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Hirschsprung's bowel disease

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Guest
Guest

My 16 month old son has hirschbrungs bowel disease. when he was born he was violently sick and would not take his milk.he was transferred to yorkhill sick kids in glasgow where he had a slide biopsy to remove some of the bad bowel. he was in yorhill for 8 weeks when he was born sad .

He is now an outpatient at yorkhill and has regular check ups every month. Lately he has been on his hands and knees screaming in agony as he is severally constipated he is having suppositries inserted into his back passage every day as well as movical orally.In the past week he has had no appetite as his tummy is so bloated and sore as he has not done the toilet in over a week. On monday he is going to stay in yorkhill as he is going into theatre tuesday morning to widen his back passage and empty his bowels. As a parent this is the worst thing I have had to deal with emotionally , (my sons illnesss) as my son cant have a normal happy day his day is filled with pain that I can not soothe its very upsetting for us all.Fingers crossed he does well in surgery and recovers fast and can live in comfort. I just hope he can have a normal happy life like his 3 yr old brother ryan.

1 like, 3 replies

3 Replies

  • simon_knight
    simon_knight

    Posted

    Hi,

    I just read your post and I hope your son is now well.

    I was born with Hirschsprung's back in 1974 (now 38) and was treated at Great Ormond Street.

    If it does give you any peace of mind / comfort, I am now able to live a completely normal life and have been free of problems since I was about 6/7.

    Take care.

    Simon

  • appu
    appu

    Posted

    Hi,

    My son also a HD patient and was diagnosed on his first day of life. And of course his condition was really

    bad. After al lthe test and barium x-ray ,it was confirmed that his whole large intestine was having this condition. And on the 3rd day his surgery had done by removing large intestine.Then for almost 4years we had a horrible period. Now he is 14 years and studying 8 class. Now life is almost normal.

    My son's large segment of intestine was effected .I think i your case was not much bad .So be hopeful and no need to worry,

    And in our doctor's word, his development was unexpected and unbelievable .all the best and

    bye.

    amma

  • Guest
    Guest Guest

    Posted

    My daughter is 21 years old she got her first colostomy at 3 weeks old she got her permamanet colostomy and fistula at 4 years old (due to been born with a server case of Hirschsprungs disease)  Many many surgeries and most 6 years of her life in ICU. let me try to get tom my question to keep this post from been to long. My daughter has basically isolated herself due to her condiotins with weight/humped over back and host of health issues.  Very long story but she now will NOT go to a doctor no matter what! She has been having watery dirreah from her colostomy for MONTHS straigh and bleeding from stoma and also bleeding from fistual which drains infection like Ecoli should she get it. But we cannot stop the water dirreah or the bleeding from stoma and fistuala I canNOT get her to go to doctor and I buy everything I can OTC to help but this problem will not go away the fistuala drains blood blood clots and such . Stoma has blood mixed in  bowls and plus bleeds. She has lost tons of weight from been so sick Im her mother and at my wits end I'm so scared she will start to hemmorrage and not be ale to get her to doctor in time.  I called the hosiptal and they said if she is in her right mind which she is then theres nothing I can do. Please can someone tellm me what this can be what can I do to help her. The OTC stuff is not working!  This been going on for months! She is already an anemic I cant even get her to take a daily vitamin I bought her probotics.What can cause this bleeding from colostomy stoma and fistual stoma I'm really scare for her! What more can I do? Her father passed away Jan 16th 2015 from ALS and she even before that just 95% of the time stays in her room on pc/xbox one and nline chats with cyber friends. She will not leave house to go anwhere rearely! But the main issue now is what is causing the non stop water dirreah and bleeding from stoma and fistula for months. Please someone reply as soon as possible. Thanks, a very worried mom

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