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ileostomy reversal - should i go ahead?

Posted , 4 users are following.

brightside2016
brightside2016

Hi I am nearly 40 and have a stoma.....doc says I can have reversal if I wish next spring, trouble is I am not 100% sure, I thought I was more yes than know but since talking to two people who have had the reversal their experiences have pretty much put me off tbh....Please tell me some positives about going ahead with the op, otherwise I am likely to just stick with the stoma and I dont really want to! smile 

thanks for reading and I look forward to hearing about your experiences.

0 likes, 7 replies

7 Replies

  • rachelle52846
    rachelle52846 brightside2016

    Posted

    Hi Carly I have had mine for 5 weeks now and due a j pouch in 6-9months then reversal 3-6months there after I'm nervous and excited but it's going to be a long journey .. two of my friends have had the reversal and life is better as u probably know u will need to go about 6/7 times per day but the control is there it really is personal preference and do what makes your life happy and healthy good luck ..

    Rachelle X

  • brightside2016
    brightside2016

    Posted

    Hi Rachelle Thank you for your quick reply, I really hope everything goes well for you. I am glad you know a couple of people with good outcomes, I think at the end of the day if it goes well it just depends on quantities and what you eat!

    Carlyx

     

    • rachelle52846
      rachelle52846 brightside2016

      Posted

      Hi Carly no worries how u finding having a stoma ? How long u had yours ? I had ulcerative colitis for 11 years was fine then had a flare when I was 7 months into my pregnancy last Dec which continued for 9 months every day not good with my first baby was so hard lucky very he's a good boy I've been blessed I'm enjoying not running to the loo every 5 mins or having an accident but life is better but different X
  • sheila91262
    sheila91262 brightside2016

    Posted

    Hi, My son had a reversal in 2 stages, j pouch formed in Feb and connecting up in July. I have written loads on here under J pouch reversal. He had a reversal because he could, as he was definitely UC not Crohns and he wanted to try it even though there are no guarantees but the stoma can be reinstated if necc. He is 100% delighted and loves being back to "normal". He is swimming and going to the gym again and loving it.

    He goes to the toilet 3 times a day, not at all during the night now after starting off with 6 to 8 a day with 1 in the night. He has full control using his rectal muscles. We were wary at first,as we had read negative comments, but the j pouch has proven to be easy and everything he could have hoped for, long may it last.

    He went to John Radcliffe Hosp Oxford, under Prof Mortenson, the BEST! GOLD Standard.

    There is lots to be found on internet, including other types of pouch, also available at JR.

    We don't really know why he has worked out so well, he has healed and his body has adapted easily. He is young, 29, and fit and was only sick with UC for 3 months so few strong drugs affected him. He also had brilliant care and after care at JR. He does not eat carefully, he eats loads of whatever he fancies, especially spicey food with no repercussions!

    The stoma was fine and saved his life but this is better!

    Ask any questions you like, I found this forum very helpful for our "journey" and I'd be glad to help in any way.

    The main thing that I have to emphasise is that the surgery needs to be done by the experts, JR or St Marks London. After having the ileostomy in a general hosp it was clear to us that the reversal needed doing at the specialist hosp.

    Good luck

     

    • brightside2016
      brightside2016 sheila91262

      Posted

      hi Sheila

      thanks for all the information you gave me. I am willing to travel to find a good surgeon I am in suffolk so not too far from London. Can I ask if St Marks is an NHS hospital? do you think I can be referred there? So glad it worked out for your son. Carly

    • sheila91262
      sheila91262 brightside2016

      Posted

      Hi Carly, thanks for your kind words. St Marks is the main IBD hospital in the Uk and is NHS. Your doctor can most easily refer you. It is in Harrow.

      We would have gone there but oxford is easier for us and we had personal recomendation from a friend who had pouch surgery there 2 years ago and like us couldn't fault it. Also Prof Mortenson went to Oxford from St Marks to set up the team. He is brill and so personal, spends all day in surgery and finds time to visit the patient and relatives to tell them that all went well.

      The stay is not too long for the pouch formation, approx 6 days, and the take down about 4 days as usually key hole. My son had a couple of visits initially to check bloods and discuss process and types of pouch and a follow up after 3 months. He in theory can attend local hosp if needs anything in between. He is so grateful that things have gone so well, I'm so sure that the quality of surgery is a major part.

      Good luck, keep us informed.

       

  • rachelle52846
    rachelle52846 brightside2016

    Posted

    Hi Carly

    I had mine done at the University college London hospital by Dr Alastair Windsor who was recomended to me by my friends who both had the same operations. Worth doing your research and like Sheila said st marks are also very good !!

    X

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