My panproctocolectomy

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I have had colitis for a while now and now have to have a operation on 6th Feb and was just looking for some support as I'm finding it hard comming to terms of having bag

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  • Posted

    Hi I Had the same op 22nd May last year after being steriod dependant 30mg daily lots of support from surgeon and stoma nurses. The first few days in hospital are difficult but much easier once home and having to do bag changes etc yourself was surprised at how tried I was/am but will have to live with that. Can eat what I want still don't drink alcohol but by personnel choice not having to plan outings around toilets so much more freedom. Yes I did have bad days but it is a major op and classed as major trauma to the body so allow lots of recovery time sorry if rambling but so much I could say but yes glad I had the op

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  • Posted

    Hi Ian - although I’m not familiar with a Panproctocolectomy I’ve had the same operation but in 2 parts with a 16 month gap. Each operation was 5 hours and is major surgery. Is there a reason they’re removing everything at the same time as often the Rectal Stump is left to give the option of a J Pouch. I found the surgery both physically and psycologically difficult at the time but having struggled with UC for 5 years with debilitating Flares and dealing with the effects of numerous drugs I am in great shape now, drug and UC free and am an advocate of surgery as a cure for severe UC. Good luck.
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    • Posted

      Hi Rachelle - doing well. Like you I’m active, busy and back to normal albeit with some Giblets missing and a Stoma. You’re absolutely right (IMHO) about all the benefits of surgery. It’s an uplifting and positive story about the addition to your family. I’m so sorry to hear about the diagnosis of Breast Cancer. Hopefully you’ll be able to combat it with the same resilience and outcome. Xx
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    • Posted

      Hi Darasdad1 

      So pleased you are doing well life seems a lot better for us both.

      It’s a strange one as uc causes so much pain and breast cancer I have none so scary ..still it’s early stages so that’s a plus point just got to do the whole chemo/ surgery/possible radiotherapy so just trying to get my head round that I feel fine but chemo is probably going to make me feel a bit rubbish anyway main thing is to beat this!!

      Take care and keep in touch 🙂

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  • Posted

    HI ian30322

    I had surgery on 7th Feb 2017. I wrote about it on this site afterwards. I had large bowel removed except for about 15cm which they call a rectal stump. I have a Stoma. I’m still getting bleeding from the rectal stump so I have decided to have that removed. My Stoma will then be permanent. You need to discuss whether You have any options to have the bag reversed if you’re not sure. I put off surgery for 3 & half years. No meds worked, it was controlling my life  & I was quite unwell. I Really didn’t want surgery Because I was the one who had to make the decision. I’m glad it was done so I can get on with my life. Have you seen a Stoma nurse? Any questions you have just ask on this site as well. 

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  • Posted

    Hi Ian30322

    It’s such a huge decision to make I too had uc flared for 9 months while carrying my baby Boy and after. 

    I ended up with an illestomy September 2015it changed my life and got it back!

     I have no regrets since then I fell pregnant again had a baby girl (tinker ) I call my stoma coped so well throughout and after. I’m was due for j pouch this Feb however just got diagnosed with breast cancer 😔so need to beat this before I can move forward but one thing  I promise you things will be so much better than living with uc..

    I can swim /run live a normal life and busy and with hubby and two young children I’ve been fine!! It’s hard at first to get you head round it but once you except this is part of you everything else will come more at ease, if you want to ask anything else please do always happy to offer advice this forum has really helped me throughout good luck with your op keep us posted ..I wish you all the best and give your stoma a name as it’s your friend !! 

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    • Posted

      Thank you Rachelle it's a big thing I was given an option of not having the full ok without the bag but there is always the chance of it getting worse I was not keen on the idea of having bag ,but I think it's go for the best thanks for replying I will keep you posted .

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