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I have now been advised to have full colon removal

Posted , 10 users are following.

johnc7524
johnc7524

Hi all after being diagnosed with indeterminate colitis I was placed on maselazine and steroids, however I have still been having flare ups so I went back to the consultant and was advised I would not be able to go onto immune suppresents due to being on anti retro vitals, so the only cause of action is that I have been given is removal of my colon etc, they plan to do this over the next 3 months. Has anyone else had any experience of this and does it help improve quality of life thanks for reading. And have a good weekend John 

0 likes, 31 replies

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  • JonWHut
    JonWHut johnc7524

    Posted

    Hi John,

    I have had a total colectomy, although I didn't have much choice...mine was an emergency op. I was diagnosed then 10 days later under the knife. I must have been hiding the symptons for some time.

    Anyway, I didn't handle the stoma as it came as a shock to me. I knew very little about it all until it was on me. I had the reversal around a year later and all seem to be going ok. That was about 5 years ago. However I have been suffering for the last couple of years with Proctitis. This flares up in the rectum (stump) and one specialist did say to me "why didn't they take it out at the same time, it would have stopped the proctitis" so might be worth the question?

    This Proctitis is a nightmare, I've been on mesalazine, and steriods, pretty high doses for the last year, 20mg plus of steriods. Although mebeverine to try and help. TBH, they may have masked it slighly but I wouldnt say have helped.

    Moved onto Infliximab in early December, had my 3rd infusion last Thursday so on this and 25mg of steriods reducing by 5mgs every 2 weeks and I'm as bad as ever! Trips to the toilet - high teens, urgency - very! Got another appoint with the specialist on Friday where I am pushing again to get the stoma back!

    I've come to terms with it and decided quality of life comes first. I can't do with the urgent trips to the toilet where as with the bag there is more control. I understand the stoma and bag are many peoples worst nightmare, but having experienced both I know what I'm drawn to...

    I have a young family 6, 3 yo boys, but I really can't go or do much with them unless there a toilet a few meters away. This is not the life I want. I was an outdoor person, out in the country, walking the dog, now my life is sitting in the house at weekends. Luckily I work from home, but its affecting my career. Was offered a position with a huge salary, but had lots of travel...dream job, and gutted that I had to turn it down. I wouldn't have done had I had the stoma as travel was fine.

    So my long winded reply is that it isn't all bad. I don't know how it affects you at the moment, but having been on both sides of the fence I know which side of the fence I'm heading for!

    Plus, the stuff and technolgy availble is much better than even a few years ago when I had it.

    I long for the day I get it back!

    DM me if you want any more information.

    Take care and best wishes,

    John

    • Darasdad1
      Darasdad1 JonWHut

      Posted

      John - Hi, I responded to the original post and am interested in your situation because I'll have to make a decision this year about to reconnect or not. It seems that when it goes wrong it can be dreadful.
    • JonWHut
      JonWHut Darasdad1

      Posted

      Hello Darasdad1,

      If I look at my situation then I was possibly a little niave the first time road as I was desperate to get rid of the bag and didn't ask enough questions.

      Mine was a straight re-connection ilo-rectal, but the Proctitis has reared its ugly head and making life almost unbearable. 

      Look at the options, and ask the questions!

      Know what I know now then I wouldn't have re-connected. even if I was given an other option of maybe an ilo-anal with a J-pouch. I struggle with the bag in my head first time round as it happened so quickly. But now my head is in a better place.

      I think accepting the bag is all in the mind!

      I also look at it in say 20 odd years time, fair enough they may have developed something, but when I'm an older chap, will I be able to rush and dash to the toilet like I can now, probably not so I feel that I'd probably end up with a stoma again at some point.

      For me its about quality of life - in essence I want a life back! apart from swimming, my stoma never stopped me doing anything. The situation now stops me from doing so much and has really affected my life way more than the stoma!

      So from me ask the questions and take time to think about it. Personally, knowing what I now know, if you can handle the stoma and bag, I'd stick with it, but your situtaion may be completely different and you may be find afterwards.

      Take care and all the best!

      John

    • johnc7524
      johnc7524 JonWHut

      Posted

      hi John thanks for your message, i can see that you have been through the wars, and that they have tried evry thing they could. in my circumstances i was going to be put on Infliximab but as you know they check you for all infections and unfortunately i was found to be HIV positive so I am not able to go onto any immune suppresion drugs hence the surgery route.

      i hope all gets good for you

      best wishes

      John

    • JonWHut
      JonWHut johnc7524

      Posted

      Likewise, whatever your decision I hope it works out!

      good luck and best wishes!

  • james_sull
    james_sull johnc7524

    Posted

    My condition isnt indeterminate as I am diagnosed with pan colitis however after taking mesalazine and various steriods pretty much none stop for two + years and going from flare to flare they wanted to put me on azathioprine however blood tests determined that I didnt produce sufficient enzymes to break it down which is dangerous.

    They were going to prescribe me with methotrexate but decided against it so Ive bypassed all immune suppresents.

    Now, my condition may not be as bad as yours but they put me on a drug called Vedolizumab about 4 months ago and im now in full remission, if it wasnt for the mesalazine I still take id forget I had an ibd.

    I think its poor that they're not considering a wide range of others treatments first unless there is another underlying reason.

    • johnc7524
      johnc7524 james_sull

      Posted

      Hi James, they had tried a variety of treatments but i appeared to respond to masalizine 4grams  and predinosole 40mg how i am not responding to them as well now and developing other issues, the underlying issue against immune suppressents is that I have been diagnosed with HIV whenthey were checking me to go onto infliximab so that shelved that plan, as i am still having constant flareups i feel this is the best route for me

      many thanks

      John

  • rachelle52846
    rachelle52846 johnc7524

    Posted

    Hi John

    I had my illestomy September 2015 I had UC for 11 years and had a real bad flare when I was 7 months pregnant had a baby boy in March 2015 all healthy then 6 months on I was still no better so i had the op also I had the choice of surgery I would like to point out this operation is not always done on emergency it's an option to give you your life back its your body you will have to make the fina descion along with the advice of your surgeon.

    I was a prisoner in my own home going up to 20 times per day it was the worst time of my life I was so scared about the op and wanted it as my last resort which is was I tried every diet ,drug u name it I've done it but nothing was working .. Yes it's scary but 4 months on I'm pretty much back to normal on how I feel ..the stoma is all in th mind it's my friend it saved my life I embrace this it's not a negative thing.

    The next op is the j pouch and like darasdad said its hard to decide but if I can get back without a bag for however long 10-20 years or forever then that's gotta be worth trying well for me it is I I don't do it I will never know but I appreciate the whole here we go again Sarga follow your instinct and your heart I wish you all the best and keep us posted good luck 👍😉

    • sheila91262
      sheila91262 rachelle52846

      Posted

      Hi All, ME again!!

      I have sympathy for you all as the disease is full of decisions, some of which are irreversable!. I can happiy say though that my son has absolutely no regrets about his ileostomy and then J pouch. Yes he is young and yes he was fit but the UC took most of his strength away and as you know he had an emergency ileostomy after perforating in hospital on Infliximab.

      Now 2 years later he is disease free, no pain at all, no drugs and an ordinary high calorie diet because of his sporting lifestyle. The key was finding John Radcliffe Oxford as they were able to diagnose him as UC not indeterminate and they were amazing at treating him as a human being and advising him about what was available to him. He made the choices and went for the J pouch surgery as he could and also he could go back if it didn't work. Initially he was not keen to have more surgery but he was told that he would need the stump removing anyway as it was producing symptoms and he was more likely to get cancer there, they adviced removal within 6 months, pouch or not.

      He feels he has a normal life again. He peppers the loo, as solids are not formed, 3 to 4 times a day and has control and can delay if required. His rectal muscle are good and he was given exercises to do pre op to make them better. The stoma was fine but he was selfconscious and it didnt help that he runs as part of his job and lifestyle. He had it for 18 months and at first was frustrated by its  activity in the shower for example but you learn to cope and compared to bleeding from his bottom and losing tons of weight and being anaemic etc it was ok.

      The male risk of the j pouch surgery was explained and its occurence is so low its possible to ignore, there are pills for that if it happens. He was 28 then and had no children but all was well, I was the nervous one.

      The j pouch formation and connection was fine, very little pain, short surgery and quick recovery.

      I think that reversal of ileostomy to a pouch is only if you have UC not Crohns, thats what we were told.

      My advice to all would be, find advice from medics who do it all the time, have surgery where they do it every day! talk to people who have had it done and take time to decide. I think the thing that made it a no brainer for my son was that he could go back to stoma if he wasn't happy. But he is!! there are no guarantees but what comes with a guarantee. He had  27 years with no ilness at all then the s*** hit the fan and this is his new norm. He is able to work and plan for the future and I am eternally grateful to everyone who helped him to get to this happy place.

      Remember all  look out for DVTs with Inflammatory Bowel Disease, more likely to happen esp after surgery, they should send you home with blood thinners.

      Sheila.

  • rachelle52846
    rachelle52846 johnc7524

    Posted

    John I had immune supressants along with steroids and pentasa nothing worked still do what you feel is best and like my last message it's hard to believe you will get your life back but you so will all those sleepless nights and feeling drained will be a thing of the past!!
    • johnc7524
      johnc7524 rachelle52846

      Posted

      Rachelle thanks for your supportive messge yes i am looking forward to the end of fatigue and depression and will keep you posted 

      many thanks

      John

  • Maryjo
    Maryjo johnc7524

    Posted

    Hi John...I had uc for 26 yrs and resisted surgery till I had to have it done Suffered usual flares ill health etc over the years . Anyway I had stricture of colon which left me no option. Took me a week getting my head round it . I then spent 8 weeks getting myself in the zone for surgery which I had last May and it has been the best thing ever I did for myself . Yes there is the inconvenience of the bag but having my health back more than makes up for it and being able to eat whatever I like. I think prob getting urself in the mind set and accepting the new u goes a long way on physically and mentally  how u do after. Positive thoughts go a long way to acceptance .I wish u well ! 😊 Mary Jo
    • johnc7524
      johnc7524 Maryjo

      Posted

      Hi Maryjo thankyou for the message, i have been dealing with the outcome in a positive way and intend not to let it pull me down, i will keep you posted best wishes John
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