SophieL said:
Vicky, hats off to you, amazing that you can ride, I tried riding a bike with not so nice consequences. Foam enemas... sounds like great fun. I tried Pentasa but had real difficulties using the suppositories with the fissures so open and sore. I did try a strong steroid topical cream but was scared of skin thinning with prolonged use. Have you tried pred enemas then?
What's an elemental diet? Sorry if this is an obvious question. When did aza start working for you? Or do you think it's not that helpful for fissures/abcesses? I've been on 50mg for 3 months and nothing, still blood and pain everyday. What I've gathered about infliximab is that it's often used for closing fistulas - I don't have any of these luckily so maybe it wouldn't be the right choice for me.
Thanks, sorry for all the questions! Very new territory
Its ok, thats what we're here for!
I was on Predfoam enemas a while ago, back in 2003, i didnt particularly like them, but got used to them. To be honest i cant remember how long i was on them for, i just remember my doc wanting me to be on these instead so steroids didnt effect my entire body. But i think i still ended up on steroids! Lol!
An elemental diet is a 'no residue complete food replacement diet' it comes in liquid form. The idea is that it gets directly absorbed and requires very little or no digesting, and therefore produces little or no poop. That was key for me, poop kept 'contaminating' my abcess and making it worse. Feel free to ask me any questions. Also me and Jan (soupdragon69) are pretty much experts
so im sure she'll be happy to answer any questions also coz she's on it at the mo!
I've been an Aza for ages too, (i think way past the recomendation about 5 years!) I never noticed a significant difference when i started it. I know it takes a few months to kick in (as they've probably told you). But i can tell you that when i stopped taking mine (when i wasnt supposed to, coz i thought it wasnt working) I was the same for a fair few months then i got a BAD flare up! So even when i dont feel great on it, i know its better than not being on it!! lol! I've always been on 150mg.
As you said infliximab is supposed to be best for fistulas (which ive never really noticed to be honset) after my 15th infusion, me (and my doc) decided i wasnt getting any great improvement from it anymore so we missed one last May (with the idea to stop) , and by June I was back in hospital with an abdominal mass! So as you can guess we quickly put me back on it.
Overall i think elemental diets and infliximab might be something to consider if you get other problems in the future.
Hope that helps- sorry its a bit rambly!