Hi All,
I am struggling with trying to figure out what to do. Any advice would be very much appreciated.
Problem
This is the second time I have tried to get off of my prednisone since reading LYTG. Just like last time, I am around 10mg and starting to see some dark red blood on the stool. It is not alot, but it is getting worse. (BTW, I am so looking forward to someday not having to check the bowl for blood - argh!)
The last time the bleeding started (about 3 mos ago), I tried some things which didn't work right away and I panicked and up'd the pred. I know it wasn't the best thing for me to do. Jini provides many wonderful "tools" to help get out of that situation, but like I said, I panicked and am now paying the price.
The slight cramping that I get is in the transverse colon. Although it is probably obvious to everyone else, I think that my mucosa in that area must be damaged. Like I said, this is probably extremely obvious.
Out of mostly stupidity, I had not been taking many of the supplements that Jini has recommended in LYTG. I guess I was putting all my eggs in the probiotic basket.
History
12 years with moderate-severe UC, most of 12 years on pred, 6mp and Asacol. Starting taking probiotics in 8/06.
Currently taking
drugs:
-10mg Prednisone (down from 30)
-50mg 6mp (down from 125)
-800mg x3 Asacol (6 pills per day down from 12)
supplements:
-1 capsule Megadophilus 4x /day
-1 capsule Bifido factor 4x /day
-30 mg Coq10 1x day
-3-6 of those gummy bear vitamins per day
planned changes:
-increase coq10 to 3x day
-Change gummy vitamins to the Nature's way Prenatal
-get back on 2 scoops of Absorb Plus in Kefir 1/day (yum!)
-try Mucosaheal again (more below)
Questions:
1. At Darkangel's request (THANKS!), I tried taking Mucosaheal. I took it for 2 days at 1 per day and then (STUPID ME) jumped to 1 pill 4x day. Started seeing D. No blood I think, just lots of D. I went back down to 1 per day for a couple of days and the D got better but was still there. Can Mucosaheal cause D? Is this die off? Should I worry that I can't tolerate it?
2. I have spent most of 12 years on Prednsione and 6mp. I know that these meds impair my body's ability to heal itself. I would guess that this is part of the problem with trying to heal the damaged mucosa in the transverse colon. Right?
3. How much is my current dose of 50mg of 6mp hurting my body's ability to heal the colon? It has taken me a year to get the courage to decrease from 125mg to 50mg. Going all the way off of it scares me, but I will do it if it is the reason that my body cannot heal... (of course the paradox is so funny... paraphrased: Should I stop taking the medication I was given for the problem so that my body can heal ARGH) Of course I know the prednisone is impairing my body's ability to heal too... but getting off it is the main point!
4. Another thought I had was to try to increase the probiotics. Maybe I am just not at high enough level. So I upped the probiotics (BTW, before last flare I was at 1tsp 3xday of first two powders). So I upped the Megadophilus for a few days: D. Upped the Bifidio for a few days: D. Which really makes me frustrated because I have taken higher levels of these things before. ARGH! So here's my thoughts: I know that the Natren probiotics create beneficial acids. If that one spot in my colon is wounded/poorly healed, is it possible that the acid from the probiotics is just too hard for that one area?
5. I have cut my Asacol qty in half. Although I know that it is toxic and I need to finish getting off of it, I do wonder: Does it help protect the mucosal layer? Am i having this problem now because I have cut the Asacol? Does it make sense to go back up on the Asacol to get off of the Pred and 6mp, which I believe are much worse on my body?
I would appreciate any advice/ideas/experience that anyone has. Please skip the idea of the Wild Oregano as I am on 3 meds and don't feel that my liver is ready for it yet.
Thanks so much!
Ed










