Colitus flare again

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Hello guys just got out of hospital today after 12days in due to flare, ive had colitus for 8years now and am on mezalasine tabs and foam enemas, i did try azathroprine but kidneys didnt react well to it, they keep talking about bio logics but ive read some horrible stories about that and have 4 kids at home so dont know what to do for the best really, they said surgery might be an option but said there are risks with that aswell, doesnt sound hopefully at all and just dont know what to do really as just scared, my inflammation has reduced just the diahrrea and cramps that are easing and fingers crossed go and improve before the oral steriods finish, thank you for reading the rant and thank you for any advice hope everyone well x

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  • Posted

    Hi Jenny, hope things work out well for you. No rant, just  speaking your mind. UC is a difficult disesase. I have written loads on here as my son age 27, had sudden severe UC, loads of meds and because they wanted him to take less steroids he went on a reducing dose and he flared up and ended up in hospital. He was on Infliximab but it didn't help soon enough and he perforated in his colon in 2 places. Emergency ileostomy and 9 days in critical care. I tell you this not to worry you but to help if it comes to surgery. Elective surgery can be easier as can be performed by key hole and quicker recovery as smaller scars. My son coped with his stoma and then a year later had a reversal using a j pouch. He is incredibly well now, no meds, eats everything, back to full weight and fit and active. Apart from his surgery scars it is as if he never developed UC. He had the j pouch surgery at John Radcliffe hosp Oxford, we travelled there as highly recommended, safely say utterly brilliant. He sits for the loo, uses his rectal muscle to control his ablutions, no problems, goes 3 or 4 times a day. He has a new normal but is fine with that. They removed the end of his colon when they made the J pouch so no UC symptoms, but retained rectal muscles for control. 

    Try not to worry, we were told about a third are controlled by meds, a third have surgery early on and a third end up with surgery after meds fail. Son has no regrets, such a shame he got UC but he feels this is a good result, mainly because he hated the meds and side effects and fatigue. There are several on here who post about their surgery and some of them have pouches.

    Sheila.

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    • Posted

      Hello shelia thank you for your reply, yes ive heard a few people recommend that hospital, i live in essex so think it would be a bit far for me, blood tests have shown inflammation has really reduced which is really good ive heard alot of good things about the surgery aswell just think the surgen i saw on the day had an 'off day' as was quiet abrupt and rude and put me off it completly and think now i not sure if i would trust my life in their hands, would i have to get reccomended to go to that hospital your son went to?? Very good news about your son aswell and glad all things going well for him

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    • Posted

      Thanks Jenny. St Marks Hosp Harrow, London is nearer and  great too, those 2 are the UK's top Gastro departments. Your Gp can do a referral for you under NHS choices. We moved from first surgery at local hospital as only ok not great to John radcliffe. Aftercare was excellent and that is so important. Also they treated him like a human being which when he is so young is so important. Good luck with your choices, just be aware the surgery is not the end but it can be the beginning. XX

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    • Posted

      Good morning shelia, thank you i will enquire about st marks hospital, yes i agree surgery can be a new lease of life after uc and thats what really appealled to me as i have 4 children and in and out of hospital is not ideal (for anyone really not just me) so when they said surgery i thought yes get rid of it once and for all, but when the surgen came round he was quiet rude and abrupt and was talking bout kidney failures and dying on the table!! I was very very emotional once he left as you could imagine, didnt see no light at end of tunnel etc, family complained about him and his attitude so any surgery at my local hospital doesnt really appeal to me as you have to trust them, so thank you for the other hospital i will enquire about that one, and thank you for taking time to reply its much appreciated thank you shelia x
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    • Posted

      Hi Jenny, thanks for your nice reply. I still post in several places as having feedback can be helpful and sometimes you are not always aware of the choices out there. My son has no idea I speak about his bottom!! but he is busy out there living his life and enjoying every moment. Take care and enjoy your family. Sheila.
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