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J pouch surgery advice

Posted , 9 users are following.

sheila91262
sheila91262

Have you had a successful reversal of ileostomy and now have a j pouch? I would love to hear how you are getting on and any tips. confused

 

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  • rebecca40246
    rebecca40246 sheila91262

    Posted

    hi shelia i hope im not to late to join your discussion , my son had his J pouch surgery in march 2014 , after spending 2 years with an ileostomy due to the side effect of toxic mega colon from ulcerative coltis , to be honest i was looking for help myself on this forum because since the J pouch surgery it is like he has reverted back to the original ulcerative coltis symptoms , the consultants from the childrens hospital has suggested possible crohns disease , after an endoscopy , the QE has reviewed all his tissue samples and stated that its not crohns its UC  still ? he has a macro perianal fistula and ulcer, erythema and ulcerations throughout ;neorectum; small bowel, 30cm from anus, micro with severe active inflammation , granulomata, possible pouchitis, his got tracts below the sphincters, he has persistent diarrhoea and abdominal pain since the J pouch and now and again sickness, when he stands up he instantly needs the toilet , he has not been able to go out for over 1 year , in 2012 he some how developed a condition called acute generalised exanthematous pustulosis / red man syndrome so most antibotics he cant have , his infliximab was stopped 2 weeks ago because of active infection , his azathioprine was stopped due to a previous neutropenic episode in 2011, the antibotic he can have they wont prescribe , and i dont no what to do , is there anything that you had done that improved your outcome i would be willing to try anything at the moment , his own gp will not even see him and tells him he has to see his consultant , i just think there must be something i can do to help him , like diet/ medications / herbal / anything , any help anyone can offer i would be so grateful , 
    • sheila91262
      sheila91262 rebecca40246

      Posted

      I am so sorry to hear of your son's medical complications, it is so cruel that he has so much to deal with.

      My son had UC for only a short time and the meds were only able to contain the worst symptoms and he was on his last hope of recovery with Infliximab when he perforated in 2 places and had emergency ileostomy, stoma and mucous fistula formed. You son's medical problems are too complicated for me to understand, were they fully recognised when he had the pouch surgery?  My son was at first diagnosed as indeterminate for UC or Crohns but the good guys at John Radcliffe Oxford were able to be 100% from his results that it was UC so went ahead after about a year after the first op, in Feb15.

      The hospitals, St Marks London and John Radcliffe Oxford are the top in the country for IBD and not only treat but undergo all sorts of reconstruction surgery after cancer etc. We cannot fault JR and I know many people who would recommend St Marks. If you asked a GP who had IBD where they would go it would be to one of them.

      That is all that I can help you with I'm sorry, we had poor experience which lead to our complaining to the Ombudsman,after treatment at the local hosp who were not really able to cope with the level of disease my son had. In hindsite I wish we had been referred to the other hospitals as soon as he was diagnosed.

      Is QE the one in Birmingham? it has a good reputation but are not necc specialist in IBD.

      JR in Oxford told my son that they have no patients who had pouchitis that wasnt completely cured and very low incidence of it anyway. The only thing that we thought he might need was a diet thickening additive which would help him to have more solid output, available on prescription, but so far he hasnt needed it.

      He went ahead with the pouch surgery because he was told that the worst case scenario was that if it didnt work for him he could always go back to the stoma.

      Have you asked for second opinions? A referral to any other hosp is easily done via your GP.

      Good luck to you both, Sheila

       

  • cmcgee1234
    cmcgee1234 sheila91262

    Posted

    Hi Sheila, i have had a very successful reversal operation of a ileostomy and i now live with a j pouch. The operations changed my life. i am one of the many luckey people who have had the operations with minimal complications. After the first surgery it was a bit dwanting but i soon adapted and i was taken off all medication it was amazing! i felt normal again and was finally living a life with out pain. 

    xxx

    • sheila91262
      sheila91262 cmcgee1234

      Posted

      Glad to hear you are doing so well, thanks so much for the reply.

      I was feeling optimistic but also worried about what might go wrong and fearing that it wouldn't be as good as anticipated.

      My son is now 2 months on from the keyhole surgery and we can safely say that the results are brilliant!! He has no pain, no drugs, no sideeffects of drugs and no diet restrictions. He has just visited for a meal and has eaten the contents of the fridge! He is back upto a normal weight and has changed his lifestyle to include the gym and swimming again.

      He says he has gone from average of 6 ablutions a day, post surgery to 4 times a day, which he is happy with. He usually goes once in the night, partly because he eats alot as he is so sporty. He is hoping that as he continues to expand his j pouch he will reduce the number of times he is up at night from 1 to 0. Better than when he had a bag as he used to set an alarm to check he hadnt leaked.

      The fact that he was able to have this FINAL! operation and live a normal life again is amazing and we are all so grateful that we found the right people and place to go forward! Compared to living with that horrid disease it's nothing short of miraculous.

      Good luck to all.biggrin

       

    • sheila91262
      sheila91262 cmcgee1234

      Posted

      Hi All

            quick update, son doing very well, average of 3 visits a day and nothing at night. He is happy to be swimming and going to the gym several times a week. He has had a holiday abroad recently and coped well with his initial self consciousness due to his large scar, there are worse things.

            As he was unfortunate to have a post surgery DVT after being sent home from hospital without blood thinners he has developed Post Thrombotic Syndrome. He wears a compression stocking and was on Warfarin but now off. We were lucky enough to find treatment for this at St Thomas' Hospital in London and he will have 3 stents fitted in his major leg vein to increase blood flow. Such a long and difficult journey but now further proof that the NHS can come up with the goods. I am full of optimism.

              I do feel that there is alot of information and communication gaps out there and requires us to do so much research ourselves. Why don't the medical people share info more? This PTS info is not online unless you know where to look. Even GPs and hospitals don't know about it. Still need for improvement.

      Sheila.

  • Ricky-
    Ricky- sheila91262

    Posted

    Sheila, I joined this site so I could reply to you. If your UC is under control, and you get scopes done( and they are clear ), I would not advise someone to get a J pouch or ileostomy, fi they don't have to. What I am trying to say, is most medical professionals don't fully explain complications and long term problems, and push a J pouch. Also, a hospital that boasts a 91% success rate, their patient Quality of Life Survey, only 77% said they had a good quality of life( true success ). So if your only going a few times a day....I say "If", and if at worst you go say 8-10 max....Really... I know "If" that is the case, it sounds harsh when your are in the momment, but don't be a prisoner of the momment with any decison. "If" those numbers fit you....and your scopes are good( besides your known alignment...Uc? Then I would hold off. All the new medications being launched. Also, the next 3-4 years....across the board new meds are coming out, even for hairloss( in clinical trials with positive feedback ). I am saying...I would enjoy what you have " If " all that applies to you, if less...better. I say all this for a reason...

    Having an ileostomy, your odds of any adverse effects related to illness are rare. Unlike Jpouch, see pouchitis, see complications. However, an ileostomy has a vey very bad complication.....and most medical staff will not tell you...it's a hernia. This is not to be confused with an inguinal hernia( most hernias are of this nature, a lot of males get them...27% and some athletes ), but these are not simple to get rid of....do a search, do not click on images. These are called peristomal hernias. Half that have surgery, will need another as they reoccur. Peri meaning around, and the stoma. 

    So all in all, not a scar post but meant to be informative. In reality, that is why. Also for hernias, they just are now getting those lack luster results...10 years ago, it was way worse( it's improving maybe every 5 years ). So with that said, many reasons..."If" you are doing ok, I would hold off. 

    • sheila91262
      sheila91262 Ricky-

      Posted

      Hi Ricky, thanks for the post. My son had emergency ileostomy and so no choice as perforated in 2 places. He was young and went straight to severe UC and not responding well enough to meds to survive. Not having surgery was no option. He was ok with stoma but as very sporty, thats how he earns a living, so he was happy to go for a j pouch reversal. He is lucky and he has adapted so well that he has no regrets. i am sure it does not work for everyone but it has for him. It has been a year and all is good. He has met others who are doing well too. good luck. Sheila. 
    • scott42860
      scott42860 sheila91262

      Posted

      Hi

      I'm glad to hear your son is doing so well.

      I'm thinking of having this surgery done at st marks in London next year.

      Where did your son have his surgery done I'm trying to find the best surgeon I'm under mr Jenkins at st marks.

      Regards

    • sheila91262
      sheila91262 scott42860

      Posted

      Hi Scott. I am still writing on here as my son had such a terrible time with UC that i was looking for advice and positive outcomes. We didn't get much feedback then but more so afterwards. He went to Prof Mortensen in John Radcliffe Oxford as we had a friend who's Mum was given a J pouch there and was still doing very well several years later. Also from researching we found that St Marks and JRO are the places to go for surgery. Prof Mortensen went to JRO from St Marks to lead their GI surgery team some years ago. I would say that you are in the right place. Our experience at JRO was great as they answered all question very positively. They told him about the male risks, all good, hope to be a Grandma one day, and his expectations from the pouch. He has healed so well he has no problems and leads a normal and very active life. He had 2 short stays in hosp and was able to walk about straight afterwards and even drive after 2nd op as key hole. Good luck to you. Ask any questions you like. Sheila.

    • scott42860
      scott42860 sheila91262

      Posted

      Hi Sheila

      Thanks for your reply

      How long did your son Take to recover from the operations and get back to work?

    • sheila91262
      sheila91262 scott42860

      Posted

      Hi Scott, It was only back in Feb 15 and Jul 15 but seems years ago. He was in for 6 days for first op to make pouch and remove mucous fistula and last bit of colon. He retained his rectal muscles for controlling his output and was given exercises to do so that he could feel when he needed to empty and control it. Getting rid of his active and annoying mucous fistula was brilliant. He was off work for about a week and was less active for awhile so as not to damage scar. No pain or problems really. The 2nd op was about 3 months later as the pouch has to be water tight and fully healed. They operated as a key hole procedure through stoma to attach the end of small intestine to pouch, only in for 3 days. Do check they will take all of large bowel to remove all disease, have heard of some who have retained last bit and still get some disease symptoms. My son uses loo in normal way so don't know why some surgery is different. There are several forms of pouch and they will advice which one is most suitable for you. His recovery from second surgery was even quicker and his toilet useage was active before he left hospital. He has got control through muscles and tends to empty when he goes for a wee so he empties about 4 times a day. He had been waking at night to empty bag so was grateful to sleep all night again.

      I have read about people being less successful and having leaks etc. My son wanted to give it a go as even if not successful could go back to stoma and would need another surgery to remove last bit of colon as prone to cancer if retained. He has his original emergency ileostomy scar on his abdomen but otherwise you wouldn't know he had all this re plumbing, lots of tiny scars faded to nothing and the mucous fistula scar was absorbed into the big one and neatened up.  I wish you the best of luck. Sheila

  • sheila91262
    sheila91262

    Posted

    Hi All, Hope you are well. Just a catch up on my son's post j pouch. I like to keep in touch with people as I was so keen to find out about the details and outcomes before he had his operation. So now nearly 2 and a half years later he is doing exceptionally well and still has no regrets. He is down to 2 to 3 toilets a day and no accidents. No night time toilet needs. He is active and sporty and very fit. He still has no UC symptoms. I wish anyone who has to make this decision well. Sheila. 

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