Ulcerative Colitis Tips


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My 1 Year Old Daughter Has Ulcerative Colitis

Hi everyone, I’m a mom of a 1 year old baby girl.  She was born with a Jejunal Atresia and doctors had to take out such a significant amount that she has now has Short Gut Syndrome.  She’s been on TPN since birth and doing well not until recently when i started to see blood and mucus in her stool again….so we had to have a procedure done (endoscopy)…..and voila!…. on top of everything else, the doctor diagnosed her with ulcerative colitis.  Apparently she had it before and  that’s why they had to give her steroids, but he is even surprised to see this, to have two things,unrelated, going on in one patient.  How much more a baby.
Her first year of life has been very tough for both of us.  It’s hard for a mother to see her baby toss and turn, moaning in the middle of the night because of pain.  I know she’s in pain and I don’t know what to do.  She been the same weight for more than two months now, even with tpn and her g-tube feeding because of her diarrhea.

Question: Anyone going thru the same or similar issues?……hope i can get an idea or inpiration from you…

Submitted by “Mommy B”




7 Responses to My 1 Year Old Daughter Has Ulcerative Colitis

  1. Tony (UK) June 10, 2011 at 4:18 pm #

    Sorry but I can’t give you any inspiration apart from to say how much I and I’m sure the majority of visitors to this site feel for you and your little child, it must be hell.

    If anything gives you comfort it may be that your story makes the rest of us stop thinking about ourselves for a while and realise there is someone else out there suffering more than we and especially so when it is an innocent baby girl.

  2. Linda June 10, 2011 at 6:33 pm #

    Hello, I’m so very sorry to hear your baby girl is going through so much hell with UC right now. I can tell you I can definitely relate on the mother’s end as my son has UC. He was diagnosed at age 5 and is now 6 1/2. I can’t even imagine how worried you are, as your daughter is still a baby. I know you were asking for some inspiration, so, I hope I can give some to you. Just a little over a year ago, my son was in the hospital with bloody diarrhea, mucous, lost over 10 lbs, and was facing surgery. He had to get a blood transfusion and IV fluids. I was so desperate and worried, and, that is when I decided to start him on the Specific Carbohydrate Diet. None of the 3 Gastro docs we have seen have now ever once suggested diet to have any effect on UC. I wanted to believe everything the doctors were telling me, but, my family and i went with our “gut” instincts and started SCD last sept. 9, 2010. Adam, and a lot of other people have much success on here with it. My son has now gained back all his weight, and has not had any blood, mucous, diarhea, or pain in at least 5 months now. My son has also been on alot of medications, but the one that for sure worked, was prednisone and the SCD diet. I know your baby is so young, so, you are not sure yet what to do. I can tell you this, don’t give up, change doctors or go see a specialist if you have any doubt on the her getting the best care, and, remember, the doctors don’t know everything, but, they can give you guidance. Keep strong for your baby, don’t give up, and, feel free to ask me or anyone else on here any questions and we will be glad to answer. I hope this at least made you feel a little better. take care. Linda.

  3. Shirley June 10, 2011 at 11:41 pm #

    So sorry to hear of your babys illness. The poor wee soul. Hugs and cuddles for her

  4. Pricilla June 11, 2011 at 5:58 pm #

    Hello,
    I recently started working with a nutritionist Karen Hurd, her website is http://www.karenhurd.com. I have UC and I have seen more progress working with her for just 6 weeks than I have with numerous medications during the last two and a half years. Check out her website and see what you think. I highly recommend that you at least speak to her once to see what help she can offer you and your baby.
    Hope this helps,
    Pricilla

    • Amy October 6, 2012 at 7:32 pm #

      Hello Pricilla,
      I too am using Karen Hurd but it is going much more slowly. I would love to email with you about your success with the diet (if it is still going well). Thanks, Amy

  5. Tatiana March 15, 2012 at 1:13 pm #

    Hi
    My daughter was diagnosed with UC at 3 years old. We tired all the meds and after about 2 years we found a Dr. that would listen to us and help us out. She is on Pentasa, 6MP. I also took her off all foods and did liquid diet until her colon healed. She was put on Latose Free milk which we found a book that was excellent for this. Eating right for a bad gut. We followed this book and added probiotic to her daily routine. Vitamin shoppe has the Ultimate 10 probiotic which she uses. there is baby versions that you mix in their baby food or drinks. its banana flavored which my daughter took. Now we started her on Probiotic 7 years ago before it became popular. We slowly put her on Oatmeal once a day to soak up the acids in her gi track. Now she is 11 years old and she has had only 1 flare up that lasted a week. When she was 3 and just got diagnosed by scope her colon was 95% effected by UC. She was maybe 15 lbs. in ICU for 10 days could not talk or move from being so weak and sick. Once we found out she had it she went on prednisone for amount of time. and tried all different types of meds. the original dr. almost over dosed her with meds and she ended up back in ICU a year later. It was horrible for a parent to see their child so ill. I ended up firing him and got this new dr. that is about 40min. away from us but she has been a god send. In 2008 she had that flare up that lasted a week and we put her back on prednisone on a very low dose 2.5 mg daily for 2 years. she has been off of pred. for 2 years and doing great. only concern we have is she is very short for her age due to the UC and she is starting to fill out and we are not having to watch her weight. Our new battle.
    I am sorry this is all scattered, it has been a long road for us and if you would like to talk you can email me.
    Testing she had
    scope,
    liver biopsy since liver can be involved
    blood work every 3-6 months
    allergy testing for both foods and indoors outdoors allergens.

    celiac testing which was neg.
    and with the books help trial and error with different foods. what she can tolerate and can not. We adventually introduced her back to all foods except corn of any kind, nuts, seeds, pop and limit her to a certain amount of sugar a day. also skins on fruits were on and off again foods.
    Good luck and I will say prayer for your baby.

  6. Raj December 20, 2012 at 10:47 pm #

    Dear ‘Mommy B’,

    How is your daughter doing? I pray she is better and that you have gotten a better hold of her condition. I want to share my daughter’s experience, and I hope to get some insights from many other more experienced parents here.
    My daughter was diagnosed with UC in early July 2012, a few weeks before her second birthday. She was having symptoms about 3 months before but we were unclear and went through a series of tests before the colonoscopy. She was put on 20mg Pred and after the addition of sulfasalazine tapered Pred to 4mg before the flare came back. Doctors wanted her to go on to 6MP, but we resisted. The Pred went up again, and after 3 weeks of full dose, we began a second taper. It was quite clear, however, that the flare was not fully receding. Things did improve considerably when we removed the final processed food that remained in her diet i.e. formula (including amino-acid based one’s). The blood stopped, although a little mucus remained. As we are living in the tropics, we turned to fresh tender coconuts, removed the coconut meat and mixed with water, which effectively became her formula. Pumpkin, coconut milk, coconut water, bananas, boiled carrots and bottle squash comprise her diet now, the only addition being elemental calcium to prevent a deficit. She also has a bit of aloe vera juice and stone apple paste (aegle marmelos). She is now down to 2.5mg Pred. and we are hoping that we can come off in a few weeks. Her blood works have come out good. She is always hungry and eating most of the day but her weight has gone down a little. Really not sure what to do to increase her weight and I personally am convinced that there is a digestion issue linked to this. Cereals that we tried (rice, millet) usually lead to an increase in mucus, so we don’t want to do this at this stage. Any advice suggested would be much appreciated.

    with best regards

    Raj

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