Hi All,
Firstly I must say I'm so pleased to finally have found a site that recognises cc/lc! I have been suffering now for some 10 years! Im in the UK and unfortunately due to an incompetant doctor took some 6 years and reading a newspaper article followed by referring myself to a specialist to get a diagnosis.
My Gastro dr took biopsies, diagnosed me and prescribed budesonide 9mg and advised that this would be for 3 months and all symptoms would disappear! Hurrah I thought!!! Some 4 years later, 600 new eating plans tried to include only ingesting AIR! Im still on budesonide, never really get more than a few months at a time of feeling relatively normal. Had huge flare earlier this year that appears to happen every time i reduce to 3mg so increased back up to 9mg together with starting KETO. Keto seemed to make me sooooo much worse and after 3 months came off it feeling better and in control in my opinion due to the medication. I have been weaning again now and was doing really well until Monday of this week when i woke with a ring of pain from hip to hip and D really explosive again. As i write this i find my self at the end of my tether!!!! Pain still there but D subsided in frequency, just got that bloated cork up my backside feeling.
I think if I'm honest i tend to self sabotage at this stage eating whatever I want as I'm sick anyway which i know is not helpful but tummy growling all the time, feeling very very low and any temporary pleasure is most welcomed!!!
Sorry for the long first post but just struggling at the moment.
Long suffering CC
Re: Long suffering CC
Hello Emma,
Welcome to the group. Don't give up — there's sill hope. Published research shows that 85 % of MC patients relapse when a budesonide treatment is ended. Please be aware that research also shows that budesonide becomes a little less effective, each time it is stopped, and restarted. You need to get your diet sorted out before budesonide completely loses it's effectiveness for you.
Are you following any diet now? Gluten absolutely must be eliminated from the diet of MC patients before most other food sensitivities can be determined. The best way to control MC is by diet changes, and it usually can be done without any medications
Again, welcome aboard, and please feel free to ask amything.
Tex
Welcome to the group. Don't give up — there's sill hope. Published research shows that 85 % of MC patients relapse when a budesonide treatment is ended. Please be aware that research also shows that budesonide becomes a little less effective, each time it is stopped, and restarted. You need to get your diet sorted out before budesonide completely loses it's effectiveness for you.
Are you following any diet now? Gluten absolutely must be eliminated from the diet of MC patients before most other food sensitivities can be determined. The best way to control MC is by diet changes, and it usually can be done without any medications
Again, welcome aboard, and please feel free to ask amything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.