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Will stoma bag get me back on my feet?

Posted , 7 users are following.

samantha1982
samantha1982

Medication just doesn't work for me and this is my 2nd flare up I've had in 6mths last year I had proctitus now this week been diagnosed with colitis on left side I'm not fussed with going to the toilet a lot blood etc the only thing I can handle is the crippling pain in assuming from infection or and the ulcers and the only thing that calms it all down is steroids this being 2 Nd time round in 2'yhs can't live off them for ver and every time I come off them 2-3 weeks pain comes back flare up returns with avangence that's why I'm hospital for a week now for the first time.

I live in my own with 2 kids under 6 and 2 young dogs I need to be able to walk drive sleep eat chores tend to everyone in house etc and I was wondering if I have the colon removed will infections and cramps and pain be a thing of the past and can I get back I normal and crack on with my motherly duties whatvarebthe benefits of having it done ?

0 likes, 6 replies

6 Replies

  • Darasdad1
    Darasdad1 samantha1982

    Posted

    Samantha - I was diagnosed with UC 3 years ago and had managed to cope with a variety of medication until June this year when I was prescribed a course of Steroids for a major flare up. They worked to a degree but in September I had another flare up that Steroids had no impact on. Things just got worse and after an infusion of Infliximab also had no effect and my situation worsened I had my colon removed. It is a major operation and 4 weeks later I'm still recovering. It is a slow process but I feel stronger everyday and the dark days when the UC controlled my life appear to be over. Having a Stoma bag is no big deal for me and I find it easy to manage but it is a very personal thing. If you are considering an operation you should talk to a surgeon who will explain what the operation involves before taking a decision. Take care and good luck with whatever treatment you have.
  • rachelle52846
    rachelle52846 samantha1982

    Posted

    Hi Samatha

    I had proctitius and UC for 11 years had a flare Dec 2014 which went on every single day till sept 2015 I was also 7 months pregnant when the flare started going 10-20 times per day and losing so much blood I ended up having my colon removed and have a stoma aka bag now life is so much better and will have more ops to go due to the j pouch and reversal.. Recovery for me was easier than my c section it does take time to heal and adapt but you will have your life back and so much more energy so for me my nightmare has ended its such a big descion to make but I have no regrets it took me about 4/6 weeks before I lifted my 8 month old son you just have to take it easy well as much as u can with your little ones.. Do your homework on surgeons and if you have any questions please let me know good luck X

  • rachelle52846
    rachelle52846 samantha1982

    Posted

    You will definitely get your life back for sure the thought is more scary than reality suppose it's the not knowing was so hard I was petrified and reason why I held out for so long before having it done which maybe I should of had it done earlier steroids didn't work for me and other medications no joy I was tired of being on the hamster wheel of drugs and now yes I have a bag and u will have ups and downs but in the grand scheme of things I am finally able to enjoy my family how it should be being a new parent X
  • sheila91262
    sheila91262 samantha1982

    Posted

    Hi Samantha, I'm sorry for your pain. My son had UC and had his colon removed and a stoma formed. He has had the reversal and J pouch and is delighted with the results. Please see my postings under J pouch and UC on here.

    He is pain and drug free, back to a healthy weight, muscles rebuilt and plays sport all the time, swims and goes to the gym every week. Something he could only have dreamt about two years ago. It is said by the docs that 1/3 go straight to surgery by the severity of the disease, as he did. And another 1/3 eventually go to surgery as the drugs fail them. So don't feel that you are giving in.

    All the contributors on here who have discussed this have said it was a good decision.

    My son had the reversal after 1 year and it has worked very well and he is fully controlled and goes to the loo 3 to 4 times a day, nothing at night.

    He says he has his life and his health back and he looks great again.

    He went to John Radcliffe Oxford, NHS Hosp as they do the surgery all the time and the aftercare and nursing were brilliant.

    Take care.

    Sheila

     

  • looloo43
    looloo43 samantha1982

    Posted

    Dear Samantha, it must be so hard for you with children & dogs to look after as well as yourself. I only have a hubby to look after, & my colitis is largely under control. In the past my gastroenterologist mentioned he was going to try me on 6-mercaptopurine (an immunosuppressant) as a last resort but i didnt need it in the end as other conditions were diagnosed as well as colitis. but, i looked into 6-mp & it sounded quite a successful treatment for many colitis sufferers. i also knew a lady that was on it & prior to her going on it she had lost a lot of weight & was unable to work, now she leads a full life, works, goes on hol, & has regained her normal weight since going on this drug. before you take the plunge of colostomy, it might be worth suggesting this drug to your gastroenterologist. it is apparently one of the newer immunosuppressants, that is more tolerable to patients, but everyone is different. might be worth a try. hope this helps. take care x
    • samantha1982
      samantha1982 looloo43

      Posted

      They were on about new stronger steroid and anti immune thing I'm on normal iv steroid doesn't do anything but make my heart and chest heavy and i can't dose off or sleep cause i keep jumping awake as if someone's touching me.

      I'm on a ward eith 80yr old patients puking delirious pooping all Infront of me they don't sleep during the night it's freaking me out cause there all looking like there on there last legs apparently I'm on gastro ward wish I never asked to be moved the smell is unreal I feel like crap nothing's working serious under staffed which doesn't ease the anxiety i can't stay hear over weekend it will be 10tens worse

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