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New poster - Contemplating surgery

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Ulcerative Colitis
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Posted 6/10/2013 2:27 PM (GMT 0)
I have been lurking around for a little bit but first time posting.  I am 34 years old and was diagnosed with UC last July and at the time it was limited just to the lower portion of the colon and rectum.  A dose of prednisone along with starting Lialda and I was "ok" until this Feb.  I say ok because I don't believe I was in a true remission but it was managable, only 2-3 times a day and was not bleeding like I was during the flare up.  At the end of Feb it all flared back up to 20 times a day with a good amount of bleeding.  However this time the prednisone failed to give me any kind of relief.  They did another scope and the UC had spread throughout the colon which is another reason I think they symptons were just being masked and I was not in a true remission as I don't think it would spread that fast through just one flare up.  So as it was now moderate/severe and effecting the whole colon the doctor recommended that I start Remicade. I was hesitant to start the Remicade but I was desperate and really needed some relief so I did.  A few days after the fisrt infusion I did get just that and got back to that "ok" state and only 2-4 times per day and no bleeding.  about a week after the 3rd infusion I had to travel for work and while out there I could just feel another flare comming on.  I was able to make it through the week and the flight home by using Imodium.  But the following after returning home I did start to flare again.   Not quite as bad as the first 2 flares but still pretty bad with a good amount of blood. Post Edited (Wannabe) : 6/10/2013 8:54:08 AM (GMT-6)
Posted 6/10/2013 2:52 PM (GMT 0)
So the doctor now wants to double my dose of Remicade and put me back on Prednisone in the meantime. This really has me starting to question the doctor. Why the Pred when it did nothing just a couple months ago? I don't want to deal with that drug when I already know it didn't help. Also with the way it played out, to me it seems like the Remicade has failed and that a higher dose would just be putting more of the toxic medication in my body for no reason. It seemed it worked at first as it did relieve my symptoms but now I am flaring again.

How much would this increase dose increase the risk of side effects? The GI assistant seemed to really dodge this question. Also it doesn't seem like a higher dose is all that more effective in the studies but I could be wrong as I don't fully understand it. Another twist is that last week I developed a blood clot in my leg. The ER doctors seem to think that it is a result of the travel but I really believe that the Remicade played a part in this. So that makes me even more hesitant.

I have seen another GI who seemed to really pushed for surgery so I have a consult with a surgeon this week.  Though I think a year into this disease seems pretty quick to have to resort to surgery but the drugs just don’t seem to be working.  I am very scared about surgery because about 8 years ago my mom passed away after complications from a surgery.  While a different surgery it does make me very anxious at the thought.

Posted 6/10/2013 3:05 PM (GMT 0)
hey welcome W -

so sorry about your mom :-(

i'm not so good at commenting, i'm more into answering and i didn't see any real questions -

but ..... i think getting the doc thing figured out would be a priority -


good luck -
Posted 6/10/2013 3:42 PM (GMT 0)
My only words of wisdom I have for you is take a good long look at your quality of life right now. Make a list if you have to about what is good and bad right now. I was in your place not too long ago questioning surgery. I finally got so sick I didn't have a choice but to go for it. Best thing that could have happened. I am so happy I went thru with the surgery (I have a j pouch). No more UC or drugs. I'm still in awe everyday over that fact. I guess because I was so ill sometimes I still can't believe I'm well again. Anyway, ask a TON of questions at your consult and good luck.
Posted 6/10/2013 5:24 PM (GMT 0)
My advice would be stick with the remicade and give it time as it sounds like you haven't been on it for that long. I agree with you about the prednisone, I hate that stuff and all the side effects that come with it.
Posted 6/10/2013 7:45 PM (GMT 0)
Have you ever tried some rectal meds? Might help if you haven't.
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