tkctwbd, do you know how much of your colon is involved?
There are a number of things to consider before deciding on surgery:
- Have you ever tried rectal meds? Mesalamine or cortisone enemas can help with the proctitis. Oral meds don't always make it all the way to the rectum.
- Have you tried any other "first-line" drugs? Balsalazide (Colazal) has worked for quite a few of us who didn't respond well to Asacol.
- Probiotics are a great idea, I can't imagine why your GI would tell you not to take them. Most UC-ers do take a probiotic daily, and especially when taking any antibiotics.
- Once your fever is conquered, you might look into Remicade or Humira. Remicade has been around long enough that you can find a lot of discussion of it on this forum if you doa search.
I have to tell you, the thought of someone with UC taking 8 Imodium a day makes me shudder. Usually, we're told to avoid Imodium because it slows the motility of the bowel and can lead to toxic megacolon, which required emergency colectomy and can be fatal. Sometimes our docs will okay 1 - 3 a day, but 8 is a lot.
Finally, be wary of people promising "cures." At this time, the only cure known is surgery, although most of us never have to go to that extreme.
Welcome to the forum. I'm sorry you're having such a bad flare, and hope you'll find support here and perhaps some information to help you.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal, Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Posted 2/3/2008 10:42 AM (GMT -7)
Thanks everyone for input. I really appreciate your support and suggestions. It is lonely going through this alone. No one I know has this disease as I live is small town isolated in mtns. All IBD docs are two hrs away from me. There is one GI doc where I live but he dx me IBS even though the pathology report from scope indicated otherwise!! I will never go to him again. So I have to travel.
I stopped Imodium last night, and this morning (midnight to noon) I have had six stools - three with LARGE amt of floating pile (like grits). Usually I have ~six stools in same time period but the stool is pile that goes to bottom and I never can tell the amt because the toilet water is cloudy (pile dissolves in water). So the change is that my stools are now floating and I seem to have a larger amt of stool. Interesting! I did have some pain with evacuating which I did not have on the Imodium.
Judilyn, re: megacolon. While hospitalized in Oct, the team of GI docs did two scopes and x-ray of colon. Not having megacolon at the time might be why my doc felt comfortable putting me on the Imodium. He said to start with 4/day but no more than 8. What do you think?
Re Metamucil. I researched this several months ago via Internet. Found out that drugs and supplements should not be taken with Metamucil. The Metamucil reduces the effects of the meds and supplementation. Is this true?? I plan to start Metamucil today in another hour on empty stomach. I hope I see results immediately. Wouldn't that be great?
When first dx, I had colitis in the procto area ie proctitis. The Asacol worked well. Then after serving on jury which allowed my system to run down, I got this current flare and GI doc said the colitis covered three fourths of my colon. Early in my disease, I took proctofoam but I have never tried any other rectal meds. I have seen these treatments mentioned and I wonder if they would be appropriate for me. I have rectal pressure and I wonder if rectal medicines would help with that. I agree that it is worth a try, but I have never had an MD to suggest these treatments and I thought that odd. Perhaps they would not work for me because my colon is so inflamed.
The only PO meds I have taken are Asacol, prednisone, and thirty days worth of Imuran (and I wonder if I had c. diff when I was given Imuran). Also Imodium for past thirty days. Oh, I have tried several herbs and supplements.
No, I have not tried any "first-line" drugs? Balsalazide (Colazal). It seems that it takes about three months to try a treatment, then two months to recover, then another two months to decide on another treatment. It just takes patience to find out which med is best. I know that Pred is NOT for me. Imuran seemed to poison me. And now I am having trouble getting off Pred so the GI wants to see me in three wks. Don't know what he will suggest but I am so thankful that the team of GIs agree with me: get off the prednisone. This past yr has been a waste!! I'm back where I started after serving jury.
Re Probiotics. Yes! I have heard about and researched VSL#3. I know that there are clinical trials ongoing for UC sufferers to try VSL#3. My doc is not against probiotics, but he says not yet. I have a yogurt maker and can make my own VSL#3 when time comes. I am just waiting.
All these meds 6mp, colazal, etc, etc, etc are so confusing to me. I google each one as I research but never can keep them all straight. But I know that some of these drugs are quite powerful in that they can cause cancer, and they can damage pancreas and liver. What if they don't work after damaging my organs. I have a lot of thinking and praying to do about this. As my cousin said a while back, once the colon is out, I can't put it back. So I am taking one step at a time. Right now, I have decided to stop imodium and try Metamucil. Hopefully I will have some good news for GI when I see him this month.
Today I feel really good because I increased the Pred this morning by one mg!!!! Yesterday was terrible, terrible because I am trying to reduce to 2.5 mg. and my body does not like it. So when I have work to do ie go to town, I take an extra mg to get through that day. I have not told my GI this, but the Internet says that is one way to withdraw. Many doctors do not like for you to research over Internet. But I want to know about these things.
I will let you know how the Metamucil goes, and please correct or give your impressions on my thinking. I have no one else to ask. And I do think for myself because these are my decisions to make.
Thank you all again!
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