Struggling to quell flare, only pred works right now

Well I am definitely in a prednisone dependent spell again, after a good 10 month long remission that was maintained exclusively (though not neccesarily cause-effect) while on LDN and various supplements. Below 20 mg pred I reflare now. I previously failed remi and humira and am allergic to all mesalamines. Tried stopping LDN for a week and restarting- I did get vivid dreams, but no relief On the IBD. Granted, LDN 's effect (if any) is probably nil until I can get at or below 10 mg pred.

Seriously considering the surgery road again, but extremely fearful i really have Crohn's, based on the way my pain never starts/ends in the rectum but rather feels like ascending or transverse colon. Officially UC pancolitis though.

Oh, tried slippery elm yesterday out of desperation, and got a much worse pancolitic pain from just one heaping tbsp. mixed in hot water. Thinking about retrying enteric coated phosphatydil choline rPC again - it gave me pain before when i briefly tried it but i really want to find the missing link to remission.

what about methotrexate? Or total parenteral nutrition?

seems like you're painting yourself into a pretty nice little corner. If you are focused on natural approaches have you given serious thought to dietary restrictions a la SCD?

Kazbern- have been on a restricted lower carb, paleo-like version of the SCD for over ten years. Would have lost my colon years ago had I not been- I basically would be in a constant severe flare if I didnt eat paleo (have tried going off and that's what happens)- but obviously it is not enough in my case; not that, not lots of probiotics, not worm therapy, not fecal therapy using my wife's poop, and not retarded release phosphatydicholine. Such is the frustration when one can not use any mesalamine and fails biologics. But yeah am sort of in a pickle lately what with only pred having any effect.

Just like to say that Probiotic and myself were some of the first people on the SCD diet and list many years ago,Elaine was still alive.
Probiotic has tried more things than me, I have even tried Rife,we both still have colitis,or something intractable. I have eaten lots of charcoal/clay and yes even dirt,mega doses of all kinds of supplements.
Pro: I have lost track, have you tried triple antibiotic thearpy.
Old Mike

Post Edited (Old Mike) : 5/16/2012 3:33:44 PM (GMT-6)

Marianne- many thanks- re tests- biopsies lean to uC but somewhat indeterminate; colitis is total (pancolitis) but stronger in some areas than others at times in scopes; prometheus test was 95% likely UC (indeed predicts steroid refractory) but GI's consider prometheus unreliable. GI's on balance say it is almost certainly UC but admit its not as certain as textbook case. I plan on a pillcam soon.

     The only time I had the Prometheus Test was after the GI doctor placed me on 6MP.  I thought it was to determine whether the 6MP would have any effect on my condition and at what dosage.  I had no idea it was to see if I had UC or Crohn's.  It cost me 200 bucks out of pocket for the test, and, in my opinion, the 6MP  did absolutely nothing.  I'm also glad that my medical insurance covered my Remicade infusions (I only had to pay a $5 copay) and my Humira injections.  At 5 grand per pop, I would most likely be in the poor house by now with the end result being surgery anyway .

probiotic, have you ever tried entocourt?

Probiotic,
I know you have tried a lot of different things. I am sorry that nothing really worked.
Have you tried Pascalite clay? Clays are different. Even if you tried one of the clays before, it does not mean that this one will not work.
This clay has an amazing ability to relieve the pain and has strong anti-bacterial properties.
I know that many people will think that I am a "crazy nut" for suggesting you this. One thing I can say: I am in remission with 0 symptoms of colitis. Call me crazy if you want to.

Have you ever seen a naturopathic doctor? They might have some ideas regarding your diet or supplements that you haven't tried.

Kloe0038- yeah have seen a couple naturopaths- nothing really works. My paleo diet keeps things grom being much worse but currently in worst flare in years after a great 10mo remission. Have even tried fecal therapy and three types of worm therapies. Still i do not feel ready for surgery- that may change as this fight becomes more and more absurd but i really want to rude out the flare and regroup.

Thanks, nktsosicklygirl- yeah tried Fecal transplant, home brewed but using the full saline enema setup and my girlfriend's (now wife's) stool- a few years aho and it flared me up more, noticably. I stopped after a few days. I wasnt able to hold it in mkre than an hour or two at best, for that matter, and one of the days just 5 minutes. I did get her tested per the Borody protocol but many of the test results are hazy and vague (tests alone for he cost me over $1000 out of pocket for just about half if the things Barody lists), and with hindsight, she was not an ideal dnor as her stools tend to be soft and even loose here and there i e a bit IBSish sometimes. In the fall I may get a chance to use a niece, who lives overseas, as a donor though I would opt to just use cleaned out, empty fleet enema bottles next time should I still have a colon in the fall.

Tried Imuran some years back and it didnt really do much- might have marginally suppressed the UC- very sightly- though, like biologics, I got upper respiratory infections, fatigue, and strange episodes of bursitis out of the blue while on it and that was while being "underdosed". Still, I am considering asking to try 6MP (what Imuran is metabolised to) since i was never on that label yet, nor was I prometheus tested.

If I can manage to taper down to 10 mgpred then I am cautiously optimistic that I can benefit from LDN again. Not sure why the remission ended a couoke months back whike on LDN but it may have been because I was not "stopping and restarting" the LDN every couple weeks for a few days to prevent desensitization- and now that I am I am on higher dose pred, LDN almost ctainky is nit going to have any effect.

Taking lots of turmeric, but thanks for asking. My signature line would be a few pages long if I listed what I take, tried etc lol- but I guess Maybe I should update it with an abbreviated list. Years back I did try a naturopath's protocol of natural antibiotics- goldenseal, wormwood, oregano oil etc- flared me up horribly. i attribute the end of a ten year remission as well as a one year remission to medical antibiotics so I am not willing to try a medical antibiotic cocktail approach. (OT but that's something I find terrifying about jpouch prospects- it seems a fair percentage get chronic pouchitis that requires continuois, lifelong use of cipro etc which I find an appalling prospect).