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Total Colectomy, now proctitis...need some help!

Posted , 8 users are following.

JonWHut
JonWHut

5 years ago I was diagnosed ith UC completly out of the blue...had no idea I had it! 7 days later I was blue lighted to hospital and had my entire colon removed. Had a Ileostomy until a reversal a year later. I hated the Ileostomy...

Any way now a few years down the line and I'm struggling. Proctitis flare ups, had steriods and on mezasaline, bit it doesn't seem to be making any difference. Bowel movements around 12+ per day with 3 or so at night.

So I'm knackered, down and tired of it all! 

Any words of wisdom??? Diet's that may help, anything else to try???

Waiting for an appointment with another specialist as the surgeon has passed me on...

Anything please???

0 likes, 18 replies

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  • brightside2016
    brightside2016 JonWHut

    Posted

    thank you so much for your advice, I feel sorry for you if you have to have yet another op, but theres nothing worse than spending most of your time on the loo. I still have colitis in my 'stump' I have to use asacol depositries and colifoam - they are keeping to stump if they need it for the reversal. thanks again I have never messaged anyone with colitis before! I may message you again in the future if thats ok. ps i have a holiday in Ibiza in July that I booked before my flare up, it doesnt really bother me if people see my bag as I use those covers you can get them in various colours! I dont like the feeling of a wet heavy bag tho! I was going to cancel the holiday but I cant let my family down. Anyway I hope your meds start to work for you. bye for now.
    • JonWHut
      JonWHut brightside2016

      Posted

      Anytime or anything please feel free to message me - more than happy to share my experiences if it could help others.

      Unfortunately its the stump part thats causing me the issue at the moment, I was told there was a small risk the colitis may spread to it, and may have been lucky until recently.

      I have an appointment with a gasto specialist on the 30th, fingers crossed he has some answers, if not then I'll push for the op to get my life back...or thats the plan hopefully.

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