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Elective colectomy for UC

Posted , 11 users are following.

karen23417
karen23417

Hi,

i am wondering if anyone has had an elective colectomy and regreted it.

i am 27, and have had ulcerative colitis for 6 years (5 years diagnosed). I have 2 young children, work part time and study at an online university.

i have been on sulphasalazine since being diagnosed and used codiene to manage the pain during flares. While pregnat with both my children my colitis was basically non existant and other that the standard discomforts of pregnancy I felt fantastic, after each pregnancy however, my colitis has become worse.

Since the birth of my daughter 10 months ago I have been in a near  constant flare. A good day for me is around 10 bowel movements, all ranging from soft to water, and very painful.

i am currently dependent on prednisone to keep my symptoms at a minimum and the codiene is no longer helping with the pain. I recently was given 6MP to try, however I had a reaction to it and am unable to continue taking it. I have been told that this limits the remaining treatment options available.

i am strongly considering having an elective total colectomy in order to rid myself of the diease for good. I want my life back, I want to be able to enjoy my children and my husband, i want to be able to give them all my time rather than being stuck in the loo or curled up in pain. I want to be able to socialise again and enjoy my work. Basically i want my life back.

Every story I have read for people who have had a colectomy wish they had done it sooner. I really want to know if anyone regrets it?

i will be seeing my dr again in a couple of week so I am keen to arm myself with as much information as possible prior to that appointment.

my husband is very supportive and agrees that it is probably be the best option for us. When i spoke to my mum about it she yelled at me about it being a stupid idea, but she doesnt see the struggle I have everyday. 

All input is very welcome. smile

karen 

2 likes, 124 replies

124 Replies

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  • mzmcgee1231
    mzmcgee1231 karen23417

    Posted

    Karen i feel your pain...i been suffering with colitis since june 2014 an my symptoms been getting worst by the day....i myself is going to the bathroom the same with u...i been reading many stories about the colectomy... the only problem i read that was bad about it is that u will have to still go to the bathroom about 5 times a day....BUT... u will be pain free disease free an never have to take any medicine for it again....basically u will be healed... im considering the colectomy too....yes mom has no idea how this affects your life...sorry mom lol....id rather the colectomy myself to be free from this mess....oh an another thing i read is that...once its done your chances of having kids will be slim to none...so make sure u dont want more kids.....good luck
    • Maryjo
      Maryjo mzmcgee1231

      Posted

      hi...going to empty the bag during the day is not too bad and once u get the hang of it u can hav it emptied and cleaned in few minutes. It's def better than the pain the cramps the bleeding etc. I feel so much healthier now. There are still many people out there who go on to have children . MJ
    • sheila91262
      sheila91262 mzmcgee1231

      Posted

      Just read this and confused by the kids bit, It's the large bowel they remove you know, no where near the other bits. After all the procreation process involves the lower regions. Am I being suttle enough.

      I suggest you buy a biology book.

  • sheila91262
    sheila91262 karen23417

    Posted

    Hi Karen, My son developed UC in Oct 13 and was admitted to hosp with severe symptoms in Dec 13. He was 27 at the time and super fit and healthy. He responded well at first to meds but he flared again v soon and lost 2 1/2 stone. He unfortunately perforated in 2 places in his large bowel and had life saving surgery to remove his large bowel and produce a stoma and mucous fistula. He was 9 days in critical care and a further 5 days on the ward. He had 37 staples in his abdomen because he had emergency surgery. He would have had keyhole surgery if he had elected to have surgery but at that time the docs were trying to save him from surgery. So he would have had a small scar instead of a big one and recovered much quicker and not developed peritonitis and pneumonia, if he had agreed to the surgery as the docs were saying he would prob need it. But hindsight is a wonderful thing. He recovered well and was able to eat and drink normally again with no pain. Having a stoma to empty several times a day was hard but compared to the severe pain, urgency and bleeding and amaemia, meds and sideaffects it was easier.

    IBd is ugly and painful and frightening and you have my sympathy. We have learned to ask lots of questions and if we could do anything different it would be not to rely on consultants and surgeons who have only a few patients a week to treat in a general hospital as they are not as good as the experts in the specialist hospitals. If you are not there already get a referral to St Marks London or John Radcliffe Oxford( brilliant).

    My son has now had the first of 2 ops to reverse his ileostomy, he has stoma and a j pouch and next month he will have the final op, key hole, to attach to the pouch and close the stoma and so will go to the toilet in the usual way! He has chosen this because of playing sport and not having a stoma bag anymore. Hopefully all will work well and he will be disease free and normal weight and able to swimm etc as usual. After all the large bowel only reabsorbs water and forms a reservoir for waste. He needs to take B vitamins and drink more liquid but otherwise he is med free.

    I hope this helps. Also be aware that people with IBD are more prone to getting dvts so ask questions about this if you have surgery. Good luck.confused

    • sheila91262
      sheila91262 mzmcgee1231

      Posted

      Hi People with IBD are more prone to DVTs ie deep vein thrombosis. The Crohns and Colitis  assoc say it may be as much as 3 times as likely to occur. My son had a severe DVT after an emergency illeostomy in hospital after a massive flare up. He was immobile, bed bound, anaemic, undernourished and immuno suppresed from steroids etc. All of which contributed to his thrombosis. But his hospital still didnt send him home with blood thinners. We know lots about DVT now but didnt then, so be aware and prevent it happening!
    • Maryjo
      Maryjo sheila91262

      Posted

      Hi....I didn't realise stats for DVT is as high. Is this in spite of people having blood thinners or because they onto haae them. I know hospital I am going to uses blood thinners.....I would certainly be asking for them if I was to be immobile for period of time. After spending x amount of hours on a theatre table and then in a recovery ward followed by a further period of immobility albeit hopefully relatively short I DEFINETLY feel blood thinners are needed . I have always taken fish oil tablets or  or vit E capsules so hopefully that keeps my blood right on a day to day basis. MJ
    • sheila91262
      sheila91262 Maryjo

      Posted

      Hi My son's problem was that they didnt asess him carefully enough after he left hospital. Most other hospitals send IBD sufferers home with heparin for 28 to 90 days after they have been in hospital for surgery. The gastro doctors didnt take into account the blood clotting risk of IBD or the fact that my son was too anaemic to be as  mobile as is recommended. They also didnt mention dvt risk or send him home with the written info which is a NHS procedure. Not surprisingly we have gone through the complaints procedure and are now on to the Ombudsmen to get answers.

                        So the risk of getting a dvt is reduced by staying mobile, hydrated and not anaemic and being on blood thinners for long enough. You can ask about your own risk assesment in hosp and discuss the options. My son's new surgery is at John Radcliffe and they are 5*. His first surgery was a general hosp are were not experienced enough to safeguard  him and he perforated and had emergency ileostomy, wouldnt go there again.

      Good luck, ask lots of questions and keep informed.

    • Maryjo
      Maryjo sheila91262

      Posted

      Yeah ...hospitals who specialise are usually more clued in . I used to work for health service so have some knowledge of the whats and where fores not that will guarantee stuff happening or not happening but hopefully reduce risks. There is a great shortage of good and compassionate staff about these days. Paperwork has taken over hospitals leaving little time for much else unfortunately !

      I have read and read and read ....the hospital consultant said there was little else he could tell me lol and lots of questions too. I also went to c a lady from Ileostomy Ass and she was great.Stoma nurse and him have been great. My iron stores are very low and oral stuff has did me no good so he is getting me sorted with couple iv infusions thankfully as my energy levels are rubbish . If I have as good a surgery and post op experience I will b very grateful.

      I remember first time flare and diagnosis years ago when little was known in ibd field being in small rural hospital and if I had have stayed much longer round it I would have died for their lack of knowledge ! Fortunately I got to the city hospital where there were specialists in it  and got better treatment. 

      I hope ur son has a much better experience next time round as he certainly deserves it ! And all goes really well for him. 😊 MJ

    • sheila91262
      sheila91262 Maryjo

      Posted

      Hi, thanks for the encouragement, everything to do with a chronic disease is so difficult to take in as so many people have different symptoms and treatments. I found the charity useful at times but they certainly dont know it all. You didnt say whether you are having keyhole or otherwise.

      My son ended up with blood transfusions as his iron level was so low.

      I have heard good things about the iron infusions though.

      Good luck

    • Maryjo
      Maryjo sheila91262

      Posted

      I think u probably hav to just constantly ask round for info as there appears to b so much out there and it depends on attitudes and how each individual deals with it. Everyone has there own perspective on situation and there's such a variance at times.

      My actual haemoglobin is low but not too bad....my actual iron stores are near rock bottom ! Yeah some pregnant ladies need them due to stores falling...makes quite a difference. 

      Yeah keyhole all things being well. As I said to him I hav had no abdominal surgery and I don't even hav stretch mark 4 children later lol .I asked to b referred to consult who does it here and he appears to b one who does majority of it here. He seems very competent and very confident very reassuring and very nice. Case my life in his hands ! So here's hoping he comes through for me ! 3 weeks today 😱 MJ

    • karen23417
      karen23417 Maryjo

      Posted

      Hi Maryjo, i just wanted to check in and see how you are doing 6 months down the track.

      i had a laproscopy yesterday, looks like all my issues could be due to endometriosis. Fingers crossed i can find the right treatment and move on with my life.

      hope you are well x

    • Maryjo
      Maryjo karen23417

      Posted

      Karen...lovely to hear from u 😊 I'm so happy for u that they hav given u diagnosis and u can hav proper treatment. Endometriosis also can wreak havoc on your system.. I came across a few ladies with my work in my life that had it but with proper treatment u should feel so much better. As for me have settled into way of life with stoma. 😊 Still trying to cuss out bags as previous 1 I had behaved badly after yoga  but at mo latest 1 seems to b much better. I feel so much better can eat anything I want and my friends say they hav never seen me look so well 😍 . Am very busy now ...would need a 9 day week lol but at least I do not feel unwell...funny how it all fades away the pain and inconvenience of having had uc. Anyway am sure u r busy coming up to Christmas ( if u celebrate it ) and I hope u and ur family have a lovely one ! MJ xx
  • karen23417
    karen23417

    Posted

    I had my first dose of renicade today which is my last option for medication. It turns out i am allergic to 6mp which also rules out alot of other drugs. 

    My dr supported my decision to see a surgeon to discuss my options so we will see what happens!

  • maxine38596
    maxine38596 karen23417

    Posted

    Good luck Karen I gave had bowel surgery for cancer and am doing well. I also have a young friend of 19 who has your problem she had her second bowel op in January and has the J pouch. I am very pleased to say she is doing extremely well. The difference in her life is amazing. She was suffering so much with the UC. And doesn't regret having had to have the surgery. So the best of luck and I hope everything works out for you and you can enjoy your children and husband. Many many years of happiness coming your way. 🌻🌻🌻
    • maxine38596
      maxine38596

      Posted

      I also live in Australia and had my op in Wollongong privately with a colorectal surgeon and my friend had her op in Brisbane with a colorectal surgeon. So I am sure u will be in good hands in Sydney xxx
    • karen23417
      karen23417 maxine38596

      Posted

      May i ask who did your surgery. Only because there was someone seeing the same dr who had come from wollongong. I am seeing prof michael soloman.
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