So, I have been battling chronic pouchitis for about 2 years now, on rotating antibiotics (levoquin & Rifaxin) and varying doses of entorcort for the past 18 months (taper this down, but then I flare, so up it back up to 9mg to get under control, try to taper down again,etc.). I flared in October, so in November went back up to 9mg Entorcort, kept rotating antibiotics, and added daily cortisone suppositories to my regimin, which did the trick. But even keeping the ABs and the high dose of Entocort, everytime I try to reduce down to every other day on the suppositiories, I get bad. My situation is complicated due to damaged sphincter muscles from my fistula surgery.
I am heading back to Mayo in a couple weeks for scope, lab, and consult, and the nurse mentioned 2 things-possibly a slower taper off from the cort steroids-go from 7/week to 6/week, etc. to see if I can get off them, or we may need to consider "escalating the medication" which I assume probably means Remicade (from what I've read).
I had UC back in the day where azulfadine and prednizone were my only options, so these biologics are new to me. If my options are as above, I am inclined to maybe request trying some different ABs and give a longer taper from the Cort steroids a chance first. I will ask at my appointment, but they have said staying on the cort steroids long term as maintenace therapy is not a good idea because of the risk of "thinning"-I am not sure what that means, and am curious if others have used cort steroids for long periods of time, at what dose and for how long? if any problems? etc.
I've tried to do some reading on Remicade and pouchitis, but there is not a lot out there. It seems that once I start it, if it is effective, I should not discontinue treatment, because if I ever need it again (and with 2 years of chronic refractory pouchitis, I assume I will) it may not work, AND even if I stay on it, it stops working for most people at some point (and of course, has risks of infection, lymphoma, etc.). When I had a colon, we threw everything at it to stave off surgery for the longest period of time, and I guess I am mostly in that same mindset here. Hoping beyond hope that if I can buy more time, that Remi or Humira, or something new, or worm therapy, or fecal transplant or SOMETHING will come along that is a better option, TO ME, than a perm ostomy. As much as I hate the idea, I know that someday if/when my quality of life sux badly enough, it is a decision, I may have to make, but I am not ready for it now.
(I also take lots of fiber, immodium, and codiene daily to thicken stool, and have a spinal cord stimulator to help with incontinence, but it doesn't help when the stool is too loose, which is what this pouchitis causes, even when on all those thickeners...)
So-any experiences with long term cort steroids and/or remicade as pouch treatment are requested, along with any questions I should be asking my Mayo Doc (Pending my insurance approval-don't you hate insurance nightmares?!?). Thanks!
I am heading back to Mayo in a couple weeks for scope, lab, and consult, and the nurse mentioned 2 things-possibly a slower taper off from the cort steroids-go from 7/week to 6/week, etc. to see if I can get off them, or we may need to consider "escalating the medication" which I assume probably means Remicade (from what I've read).
I had UC back in the day where azulfadine and prednizone were my only options, so these biologics are new to me. If my options are as above, I am inclined to maybe request trying some different ABs and give a longer taper from the Cort steroids a chance first. I will ask at my appointment, but they have said staying on the cort steroids long term as maintenace therapy is not a good idea because of the risk of "thinning"-I am not sure what that means, and am curious if others have used cort steroids for long periods of time, at what dose and for how long? if any problems? etc.
I've tried to do some reading on Remicade and pouchitis, but there is not a lot out there. It seems that once I start it, if it is effective, I should not discontinue treatment, because if I ever need it again (and with 2 years of chronic refractory pouchitis, I assume I will) it may not work, AND even if I stay on it, it stops working for most people at some point (and of course, has risks of infection, lymphoma, etc.). When I had a colon, we threw everything at it to stave off surgery for the longest period of time, and I guess I am mostly in that same mindset here. Hoping beyond hope that if I can buy more time, that Remi or Humira, or something new, or worm therapy, or fecal transplant or SOMETHING will come along that is a better option, TO ME, than a perm ostomy. As much as I hate the idea, I know that someday if/when my quality of life sux badly enough, it is a decision, I may have to make, but I am not ready for it now.
(I also take lots of fiber, immodium, and codiene daily to thicken stool, and have a spinal cord stimulator to help with incontinence, but it doesn't help when the stool is too loose, which is what this pouchitis causes, even when on all those thickeners...)
So-any experiences with long term cort steroids and/or remicade as pouch treatment are requested, along with any questions I should be asking my Mayo Doc (Pending my insurance approval-don't you hate insurance nightmares?!?). Thanks!
