is in there doing nothing himself but changing a baby when you are dancing the chimmee chonga.
Posted 5/10/2013 9:33 PM (GMT 0)
Well... it's official. Last night out of the blue I started hemorrhaging in the toilet more so than normal. We're talking massive amounts of blood - it looked like a murder occurred in the bathroom. I even called the gastro on call at the practice I go to in order to see what he thought about a trip to the ER. We decided to wait it out until today and I am starting Remicade, most likely next week once I get the requisite TB tests, hepatitis tests, etc. My doc apparently takes most of her patients off of the drug after a year (although many refuse if it's working so well for them) but that strategy that works well for me as one of my primary fears is the long term effects. That and the long term efficacy of Remi frankly isn't that good, particularly for colitis patients.

I'll likely be a nervous wreck waiting for the other shoe to drop during and a couple of days after my first infusion. Using this stuff just goes against my gut instinct. But I guess it's necessary to keep said guts. I am sure I will be screening this forum all weekend to get anecdotal information about the communities first experiences on infusion day.
Posted 5/10/2013 9:46 PM (GMT 0)
sometimes you drop the hammer and sometimes the hammer drops you -

good luck - hope it works quickly and well !
Posted 5/10/2013 9:51 PM (GMT 0)
The remicade infusions pretty easy....just boring. The first infusion they will watch you VERY closely to make sure you don't have any allergic reaction. They will have the drip real slow. They will give you Tylenol and benedryl at the start. Some people notice an improvement immediately while others it takes 3 or 4 infusions. It never worked for me but I'm glad because surgery has been a blessing. This is only my two cents of course but In most cases you are just putting off the inevitable (surgery) especially the way you are describing hemorrhaging. If I could go back on time I would skip the remi and go right to surgery. I wasted so much precious time I can never get back. Good luck.
Posted 5/10/2013 10:06 PM (GMT 0)
Seconding that the first infusion is really no big deal. The benadryl really knocked me out so I had a nice nap. I did end up having the post-infusion headaches that others report, but only after subsequent infusions (my dose was doubled).

Good luck, I hope it gives you relief!
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