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Another flare!?!? (ON REMICADE!?)

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Ulcerative Colitis
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Posted 7/13/2010 11:53 AM (GMT 0)
Well everyone... I know i'm going back into another flare.. I think we, with UC, can always tell when its coming. all the symptoms back, diarrhea, blood, up all night, can barely move, temp at a steady 101-101.7, overall feeling like I did in my last 2 flares.

AND I JUST GOT MY REMICADE INFUSION A WEEK AND A HALF AGO!? I guess I've built antibodies against this amazing medicine.. I've only been on it for about 7 months... and already I believe it has stopped working. I've been feeling amazing this whole year up until now.. I came out of my worst flare around November of last year, and have been feeling like I never even had the disease up until a week ago, I felt it coming on but it wasn't too bad up until yesterday... so I was out on the motocross track TWO DAYS AGO! and now I'm feeling like this. I've gone from racing motocross just TWO DAYS AGO... to being stuck on the couch and running back and forth to the bathroom in immense pain...

Thinking about going under the knife.... I can't live like this I'm only 20 years old, and I've had 2 flares in the past year and a half.. and this would be my third if it progresses
Posted 7/13/2010 12:18 PM (GMT 0)
Aww I'm sorry to hear this! :( I know the frustration at the unpredicability of this disease only too well. Maybe it is time to start looking into surgery.
Posted 7/13/2010 12:29 PM (GMT 0)
Thanks Sherry.... yeah it's just amazing that I was out on the MX track TWO DAYS AGO racing jumping 100 foot jumps I rode for 3 hours! and have been every weekend...

and now today I'm useless... I'm getting the dizzy feeling when I stand up, getting so worn out so quickly just walking up the steps and this is just in 2 days. thinking I'm back anemic.. as in my last flare I was two units low in just a couple weeks.. so I think i could be slightly anemic already...

It's just downright depressing really.. I DON'T want to be back in the hospital bed for a week. I don't want nurses coming in and taking my blood every couple hours all through the night. I just don't want to go through these flares anymore.. I'm 20 years old!

If I go back into a severe flare, I am without hesitation having surgery.. my dad had it 10 years ago and he has not had a problem since! he has the ostomy bag still but I would go with the j pouch surgery as well... does anyone have any experience with j pouch?? after the j pouch surgery can you do EVERYTHING again? (such as with me, racing motocross, wakeboarding, everything I love to do?) or would this keep me from doing those things.. I know the ostomy bag would keep me from doing those extreme things but will j pouch allow me to
Posted 7/13/2010 1:30 PM (GMT 0)
I know how you feel, I'm only 19 years old and I've been through so many flare ups already. It really does suck, it holds me back from doing many things. I just got into remission after being in a flare for more than a year, but now I think that's starting to go away already. As for the J-pouch surgery, I know some guy who goes to my gym, he's a massive body builder. He had the j-pouch surgery, then 3-4 months after having it, he went back to lifting heavy weights. So I think you could do all the same things that you used to. You should still consult other members on here that had it before and your doctor.
Posted 7/13/2010 6:39 PM (GMT 0)
Totally sucks that it's hit you so hard. Now, going to mention this again....have you tried any rectal meds at all?

If I were in your situation at your age and activity level needing high energy, surgery would be a high consideration.

q
Posted 7/13/2010 8:02 PM (GMT 0)
yup was on rowasa throughout my last flare and it seemed to have zero effect on me..
Posted 7/13/2010 8:47 PM (GMT 0)
sucks....what about the steroid enemas?

q
Posted 7/14/2010 12:02 AM (GMT 0)
I don't know if this will make you feel better or worse, but when I was on Remicade I already had a few infusions and then got really sick. Had a high fever I couldn't shake and my flare just kept getting worse. I ended up in the hospital for a few days and restarted steroids and kept going with my Remicade. After the next infusion after that flare I was great for four years. Of course everyone is different, but I was nervous about keeping going, but I hadn't had any other reaction that time just the fever and flare.
Posted 7/14/2010 12:22 PM (GMT 0)
Cupcakes really? yeah because I feel like i'm right back in the middle of one of my flares and I'm scared to death. I can't keep living like this and idk what i'm going to do.. talking to my GI today about what the best route is... back on 30 mg of preds right now and just trying to get through this
Posted 7/14/2010 2:05 PM (GMT 0)
there is no reason you cant do those things with an ostomy! there is a pro surfer who has one, you wouldnt beilive the people who have them and what they can do.
Since your dad has one you know it hasnt affected his daily life.
Anyway, my theory, having had surgery 3 years ago, i wish i had done it soooo much sooner and not wasted 8years of my life, my 20's actualy.
Good luck!
Posted 7/14/2010 2:42 PM (GMT 0)
Let alone the side effects of the medications....
Posted 7/14/2010 4:00 PM (GMT 0)
Hey yeah my dad has an ostomy bag and he always tells me he wish he had the surgery 10 years before he broke down and did it.... and I don't want to suffer as long as he did when there is a known "cure" (surgery) out there that I could have done right now...

I'm tired of doing so well and getting my weight back up.. getting my stamina going, working out, racing motocross, working at my great job, and then BOOM my life's just steamrolled by ANOTHER darn flare. To me, it's just that time to have surgery. Remicade was my last resort before the surgery and now that it's failed... onto the surgery.

now with the ostomy bag, I know it's not REAL restricting in your day to day life.. but something like me racing motocross, it could for sure be a problem if I take a crash landing from a 100 foot jump or lay my bike down and land on my stomach... bag explosion? A REAL MESS added to the pain of the crash! and we all face it in my sport.. we're going to crash, so that is what worries me about the bag, and I wakeboard and am a big boater so that would be another very sensitive thing... in my case the j pouch "bring down" surgery would for sure need to be done.
Posted 7/14/2010 5:44 PM (GMT 0)
i dont know what wakeboarding is, but if you pad yourself well and empty before you ride it shouldnt be a problem
Posted 7/14/2010 7:19 PM (GMT 0)
Sorry you're going through this. it must be very stresful. You could always consider a j-pouch. I would definitely go that route if I had surgery if it were at all possible. There are options, maybe the flare will pass or maybe a course of prednisone?

Goodluck to you.

Posted 7/14/2010 7:42 PM (GMT 0)
With a jpouch you can continue all your activities. I don't engage in motocross or wakeboarding but I could if I wanted to. I had surgery 9 years ago; best decision. I'm a long distance (100-200 mile) hiker and I was able to start hiking again right after surgery. I'm also a gym rat and an avid international traveler. The jpouch gives me no problems.

Sue
Posted 7/14/2010 7:55 PM (GMT 0)
notsosickly- Thanks and yeah it's incredibly stressful... just weighed myself and i've lost 25 pounds in a few days. umm I'm on 40 mg of preds right now.. just started that dose today...

Suebear- thats very reassuring, I'm deffinately ready to go ahead and go under the knife if this flare doesn't pass over.. I actually have an appointment with the UNC surgeon.. not sure when yet but my GI is contacting them and getting it all sorted out
Posted 7/15/2010 12:11 AM (GMT 0)
I may be not the typical case and that only happened once. I was worried at the time I wasn't sure I agreed with my doc to do the Remicade one more time before giving up and I did land in the hospital first. But after that I was symptom free on Remicade. I was glad the doc pushed me to not stop it yet. For some reason, for myself I am totally against surgery, I just can't grasp that. I am not sure why but that is like my all time last resort.

On the flip side my cousin hated Remicade and even though it was working for him he saw Remicade as a death sentence and could not deal with going into the hospital every 8 weeks for insfusions. He stopped the Remicade and had surgery, he is doing great. It has been almost 10 years since his surgery and he has had no problems and is glad he did it.

Yes, me, my dad, and cousin all have Crohn's or UC. And no surprise we are all completely different on our symptoms and what has helped!
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