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Posted 11/30/2014 1:43 PM (GMT 0)
Hi, after 2 years of dealing and struggling with UC I was admitted to hospital on 11th November and hooked up to IV. Bloods came back not responding, frequent visits (a lot less that 30) but still blood and Diahorria. During hospital stay I had another trip to Endosopy and found my UC at severe and was then hooked up to Ciclosporin which was showing no improvements. I then decided I could take any more pain and heart ache so I asked for emergency surgery.

I had my surgery on Thursday 20th November and was an success. Most of the affected large bowel removed which rectum and bowel that's still affected left Incase we look to go to J-Pouch.

I came out of hospital on 26th November and each day has it ups and downs. I'm managing so well with the bag either when emptying or changing. The consistency have thickened up well too...

My issue is that I've lost a hell of a lot of weight, that's normal right? But what's really getting me is the Prednisolone!!!!! I'm on 30mg till Monday then 25mg (week) then 20 until just on 5mg in 6 weeks time.... The Prednisolone is making me feel that I have the worst taste in my mouth ever and has also affected my appetite..... Today I don't have the taste to eat but Friday night I was demolishing a Chinese with my wife....

Is this all normal especially when only been out of surgery 10 days?

All in all, I'm loving life with the bag considering the pain I was going through. But just after some advice on above!!
Posted 11/30/2014 2:46 PM (GMT 0)
I don't remember pred giving me a nasty taste in my mouth, but it does have some pretty gruesome side effects! The taper you're on is going to suck, plain & simple. But, once it's done, you're most likely done with pred forever! Hopefully! You're appetite will increase, as you heal- I had surgery about 8 months ago, & have gained almost 15 lbs. since then! A little nuts. Good thing I had some wiggle room, I was under-weight going into surgery. Congrats on managing the ostomy ok- it is a nice feeling to have the UC gone. Just be wary when eating things like Chinese/veggies, etc. so soon after surgery- chew really well! I've never had a blockage, but I guess veggies can be a culprit. I do eat them though, all cooked. Enjoy your freedom!
Posted 11/30/2014 5:35 PM (GMT 0)
Thanks Eva Lou, appreciate the reply.

Just managed my first outing for family meal and managed to scoff quite a bit scampi and chips plus ice cream. I may suffer later..

I'm gathering the Pred is treating my rectum for last remaining UC then I hope once Pred has done its thing then that's that.

I know at the moment I look terrible but knowing im not constantly sweating, pooing bloody diahorria 30+ times a day it's all systems go to make me not look terrible.

Long road to recovery
Posted 11/30/2014 9:33 PM (GMT 0)
Just had my surgery November 3rd after 2 rounds in hospital since July and large amounts of predisone. I also had bad taste in mouth that affected appetite. Found out that predisone can cause a type of yeast infection in your throat and mouth called "Thrush". Stick out your tongue and if it is white, you most likely have thrush which can be treated with antibiotics. Hope this helps.
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