Lonely 12 Year Old UC Sufferer

Meet “Helpless Mum”

Mother of 12 year old with Ulcerative Colitis. Has had since approximately 2 years old. Usually he is in good health with very occasional relapses and is very active.

Lonely 12 Year Old with Colitis

My 12 year old has just had a relapse and is tailing off his prednisolone,at times he has quite a bit of abdominal pain.Usually it is wind but takes time to pass.  Can anyone help with this any ideas, remedies. The doctors suggested a paed does of laxatives but very reluctant to give as he is not constipated and don’t want to irritate anything.  Have tried eliminating things from diet but symptoms remain same no matter what.  I feel so helpless watching him at times and I cant help other than hot water bottles and to rub his back or tummy.I feel I am hitting my head of a brick wall with my GP ,IBD nurse and consultant .Not only is it making him feel very down and the why me has started I feel very upset too as I feel I can’t do anything to help him.He knows of no other suffers his age and feels everyone is only interested in Crohn’s.  HELP me

He is a very picky eater but can have a good appetite when he feels like it.Other times a bird would eat more than him.He has grown up so far never knowing his life to be anything different and UC has always been apart of it.But when he asks why me and not my brothers what do I say ?He is a lot smaller than they were at his age and his little brother will soon over take him in height too .Will he catch up?

Again I feel so helpless what do I say.I research daily until my head hurts to try and find some answers.But most of the time I could just sit and cry I feel I have failed as a mother ,I am meant to protect my children but I brought him into this world he has my genes so it is my fault he is suffering this horrible horrible disease and I can’t do anything to make it go away .:(

written by Helpless Mum

submitted in the Parents Venting Area

14 Responses to “Lonely 12 Year Old UC Sufferer”

  1. JoeMarch 20, 2013 at 3:18 am #

    Look into the SCD diet. “Breaking the vicious cycle” by Elaine Gottschall. It has worked for me, except I don’t eat the dairy/yogurt (as all dairy makes me flare), and don’t eat nuts, as they have omega 6 which can induce flare-ups as well. The Paleo Diet is also good. Take a good probiotic each day, and try not to stress the young fellow out. I found prednisone and 6MP just made things worse. Doctors will only advocate drugs and surgery, so don’t ask them about diets. Stay strong, take care and good luck.

    • jackieMarch 23, 2013 at 3:02 am #

      Will go get the book today
      Thank you
      Jackie

  2. MattMarch 20, 2013 at 3:19 am #

    I’m so sorry. My heart goes out to you! I think about my kids getting this horrible disease and it makes me sick. I pray they don’t have my awful luck. I hope you find a great Dr for him, I’m sure they’re out there. God bless you, and its not your fault!

    • jackieMarch 23, 2013 at 3:01 am #

      Thank you x

  3. AndyMarch 20, 2013 at 6:58 am #

    I have a son as well, would hate to see him go through what I have been through.

    Supplement wise, try glutamine, Vitamin D and a strong probiotic(or ferment your own yogurt or kefir, I give my son kefir every day).

    I think it would be a good idea to look up doing fecal transplant from one of the healthy kids as well. That is likely to be the most effective, and low risk if the donor is your son.

    • jackieMarch 23, 2013 at 3:01 am #

      Will look into it
      Thank you
      Jackie

  4. Tom from Northampton
    TomMarch 20, 2013 at 7:56 am #

    Don’t blame yourself, only 10 to 25% of UC cases are caused by genetic factors so it is most likely not your fault. I can’t comment on diets however if he does have wind, getting him to lie in the fetal position on his left side will help. It helps me. the weight of the intestines put pressure on the left side of the colon making it easier for the wind to “escape”

    • jackieMarch 23, 2013 at 2:59 am #

      Thank you
      Jackie

  5. MaggieMarch 20, 2013 at 2:06 pm #

    Please eliminate gluten from his diet if nothing else. It causes gas and can stunt a child’s growth, it sounds like he is gluten intolerant or has celiac disease. The gluten prevents nutrients from being absorbed in the small intestines. There is really good advice here from a lot of UC sufferers. I hope your son finds some relief soon.

    • jackieMarch 23, 2013 at 3:00 am #

      Will give it a try
      Thank you
      Jackie

  6. Senga TaylorMarch 20, 2013 at 4:59 pm #

    Hi ‘my name is Senga and I often feel guilty and I am worried sick about my daughter and her symptoms are no way close to being as bad as your sons. She has bleeding, cramps, lots of mucus and joint pain. In the past she has had other symptoms but I did not realize she was having colitis type problems. I have a sister and a brother with Crohns/UC…that’s how they describe what they have. My sister and brother both are very sick people and I am terrified that this is my daughters future. She is only 13 :( I have the Fecal Transplant kit waiting as I think we are going to go that route for her. She is keen to do it as she wants to be “normal”. We would use her younger sister as a donor. I haven’t done it yet mainly due to time constraints and Olivia is feeling well at the moment. I keep an eye on her diet and she is fairly good. She doesn’t eat nuts, candy, lollies, or fast foods.We try to eat a healthy diet. All her foods are well cooked and I kind of follow the SCD. I also make yoghurt and she eats it every day. I give her VSL#3, a good quality multi vitamin, and Astaxanthin. I have bought Glucosamine, but I haven’t given it to her yet as she doesn’t want anymore pills. I worry about her future health as I see the suffering my brother and sister endure. I can relate to you completely. Olivia has a friend who has celiac disease so she has a controlled diet too so that helps. What can I say only thank you for writing and to tell you that your story has helped me to hear that others feel as guilty and concerned as me. All the very best!! Senga

    • jackieMarch 23, 2013 at 2:59 am #

      Senga
      Thank you and good luck to you too x
      Jackie

  7. bevMarch 21, 2013 at 8:40 am #

    So sorry about your dear son.

    If you don’t mind my asking….was he on any antibiotics or other medications when he was an infant or very young?

    I am always trying to get to the bottom of why we get UC, especially young children.

    Thank you, and welcome to the site.

    Bev

    • jackieMarch 23, 2013 at 2:57 am #

      Hi Bev
      The only thing I can think of he had croup 11 times in 9 months just before this all started.He was given oral steroids most times if not every time this happened.
      Jackie

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