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Ulcerative Colitis and elective surgery

Posted , 6 users are following.

suzanne2383
suzanne2383

Hi All - Im just wondering if anyone has had surgery for their UC and was it elective or necessary. I have been in a major flare up since Aug and its really getting me down. Ive tried various steroids but nothing is getting it under control. I am really struggling both physically and now mentally, I have been diagnosed with Severe Health Anxiety and PTSD and this is just adding to the stress. Any advice would be greatly appreciated. Thanks

0 likes, 9 replies

9 Replies

  • angela97495
    angela97495 suzanne2383

    Posted

    Hi Suzanne2383. I am having elective surgery in January. I have tried everything they have to offer with no luck. I am currently on Vedolizimub which has stopped the bleeding but not the pain or the accidents. So after discussions with my consultant we decided between us that a total Proctocolectomy is the only way forward. Your consultant will only agree if they feel all other avenues have been exhausted so don't feel you are making such a big decision on your own they will be with you every step of the processes and will always take your wishes into consideration. For me I really feel I have made the right decision as like you my anxiety is through the roof which is another reason they were happy to go ahead with surgery. Good luck xx

    • suzanne2383
      suzanne2383 angela97495

      Posted

      thank you so much angela for sharing your story. do you mind me asking how old you are and what actually is the surgery you are having. i have heard of the ops where you have a stoma fitted but ive read aomewhere they can do an operation without that now

    • angela97495
      angela97495 suzanne2383

      Posted

      I'm 47. I was diagnosed with proctitis back in 2012 and in June this year I was diagnosed with Pancolitis which means the anus, rectum and whole colon are infected therefore they will be removing my anus,rectum and colon so basically my bum will be stitched closed and I will have a permanent stoma. There are a few different types of procedures including a j pouch which is where they remove the colon and you have a pouch which is connected to the rectum or you can a temporary stoma which is reversible. Have a look at stoma wise or crohns and colitis UK websites as they explain all the different procedures xx

  • laciaboots
    laciaboots suzanne2383

    Posted

    hi Suzanne I had total bowel removed when I was 19 for uc. and bottom sewn up as had colon etc removed also. i had no choice it was live or die as i lost 4 pints of blood within 12 months. i am now 54 and it has not stopped me doing anything. i wear tight jeans etc. im married for 26 years. and love life is not effected in any way. i know u can get internal pouch sometimes. but if uc left too long there is not always an option for that. i have never felt sorry for myself and I was pleased to get rid of the pain etc. i hope this helps. i can answer any questions you want even personal ones if it helps u feel better about uc etc. alicia

  • cjb106
    cjb106 suzanne2383

    Posted

    It may feel not like it but August is not such a long time for a bad flare and there are many other drug treatments for your specialist to try. You don't say how badly your colon is affected or how long you have had UC. What were the results of your latest coIonoscopy and blood work?

    I do know where you are at because I was hospitalized May 2018 after getting stuck in a four month flare. I was initially diagnosed with UC late 2015 and had flared and remitted four times between then and October 2016. I am convinced those reflares were to do with tapering off steroids too quickly.

    The fifth and worst flare was from Feb 2018 to May 2018. I think that flare was triggered by a gastric bug. The spike in my ESR/C-RP readings was alarming. After yet another colonoscopy, the diagnosis was changed from an initial mild to moderate in 2015 to severe. I needed a week in hospital on IV steroids get things under control, then oral steroids and a very slow taper this time plus 5ASA until I went into remission October 2018 where I have remained for over a year. I now just take a 5ASA to keep inflammation at bay.

    While I was in hospital, I did feel very low. 2016 and 2017 had been pretty much wiped out with trying to cope with the disease. I'd felt well for all of three months before it flared up again in Feb 2018 and hated how steroids made me feel. At the time, I couldn't see an end to all this so I asked about the doctor about elective surgery. He explained the alternative drug treatments he would prefer to try before going down that route. Luckily the steroid/5ASA worked that time. Next time he is proposing azathioprine. I am in my 60s, at that age when steroids could be damaging my bones putting me at risk of osteoporosis.

    I'm not under any illusion that this disease will ever go away, only kept at bay, but for now I have been well for a year and avoided surgery. Who knows what the future holds but I am heartened by the stories of people who have had surgery and live full lives with stomas.

  • sheila13482
    sheila13482 suzanne2383

    Posted

    Hi Suzanne, Sorry for your pain, literally, UC is a b*tch.

    My son had an emergency illeostomy at 27 after a huge flare with UC after only being diagnosed 3 months before. He had a stoma for nearly 1 year as needed to recover from the surgery, full scar not keyhole as emergency, and needing to recover from 3 stone weight loss, anaemia etc. He had a j pouch reversal to get rid of the stoma, it had saved his life but as a sportsman he was determined to reverse.

    It has been 4 1/2 years now since the 2 short ops to remove the stoma and build the pouch. He is one of the lucky ones who have had a perfectly successful reversal, long may it last. He has no accidents, goes 3 times a day and is in full control. I do believe his life is so much better as he has no meds, no med side effects, no disease and eats everything he wants. If he had not had the large intestine removed he would really have struggled with the disease and the meds, he hated them, and the poor health. He still earns a living as a sportsman and plays for fun too and is totally fit again.

    Will write more in next reply as sometimes posts don't appear, for some reason!!

    Sheila.

    • sheila13482
      sheila13482

      Posted

      Hi Suzanne, I have been on forums for a while as life is busy.

      My son had his reversal at John Radcliffe Hosp Oxford and they were a God send. After his less than brilliant surgery at local hosp we researched and spoke to people who had first hand experience of reversal. I believe St Mark's Harrow is also brilliant. We so wish he had attended either hosp from the beginning of his symptoms but thing moved quickly.

      His illeostomy left the rectum so could be reversed and he had some symptoms from that remainder of the large intestine and so had meds for a year to reduce discharge, no pain. He then had the pouch formed from lower end of small intestine by keyhole surgery, short recovery. Once pouch watertight his stoma was removed, as was mucous fistula and connected up. He was given exercises to do to ensure he had muscle control to empty pouch and stop any accidents. He was young and stubborn and previously fit so we expected good results.

      Do your research as there are several surgeries out there for colon removal and pouch reversal. Ask any questions you like. Do go to a surgeon and hospital where they do these surgeries very regularly. It is very important to have experts not general surgeons at a specialist dept as they know what they are doing and the after care and advice are critical. Also you need to be treated to avoid DVT s after surgery, ask them for that!

      Best of luck, remember ask anything you like as I have some experience.

      Regards Sheila.

  • leonard89152
    leonard89152 suzanne2383

    Posted

    hi i am lenny now i had it just as bad as you if not worse when one is not eating

    and trying to remove ones inside at you know were with no sleep going to the bath room 14 times just at night this was at the age of 12 and at 18 had enough so i had surgery i am now reaching 70 and

    the old bags i used after the opp were not very good the ones of today are great take the addvice of your doctor but make no mistake life can be great if all goes well all the best len

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