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Ulcerative Colitis
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Posted 10/20/2010 2:06 AM (GMT 0)
Hey guys,
I'm new, I'm a 17 year old girl, and I was just wondering about the 2 possible surgeries if the medicines I am currently taking don't work. (I'm not considering that now, but just in case, I like to know).
Which surgery would be better if I don't want a permanent pouch outside forever, and just stich it up after the second surgery. It sounds hella scary!

Thanks guys!

Maggie :)
Posted 10/20/2010 2:10 AM (GMT 0)
Hi,
In order to help you more we need to know what meds are you on right now. Also, how long have you been diagnosed?
Posted 10/20/2010 2:17 AM (GMT 0)
Hey Rise Against, Jpouch.org is a great place to learn about the J pouch surgery. They also have a section there dedicated to the K pouch, but I don't know as much about that. Also try searching UCVlog on youtube. Hopefully the meds work and you never have to consider surgery, but it doesn't hurt to learn what your options are ahead of time.
Posted 10/20/2010 3:19 AM (GMT 0)
Hey!
Ive been diagnosed for about 3 years, and I am currently on Asacol and Imuran!
:)

Thanks Slight, I will def go check that out! I hope so too :)
Posted 10/20/2010 12:39 PM (GMT 0)
Has your doctor suggested any other medicines like Humira, or Remicade?
Posted 10/21/2010 3:01 AM (GMT 0)
Well I'm on the meds I mentioned earlier right now, but i believe if those dont work then I'll have to go onto remicade, but the side effects don't really seem worth it. what do you think? Have you tried it?
Posted 10/21/2010 3:11 AM (GMT 0)
You might take a look under the "ostomies" section of Healing Well to read about some personal choices/experiences. Maybe post your question there too as some have j-pouches, etc.
Posted 10/21/2010 4:05 AM (GMT 0)
oh thank you!! :D ill do that as well
Posted 10/21/2010 8:32 AM (GMT 0)
I would recommend at least trying remicade before seriously considering surgery. I built up a tolerance to it fairly quickly, but while it was working it was wonderful. I never had any side effects from it.

Obviously you will need to take into account your personal financial situation and appetite for risk with this drug; I thought it was well worth the risk to try to save my colon.

My 2 cents anyway.
Posted 10/21/2010 8:08 PM (GMT 0)

Rise Against said...
Well I'm on the meds I mentioned earlier right now, but i believe if those dont work then I'll have to go onto remicade, but the side effects don't really seem worth it. what do you think? Have you tried it?

I tried Remicade but am allergic to it, so I went on Humira right after and have been doing great since. I've been on it for 3 1/2 years and still going strong. :) Try the last couple of options before you do decide on surgery, maybe your body will surprise you. ;)
Posted 10/22/2010 1:48 AM (GMT 0)
Thank you so much for giving me hope! The surgery just sounds so scary and such a big deal! How different is Humira from Remicade?
I mean the whole side effects of cancer...etc sound extremely scary!!
Posted 10/22/2010 2:41 AM (GMT 0)
Can I add my two cents? I was diagnosed at 20, the first thing I said when I came out of the colonoscopy was "Will I lose my colon" and my Dr. said "probably"....in my opinion Dr's have NO BUSINESS telling 17-20 year old women that they will have surgery to lose their colons. It should be a LAST RESORT, as the most recent research says women who have had the surgery reduce their fertility by 85%.

this disease CHANGES and evolves in every person, its not static - each year can look different for you.

He told me I would "probably" lose my colon. I then went on to have 4 years of remission without ONE PILL and now am mildly flaring, totally manageable, although not ideal.

Surgery should be a last resort for someone SO YOUNG, especially if you want to have kids some day. Not trying to tell you what to do, I just know if I would have had surgery at 20, 21, 22, 23, etc. I would have been reallllllllllly upset, knowing how well I did in the following years!!!
Posted 10/22/2010 4:30 PM (GMT 0)
I would ask your doctor about the whole cancer side effects, I put that into consideration, but all I wanted was to get better. I think there is a small chance of getting cancer, but I really don't know. I know that Remicade is made and Humira are similar but have 1 thing that's difference... something to deal with mice and human something, I'm sure someone will come and correct me on this, but for me Remicade didn't help me one bit, but Humira got me back on track. :)
Posted 10/23/2010 7:11 PM (GMT 0)
oh ok, because those side effects do seem a little scary and in the end could possibly be regretful, but I guess to try it is a good idea. Do you ever have joint paints starting as like a sign a flare may be starting up?
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