Does Anyone Have a Child with Ulcerative Colitis?

Hi S.,

I grew up with ulcerative colitis and was in and out of hospitals for years. I found out when I was an adult that everything the doctors did with me was exactly backwards of what the condition needed. The doctors mishandled me for years, actually made it worse, even causing new diseases, and I had to determine on my own how to get rid of it.

S., I was in the recovery room at the hospital with my Daddy where they do the colonoscopies, etc last year. Daddy was in to get his feeding tube replaced and I heard the doctors telling patients the same thing they had told me when I was a little girl. They are still treating it the same way. Yes I got rid of mine without the doctors, naturally.

I would love to talk with you and give you some insight. Everything I did as an adult is safe for a infant or little one. It was frightening for my mom and I'm sure you're at your wit's end as well. Shoot me your number and a good time to call and I'll cover it on my nickel!

M.

I have no idea how a 20 month old can get this. But my father had it years ago in his 50's and it is mostly stress induced. He had to at first watch his diet to get the inflammation to go down - stay away from acidic foods, tomatoes, citrus fruit, hard to digest, popcorn, salad, red meat - then he has to keep his stress down. He also had to check for food items he was allergic to. He did NAET, though, instead of the medical way of allergy testing/elimination to help his body get past those things. It did turn out that he had problems with a lot of food allergies. Anyhow, google NAET. Good luck. your poor baby.

I'm really suprised they have diagones him so young. I have a friend who was diagnosed with that (both he and his sister). His sister has been very successful keeping it under control with medication and with diet. I know it's not directly related to diet, but there are certain foods that irritate the condition. Check out a book called "Nutritional Healing". It has a whole section on UC with all kinds of helpful ways to keep it under control. One thing to keep in mind is that UC is very often misdiagnosed. Doctors will often diagnose someone as having UC when they actually have chrones disease (they are VERY similar in their symptoms). So if you can't get the UC under control, you may ask for a second opinion and ask to have him re-checked. If he actually has chrones, you won't be able to get it under control treating it like UC. I hope this helps.

Also, because he is so young to have this disease, I would ask them to check for celiacs. This can also cause similar symptoms (not as close as Chrones). I just think I would be very skeptical of this diagnosis at such a young age because they misdiagnose this disease so often.

I have a friend who's daughter has severe bowel trouble. Unfortunately because of a lack of insurance she has not been treated by a physician but she suffers from severe bloating and diarhea and the SC diet and a gluten free diet has helped her daughter some but it took months.

I have a dughter with celiac disease and when she was diagnosed we were so thrilled ot know the cause of all her ailments and excited that the treatment (a gluten-free diet) would fix her. It helped her but didn't fix everything. We later realized she has many more medical problems so if your son is not getting relief with treatment I would suggest you ask the doctor's to look for other problems too in case his problem is multi-faceted. I have also found a lot of help through Yahoo Groups and another resource that might be able to help you find other families with a child with similar issues is Easter Seals.

Food intolerances can play a big part in how my UC flares. After suffering with it for 5 yrs and being on a very healthy diet, I found that I'm intolerant to gluten and dairy. My son has the same intolerances and also had a yeast overgrowth that was causing some issues. After eliminating the trouble foods and addressing the yeast problem, we've been fairly symptom free. We also have cranial sacral therapy on a regular basis. An integrative medicine dr. should be able to help you alot and help the meds to a minimum if even that.

Hi S., I am a mom of a 9 year old girl who was diagnosed with UC 2 years ago. Prior to that she was the picture of good health - never even taking an antibiotic. What I've learned over the past couple of years is that it's an autoimmune disease so her immune system attacks her colon. I don't buy into any of the advice about what she eats - when she experiences a flare it comes on over a period of time, not just after she's eaten. When a flare is coming up we find that she starts experiencing stomach aches and we notice her eating habit change. I try to go with what she communicates because I do believe her body is telling her to slow down with her eating and it knows what it can tolerate. During a flare is the only time we regulate her diet but to be honest her body regulates it because she really doesn't eat much and tends to lose weight. The key seems to be figuring out the medication. We had a bad experience with Imuran as it turned her immune system off and she had to be hospitalized as she literally stopped making new blood cells - very scary. However, we don't like Predisone and are very adverse to Remicade so following a flare in January, we're trying her on Imuran again but at 1/6th of the dose from last year. When she has stomach aches she likes to lie down with a heating pad and she even sleeps with one so she can use it if she wakes up with a stomach ache.

It's really hard with the little ones because they can't communicate what they're feeling and we don't know because we don't have UC. We did attend a symposium a while back and learned about probiotics from a UC Davis doctor. We also worked with a doctor from India who said this is almost non-existent in her country and they take a probiotic daily. So, we're using one we buy on the internet - can't say for sure it works but it seems to make sense to build up her gut with good stuff.

Hope this helps a little bit. I know the CCFA has an upcoming patient-doctor symposium in August of this year - not sure if it's in Sacramento (I'm in Elk Grove) but it helped my husband and I to hear information from doctors who specialize in this condition. Also, the CCFA has teleconferences from time to time where doctors do presentations on the disease and medical options.

Lisa from EG

It is absolutely alarming that a baby your child's age would get this. Do you have any idea as to the cause?

A relative (adult in 30's) has had it for many years (since teens). It has gotten progressively worse over time. It seems like the doctors never get to the root issue.

If it were me I would look at integretative medicine as well diet.

Good luck and I will pray for you guys. Wish I had more to offer.

PS: S. - I'm really sorry if I annoyed you with my answer. I just have never heard of a child that young with UC (as I mentioned my relative was a teen when it hit). You must be so worried. Good luck and all the best to you both. Keep digging for answers.