Looks Like It's Curtains For My J-Pouch

Oh okay. Forget Fortisip then :-/

I'm not sure about the biologics either... Dumb question probably, but if latent TB is what is preventing you from going on a biologic, can it not be treated with anything?

NCOT, I was told Remicade would be a definite no for UC. I don't know if methods have changed, I guess I'll probably find out in due course. My GP has written to both my Surgeon and the Gastro I used to see for UC (that my surgeon has been consulting with also), to pose the question of should I be seeing the Gastro too?
I've now had my second 40mg's of Pred and don't feel any benefit. I know that may sound impatient, but I treated many flares of UC with them, very often feeling the effects after the first dose.
Being a pessimist, I can't help feeling that as my Pancolitis became totally refractory to meds, what's to say this Cuffitis isn't as well?
Oh well, I'll keep posting my tale of misery here, where (unfortunately) people understand it! Please keep replying with your thoughts, it does help when one is feeling as low as I do at the moment.

NSSG, I already tried steroid suppos for a week. I admit it's probably not long enough, but they hurt so much going in that I decided to try oral pred. Loop ileos can be a pain, try some peanut butter and jam (jelly if you're in the USA) sandwiches, along with apple sauce. Although I'm guessing you already have tried those things.

Silent Lucidity said...
NSSG, I already tried steroid suppos for a week. I admit it's probably not long enough, but they hurt so much going in that I decided to try oral pred. Loop ileos can be a pain, try some peanut butter and jam (jelly if you're in the USA) sandwiches, along with apple sauce. Although I'm guessing you already have tried those things.

Thanks for the ideas. I actually haven't tried anything yet. I've only had this loop for a week. I did a change earlier and it went better than I expected so that is good at least. Feeling less negative overall but I am worried about staying hydrated as this thing never stops going I need to get some stuff at the store - will add those items to my list for sure. Can't live without peanut butter regardless and I am out.

Silent Lucidity said...
Solomon, I have NEVER seen bleeding in my stool. I keep being told I'm bleeding inside, so where the **** does it go?!?!?!
I have been doing some reading, and it seems there are some treatment options my surgeon isn't considering. Why hasn't he mentioned Azathioprine, Biologicals, or, maybe a bit more extreme, Kenalog (topical steroid injection)? I'm sure I don't need to tell the folks here, these are all viable UC treatments, and Cuffitis, is UC of the remaining rectal cuff. Surely these should be being considered?!?! I'm really starting to wonder how out of his depth he is? If he has to consult with a Gastroenterologist about something so basic as oral steroids, maybe I actually need to be seeing the Gastro? Especially as he asked when I last saw one? Like, duh, I've been under YOUR care for a year now, shouldn't you know this stuff?!?!
Apologies for my over punctuation and exclamation marks, but this is all stressing me out SO badly!

You 100% for sure need a gastro. The only reason that CRS take care of a jpouch is that a gastro might not be expected to know how to care for it. In truth, the people treating (non-surgical) pouch issues at any major center are gastros.

I understand your willingness to give meds a try. I saw a picture of a jp drain and a foley catheter and the remembrance of the sheer hell of the first surgery came back to me. The thing is, feeling healthy several weeks after surgery was amazing. I remember leaving the house laughing, almost crying, at how great it was to go jogging and traveling without having pain or worrying about the bathroom. That memory is what pouch excision seem conceivable if and when there isn't a good alternative to giving me quality of life.

I would strongly suggest you try xifaxin (rifaxamin) for pouchitis. It is the safest, albeit expensive, of the antibiotics. Try both mesalamine (canasa) and steroid suppositories for the cuff. Pair this with VSL#3.

If it comes to maintenance immunosuppressants, mesalamine probably won't do much for your pouchitis and you can't stay on steroids. Biologics like Entyvio or Humira might be the best/safest for long term use

I would be unwilling to do maintenance medication, definitely including maintenance antibiotics. I do believe that your flora is an asset and that completely trashing it will have lifelong consequences.

I don't care about my pouch. I don't care about using my butt anymore. I just want to live without medical issues, and as someone who was able to get over having a stoma, I won't do anything just to keep this jpouch.

Best wishes SL. Quality of life is the main goal we set out for when we opted for surgery. Hopefully you can get on with it soon and put this all finally behind you.

Thanks Eva, currently waiting for the next surgical appointment. Hopefully we can then start formulating a plan of action.

 good luck! Keep us posted~

So glad you are finally getting some action. Hope things go well, you really deserve a break.

Ann

Yeah, it was me who had a positive tb test back in the 60's when I was working in a hospital. Had the TB test in order to travel overseas and was shocked when I had a reaction. They took chest xrays and never found anything. Fast forward to 2008...had blow out argument with GI doctor who insisted I go on Remicade...retested for TB and it was negative...go figure. Anyhoo....did try Remicade, basically so my GI doctor could win his cruise for pushing the biologic (that's a fact ya know), he was happy....I built up antibodies to it relatively fast...failed after 3rd infusion. Tried Humira for 3 months...failed...then bit the bullet and had colon removed.

Best of luck, and I would think pre-surgical nerves is a sign of health.... it's a big deal.

Just thought you should all know that they turfed me back out of hospital on Thursday. Took 3 days for someone from the nutrition team to see me, assess I don't need TPN, and send me home to continue my "recovery", until they actually call me up to do the surgery. Meanwhile, I have to go back as an outpatient for ANOTHER proctoscopy. Quite why this is necessary, or why they couldn't do it during my FOUR day hospital stay is beyond me. Feeling cheesed off to say the least.