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Heading in a new direction...advice/opinions?

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Ulcerative Colitis
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Posted 1/15/2014 2:59 AM (GMT 0)
Hello all! I have been through the ringer with my UC since January 2013. I have never had a flare last so long. It has been frustrating. I have lost 35 pounds, mostly since november. Atleast I had pregnancy weight on me so I could afford to lose some! :)

I have switched to a new GI.

She just did a colonoscopy to see what exactly we are dealing with. She is checking immunogobulin levels for some other disease (forget the name) and did biopsies to check for other infections.

I have been on 10mg/kg of remicade every 4 weeks for about 4-5 months and had been on a lower dosage before that (year of remicade total).

Asacol didn't seem to be very beneficial and the new GI suggested not even wasting money on it for the time being.

I do have Rowasa enemas, but had been having trouble retaining them (going to try them again bc bms have decreased)

I have not been able to tolerate imuran or 6mp due to extreme vomitting.

I am currently on 40 mg prednisone (2nd week) and plan to taper to 30 next week... so far i am seeing progress from the pred. I am only having 1-2 BMs/day, but still get nauseous after eating.

I am taking zofran some for the nausea. Nausea has improved greatly from what it was though.

GI is suggesting to consider Simponi or Methotrexate but wants to wait until biopsies and lab results come back. We discussed each and she told me to have them in mind and be thinking on it.

Does anyone have experience with either of these drugs? I haven't heard much about them.

Any insights or suggestions would be SO very appreciated. Thank you all!
Posted 1/15/2014 3:33 AM (GMT 0)
check out bananagirl's recent thread- she has had great success recently with simponi if I'm not mistaken.
Posted 1/15/2014 3:56 AM (GMT 0)
Thank you! Simponi sounds promising! From what I have read, Methotrexate doesn't even seem to be very statistically beneficial.
Posted 1/15/2014 4:08 AM (GMT 0)
All I can say is that this illness is very unpredictable and difficult to deal with. I think it's smart to wait for the biopsies, that way you can rule out any other causes of inflammation. Maybe an antibiotic would help if there is something going on like c. diff. Stool tests are never a bad idea. I have seen people have luck with Simponi and Humira. Some of our members are using LDN or diet. Others have done alternative things like fecal transplant or nicotine patches. I am sorry you're having so much trouble getting into remission. Have you tried any other 5asa? Maybe delzicol isn't the right one for you. I always have trouble retaining Rowasa, sometimes I use canasa instead, that or you have to just try as hard as you can to hold the Rowasa. I usually lay very still and breathe deep. The pain subsides after a few minutes. Of course that depends on inflammation. i've had situations where my inflammation was so bad i couldn't retain a suppository. have you tried cortisone enemas?
Posted 1/15/2014 4:18 AM (GMT 0)
We did do test for C diff already which was negative. I am pretty confident the result was accurate because I have done a few tests. I have not tried any other rectal meds. The rowasa used to help, but this go around I think inflammation was just too much to hold it in. I feel like I am at the point where I may be able to retain it again.

I get overwhelmed about trying to make dietary changes, but I have been slowly trying to figure out what seems to be helpful for me that way as well.

Thanks for the good ideas/tips. I really value anyone's input!
Posted 1/15/2014 6:27 PM (GMT 0)
I did that , new GI, scoped.

She wanted Imuran or surgery.

She ignored all my data showing improvement.

I went back to GP and have continued to improve on ASACOL HD, psyllium seed powder, wheat grass, Intestinew, RS diet ( navy beans and slender sticks drink powder ). I also take Quin Dai from China.

I see no reason to do anything else.
Posted 1/16/2014 12:50 PM (GMT 0)
The good thing about my new GI is that she seems to think surgery would be a bad idea for me at this time. ..like I have too much hope of remission to consider that an option right now. That was the problem I had with my last Gi...kept talking surgery.

I am concerned that maybe I should still be on asacol or a similar drug right now too. Thanks for the info!
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