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Advice on reversal op

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caroline55095
caroline55095

My 15 yr old son was diagnosed with uc in November 2017 after having bloody stools for a few months and losing 2stone  , he became very ill and was hospitalised for 3 months which during that time had to have an emergency ileostomy .

He now has a stoma and seems to be coping well considering this all happened so quickly but we recently went for a hospital appointment to discuss the reversal op and was told that he will have a “pouch” inside but this will not last forever and he will eventually have to have the stoma again for life, we have never been told this b4 and now it’s a major set back for him because the reversal op was all that was keeping him going I’m waiting for another appointment to discuss it further but would really like to know if anyone has any info on this that I can pass on to my son because he’s very stressed out at the thought of possibly having the stoma for life . Thank you 

0 likes, 7 replies

7 Replies

  • Fluffe
    Fluffe caroline55095

    Posted

    Oh Caroline... I am so sorry that your son has had to go through this and how stressful it is for him, particularly at his young age.  While I am not in that situation and do not have the J pouch (though there will be others who may be able to help you with that), if you are in the UK, it may be helpful to check to Crohns and Colitis website.  There is a helpline that may help with emotional support and possibly the pouch etc where they can possibly help there too and if he's open to it, they may be able to possibly help him meet others that are his age and who are in a similar situation as that may really help him as there are groups all over....  I think it's that feeling of 'isolation' that is the worst and which I felt when I was first diagnosed (and that looming - what the future holds)....

    I wish him the very very best......

    • caroline55095
      caroline55095 Fluffe

      Posted

      Thank you for the advice I will definitely be looking at the website , my son is very shy and embarrassed about the situation and finds it difficult to talk to anyone about it and in his own words he just wants to forget about it all and it be over so it was definitely heartbreaking to hear that the reversal op might not be what we thought but il try to keep him positive until we know all the facts .

      All the best to u too x 

    • Fluffe
      Fluffe caroline55095

      Posted

      I can understand totally him not wanting to talk about it and being shy.  Been there done that and still sometimes doing it.  I'll be thinking of him...

      Take care xx

  • bustergut1
    bustergut1 caroline55095

    Posted

    Dear caroline55095,

    What a terrible time your son has had & how awful for you at the speed this has all happened. This disease is a strange one with some people staying on meds for years & others needing surgery almost immediately. For anyone this can be a difficult thing to accept. In answer to your question I have not heard either way of a j pouch not being permanent but perhaps it depends upon the ‘life span’  of the pouch or the individual severity of his condition. I decided on a different route to recovery. I had my first op to remove majority of large bowel & have a Stoma in Feb 2017. My second op to remove the remaining bowel, the lovely named rectal stump, was 2 weeks ago, 13th March, I’m currently laying sideways on the sofa as pain in the butt! Lol My Stoma is now permanent. My strong advice would be to contact Crohn’s colitis uk website with phone call or leave email message. Young people can become members for free.  You will receive help, advice & support. You son & you will know he is not alone & not the only one to go through this, especially people of his age.  Other people on This forum have posted they have  j pouch with success.  I opted not to have j pouch but everyone has to decide if suitable for the them.  Please keep in touch, we all care about each other on this forum. B x

    • caroline55095
      caroline55095 bustergut1

      Posted

      Thanks for your advise I’m going to contact the colitis website and try to find  out all the facts before my son gets totally stressed out . This forum has already opened my eyes to alot that we didn’t know as we are very new to this and still learning.

      I wish you all the best in your recovery thanks again caroline x  

  • jeff07718
    jeff07718 caroline55095

    Posted

    Hi Caroline, haven't been on here for a while so missed your post.

    My son has had a superb experience with the j pouch and is still going strong with it after 3 1/2 years. I have written all the details about where and when and how etc under Sheila 91262 but couldn't remember my password so started again as my husband! He has not been told anything about a lifespan of pouch and has high hopes of a lifetime. He was 28 so pretty young with stoma after having savage UC and almost straight to emergency illeostomy after perforating. He waited a year for reversal and was so glad to get rid of mucous fistula and start the process. We researched and went to John Radcliffe Hosp Oxford under Prof Mortenson, best GI surgeon and partly responsible for the breakthroughs in J pouch surgery. Formerly at St Mark's London. Brill team, before and after. Surgery was fine, not too painful or scary, he drove home after 2nd op! 

    He was unfortunate to have a DVT after the illeostomy so had to have careful anti coagulants after reversal but no probs.

    To summarise, he loves the new normal, no drugs, no pain and no stoma, eats everything and sits down to poo. Having his anus in tact is good too, makes him feel same as before the UC. He started with approx 6 to 8 toilet goes at first to 4 after approx 6 months and now 1  or 2 a day, none at night. It is pretty loose as lots of water in it as colon missing, some take a thickener but he doesn't need it. He can delay and hold it for a while if on a train or can't find a loo. He runs and plays sport with no probs. Scars are small and healed well, second surgery is keyhole. 

    Any questions just ask, son has no idea I talk about his bum.

    Sheila.

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