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meds not working, feel horrible

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Ulcerative Colitis
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Posted 9/27/2009 10:35 PM (GMT 0)
I started tapering off 5mg a day for 2 days, at a time under the advice of my mom (30 year long nurse practitioner) and I already feel much better. the meds aren't working. so I am going to demand different ones. I don't want my colon removed. I can't live live with an external pouch. it just doesn't sit well with me, I was a world class rock climber, chef, and runner. I was doing p90x and working on my personal trainer cert when all this happened. there are alot of meds I haven't tried yet. so I'm gonna give them a go, and tell the doc I never ever want prednisone again. it made me feel sick, just plain sick. like the flu sick. ugh. I have been looking into an intestinal transplant through Georgetown University. if you guys want to check out the website. its pretty amazing stuff, especially for people with crohns. I won't let this win. I will have my life back and start running in the mountains again. and soon. thanks so much for the support. its been tough, I cry at times about how my life just crumbled. I hate not being in control of my body, I've always treated it so well, which is why its so frustrating to me. I'll repost on my progress soon.
Posted 9/27/2009 10:47 PM (GMT 0)

Your determination will get you where you want to be!  I so agree with you on having my colon removed - try everything first -EVERYTHING!  I guess I would only consider it as a life saving measure of course.

I really know what you mean about treating your body right and still getting this. I never treated my body right and I have UC at age 69.  If we only knew the CAUSE of UD I think it would help so much - of course in the treatment - but also in understanding why we in particular have it.

Hang in there - be firm with your doctor and keep treating your body right!!

ElaineNY

Posted 9/28/2009 10:20 AM (GMT 0)
Chef Patrick -- you will regain your strength again. I wrote previously about being positive as this has helped me over the thirty years. I do believe that this attitude put me into remission for 14 years. I never stopped striving for something. This is the first episode in my life when I haven't been studying or striving for something. Having said that I will be 60 next year and have planned a trip to Switzerland ( on my own -- first time abroad !! ) As my childhood dream was to walk in the Alps !! I also want to try assisted climbing in the Lake District and go up in a helicopter -- all firsts !! Sorry I must go now as I am going ballroom dancing this afternoon. Happy Healing -- Kath
Posted 9/28/2009 5:01 PM (GMT 0)
I'd ask a LOT of questions about an intestinal transplant...As UC is believed to be an autoimmune disorder, there's nothing to suggest that your immune system wouldn't attack your new colon.

If you have a colectomy, you don't have to have an external pouch. There's a surgery called the j-pouch where they create a small pouch out of the end of your small intestine. You have to have a temporary ostomy and external pouch while the j-pouch heals, but then you pretty much poop like a normal person. I hope that suebear comes back and posts. She's had a j-pouch for 8 years (I think) and has done a lot of multi-day backpacking trips with no problems! Please learn about j-pouches before you consider an intestinal transplant!
Posted 10/3/2009 4:37 AM (GMT 0)
I just had a colonoscopy on thursday, they cut out two polyps. won't know till the 15th if they are bad or not. but had alot of bleeding the next day, they wanted me to come into the ER. but I can't miss any more work. on rowasa right now. I want to take the canasa. but its too expensive. still trying to get free meds. the good news is that the UC hasn't spread. its still just in my sigmoid colon. so I'm gonna talk to the doc about having the bad portion cut out and the rest of my colon stretched down. (like they do with a j pouch) . seems simple to me. I just want my life back. so tired of medicine.
Posted 10/3/2009 2:03 PM (GMT 0)
Wondering about your thoughts about having the bad portion cut out and the rest of the colon stretched down. Did you find that it is a treatment option? I am interested because I was always told that the options were an ileostomy or J pouch because cutting out a portion does not help because it will come back in the other portion. I am at the same point you are and am looking for more options then a ileostomy or j pouch.
So I definitely would like to know if this option is available.
Posted 10/3/2009 3:01 PM (GMT 0)
well, I haven't discussed the idea with my doc. I plan on it on thursday on my follow up. it hasn't spread in three years from the first diagnosis. so I don't know if it will spread again or not. I would like to think not. makes sense if they can do a j pouch then why couldn't they just cut out the bad portion. since its only in my sigmoid colon. anyhow seems like a simple plumbing procedure when I talk about it, but I'll follow up with what the doc says and let ya know. I came across a man about my age that had a j pouch done and he is living life to its fullest. It really brought a tear to my eye, partially from frustration and a bit of hope and excitement that I too may get that relief. its so frustrating, I feel as if its destroying my body and my mind slowly. http://www.jpouch.net/2008/05/11/testing/ here is the link for the gentleman I mentioned earlier. good luck with you all in your battle.
Posted 10/3/2009 3:37 PM (GMT 0)

I have always thought that some could have that done - but never heard about it.  Maybe depends on type of UC you have.  I am sure some here know all about the options.  I am seeing my specialist in Albany next week and will put that question on my list.  My UC is mostly proctitis so sure no surgery outside complete removal would work - but seems some of you could benefit!

ElaineNY

Posted 10/3/2009 3:46 PM (GMT 0)
I hope so, I plan on discussing it with my doc, and other doctors. especially those Georgetown university hospital guys. they seem to have some headway on the subject. I'll let you know for sure, let me know what your specialist in albany says. thanks again!
Posted 10/3/2009 6:00 PM (GMT 0)
ChefPatrick - I found this while doing research.  I have no idea of the validity of this website but certainly worth reading and considering with your doctor - surgeon!  Looks feasible for someone like you with limited to sigmoid for this long.  If I were young and had UC (diagnosed when 67) I would consider such surgery - at least by getting opinions from a couple reputable surgeons!

Georgetown is an excellent place to at least start. 

http://www.healism.com/procedures/digestion/sigmoid-colectomy/

ElaineNY

Posted 10/3/2009 6:44 PM (GMT 0)
OH WOW! that is exactly what I was thinking can be done!!!!!! I'm gonna print this out and take it with me on my appointment. thank you so much!
Posted 10/4/2009 3:49 AM (GMT 0)
I think this surgery can only be done in cases of cancer, not sure if its o.k. to do with UC. but I'll find out for sure on thursday. thanks again.
Posted 10/4/2009 12:55 PM (GMT 0)
Yes, let us know after you talk with your Doc because I too have only heard this done with cases of cancer. With UC they feel the part of the colon left would start being attacked so I definitely will be waiting to see what your Doc says about it.
Posted 10/5/2009 8:30 PM (GMT 0)
does anyone get sweats for no reason? I'm still on 40mg prednisone, but tapering off. was on 80mg. so I think thats what it is. also have horrible acne on my shoulders and back. is that from the steroids? I'm feeling bad again today after being a bit more upbeat. still tired, however the rowasa might be working cuz I had no blood today and somewhat solid of stool. I started taking some probiotics three days ago, and am also eating lots of soft foods and bulgarian yogurt.
Posted 10/5/2009 8:33 PM (GMT 0)
Pred is notorious for causing sweating, especially night sweats. I had a problem with that for a while even after I had tapered off. Acne is another common side effect.

Sounds like you're making progress...hang in there!
Posted 10/5/2009 8:49 PM (GMT 0)

Hang in there.  I had the night sweats long before diagnoses and too old for hot flashes.  That and nausea which is much better in both cases since tapering and off prednisone August 15.

ElaineNY

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