My Teen Daughter Is Suffering

worried UK mumIntroduction:

I have a nearly 16 yr old with UC. She was diagnosed at 8 yrs old. She is facing surgery.

Our Story:

Hi, i am writing about my teenage daughter who suffers badly from UC.

She was recently admitted to hospital again for 5 days this time to be put on fluid and steroid drips. Shes come home better but is now facing the deciision whether to have her full large bowel removed. Shes just had enough of the constant flare ups, tablets and missing school. It looks like she will nor be able to sit some exams in may because of her constant absences from school.

As a mother i am worried about the length of time shes been taking prednisolone which is now back up to 40mg.

She also takes Azathioprine, pentasa and omeprazole. I am at the end of my tether with all the worry. My daughter has confidence issues which i put down to her condition she doesnt have any friends at school or away from school this breaks my heart as she is the strongest mose beautiful person inside and out but shes putting weight on due to the steroids and is so self concious about it. I wondered if anybody else out there can give any advice for my daughter as she is looking at having a stoma. We had never heard of a stoma before until 4 days ago so we have had a lot of reading to do but think we are up to speed with the procedure but my daughter is a bit worried about the actual stoma not so much about the surgery or bag side of things. This is a hugh decision for anybody let alone a nearly 16 year old. I am trying my best to help her make an informed and the best decision for her but it is hard to step back and let her decide for herself.

Any experiences, advise or opinions would be much appreciated :)

written by Emma

11 thoughts on “My Teen Daughter Is Suffering”

  1. Worried Mum. Please try not to worry. She’s young enough and strong enough that she may be eligible for j-pouch surgery. That’s where they take a section of her small intestine and make it a sort of digestive pouch out of it. She’ll still have the stoma for a short amount of time. The stoma itself isn’t so bad. Just be prepared for possible leaks. I’m not saying this to scare you, but we weren’t prepared and ours happened at home. In the beginning, it will make noises and that’s to be expected. Sometimes it will fill with air. She will feel free because she won’t be running to the bathroom all of the time. Also, the meds will stop. The only med she may still take is the lomotil to slow down the colon. Or just drink Metamucil. I hope this helps. Please read up on the surgery before you have it. It will change her life. She will feel a freedom that I’m sure she’s forgotten.

    1. Dear Emma

      I have jut read your post and I feel for you as my 7 year old daughter was diagnosed with UC – pancolitis in October 2013. I literally felt my world had ended at the point where the DR said my daughter who went in for a check up came out with a chronic condition, Having very little support and advice from the hospital and no knowledge of UC, I took it upon myself to research and find alternative therapies to help my daughter.
      One of which was to look at diet and read Adams book, It hasn’t been easy, lots of tears along the way when my daughter ended up in A&E on her 8th birthday this Feb, due to an allergic reaction to AZA, she then had a bacterial infection because she had a few chips from the chip shop, ended up in hospital again in March for 5 days – she was on Morphine, Steroids and Antibiotics. I was non the wiser when I came out of hospital, she had been on a wheat free and Gluten free diet since Feb, Taking her meds.
      When I left in March the DR said the prognosis for my daughter was Surgery following the next colonospy and endoscopy to be booked in May as the DR stated they want to conduct an endoscopy in case the inflammation had spread, you can imagine my despair and desperation.
      I was adamant to help my daughter fight this and not let it beat us and heal her colon naturally as possible
      I then got a call from an aunty who told me about a Dr who was on a Sky channel discussing IBD, I decided to give her a ring. I went to see her with my daughter and she treated my daughter as an individual didn’t mention genetics etc, she conducted an NES scan which was truly amazing, she said she will be treating the root cause of the disease which will be like peeling an onion. I followed her advise and continue to give the conventional meds as well as the homoeopathic treatments, until I saw her again on the follow up on 17th April, where she conducted a further NES scan which had shown that levels of in toxins in my daughters body had reduced. i also told her that my daughters colonscopy and endoscopy is booked for the 1st May and she was determined to prove that my daughter was healing, she at that point gave me a bottle of SERRA Enzymes taking alongside the conventional meds, and what she prescribed.
      My daughter had the tests conducted yesterday and the endoscopy showed it was Normal so inflammation which was a huge relief and had not spread and the biggest achievement was that the colon has healed. I have the before and after photos from Oct 13 and the May 14 and the colon is no longer blistered, sore, Mucous, black spots, the report says it all and my DR is very ANTI DIET and ANTI- Natural therapy and assumed it was the Meds he prescribed and I think he secretly didn’t know how.
      I always remember this “when DRS say that surgery or Drugs with horrendous side effect are the only option, would that be the only option for them or their child???

      I don’t believe that Steroids and the Salofalk granules have healed my daughter alone because they didn’t for the first 4 months.
      Please give it a try. The link is below. my daughter is healing and through a clean natural diet and alternative therapy.
      google – Serra Enzyme – Serrapeptase and NES
      Contact me on my email address if you want to chat. good luck,

  2. Hi Emma
    I had my ileostomy op in November last year after a really bad flare up. I’d suffered from colitis for 4 yrs and to be honest I felt I couldn’t go on the way I had been, the quality of my life was just deteriating and I needed to gain some control again. Now I’m not going to underestimate how big a decision having this op would be for your daughter, especially at such a young age but for me it’s quite literally given me my life back. Everyone is different in how they deal with their surgery and how they deal with the ileostomy but for me it just hasn’t been such a big deal. I’m now in a position of thinking of wether or not to have a reversal as the ileostomy is so easy to deal with and I don’t know if I want to have more surgery?
    I would be happy if you wanted to chat further, I have so much I could talk to you about my personal experiences with the surgery and living with my ileostomy, I have photos that I took as a personal record of my journey (even tho it’s only 5 months on) that may give you an idea of how it looks and how it may affect your daughter.
    The main thing is not to think you are alone in this and there’s a huge amount of support out there, all you need to do is ask!
    Staying positive is the first step!
    J x

  3. I’m 24 years old and had my colectomy with ileostomy on Jan 27th. All that’s left of my colon is my rectum. The bag is real easy to live with, in some ways it’s easier than going out your butt, ha. About the stoma itself, she may feel the bit of ileum (small intestine) the surgeon pulls out move once in a while. That’s normal, as peristalsis does its thing. It’s not the intestine itself she’ll feel, but the stoma as the ileum moves against it. Remember that the only way our intestines register pain is through expansion of the intestinal walls. You can cut, stab and burn them and we wouldn’t feel a thing, so if or when the stoma nurse tells her, “You can’t hurt it” that’s what they mean. Taking care of the skin around the stoma is the most important thing, so using barrier or protective wipes (same thing, different name) is necessary. Oh, and as my stoma nurse puts it, simple is better. I just use barrier wipes and powder after cleaning the area to attach the bag, use my hands to press on it to help it adhere and boom, done. No problems. And most important, she’ll feel free. :-)

  4. Hello. As a nurse I feel the science behind the
    SCD diet ( google, it’s similar to what Adam’s
    food choices are from what I can tell) is the
    most important step to regaining colon health.
    There might be too much injury from the UC
    but it could be something to include in your
    daughter’s healing before surgery. I’m teaching
    my grandson about the SCD guidelines, K

  5. Dear Emma,
    I feel your pain. My 12 year old daughter has been suffering with UC since she is 2. I suggest you try SCD. It is working for my daughter. It is slow going, and tons of work, but we are almost six months in, and she is off all meds and managing to go to school. I am so grateful that I found out about this diet on this website. Get the book, “Breaking the Vicious Cycle”. I read it in an hour and started the diet within the next 24. So worth it! Hang in there and be strong.

  6. I feel your daughters pain I have had UC since I was 20 Im now 35. If she has had this
    for 8 years with no sign of relief and in the hospital more then not tell her to go for it.
    If you/she decide talk to your GI doc about Jpouch surgery. Basically they make a internal pouch with your small bowel. The bag is only temporary . They do this in
    3 stages some docs do it in 2 depending on the severity. First they ither take out the diseased part of your colon aka large bowel of all of it and leave your rectum. The second is creation of the jpouch where they hook last they drop the stoma back in and reconnect your plumbing. I had th

  7. I had the first two done waiting for the last part which is no more bag!!
    She wont have to worry about anymore meds! She will be free. It was the
    thing I could of done.

  8. Please Email me.
    I am 24 and have had UC since I was 9 years old. I got my first colostomy bag when I was 12 and removed after 6 months. I had a second bag when I was 16 and that was removed in 6 months as well… I know exactly what she is going through. When I was 12 I had no other choice.. They told me I either have to get a bag or I would be dead by the age of 17. I am still in a lot of pain.. I don’t know what to do. I recently moved to Oregon and I can’t find a good Doctor for nothing. I hope you or your daughter find the time to Email me. I would love to answer any questions she may have.

  9. Also, during the times I had a bag my Mom decided to homeschool me.. She had to work but the school sent teachers to my house. Maybe look into it? I also did schooling over the phone for a period of time.

  10. Hi Emma, I’m a 17 year old girl who just had surgery. I was in the same place as your daughter, I had to choose whether I live on drugs that have serious side effects or get my colon removed. I now have an ileodtomy, and it has given me my life back, it’s still early days but I already feel so much better and positive about life. I very much encourage taking the big leap and just going for surgery, it’s the best thing that ever happened to me.

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