My 6 year old's UC and diet

The white rice was a way to eliminate all allergens like wheat and dairy and to let the colon rest. It has rested (no poop) but not healing (still blood). I am thinking about now adding things in slowly and start very bland, but she will need some protein/fat soon and maybe iron supplements. She was on low res for 2 months with up and down changes depending on what medication we were doing at the time. Is there nothing better than trial and error and lots of time and money spent? Can anyone tell me if a "normal" life for a child is possible with major diet restrictions? No pizza parties, no cookies with a friend, etc.? Sounds misserable, but so does surgery. Hard to stay positive when all choices look bleak.

Those who have succeeded with diet, is it a flare-free life or do you occassionally need a round of steroids? I've heard about fungus, how would I know if that's her issue other than lab tests?
Her GI is offereing Rowasa enemas now, and may have a couple other minor things to try, but after Remicade, surgery is my next option according to him. Her transverse and descending colon was ulcerated at the colonoscopy last year, but they also found microscopic ulcers upon biopsy in the ascending too, so I don't even know if Rowasa will help if it's pancolitis.

I'm still amazed that people like you offer your time and advice to people like me who are lost and confused--thanks everyone.

A lot of people on the forum have found that even when the whole colon is affected with ulceration that the lower part is the part giving the most trouble so using an enema can cause great improvement.

I am so sorry to hear you are going through this. I know how you feel my daughter was diagnosed at 15months she was having 15 to 20 bloody bowel movements a day. She had numerous stool samples done and they never found any bacteria/ parastite that showed up on normal stool testing.

After years of suffering she was given an antibiotic , that completing change her UC. Her whole colon was inflamed , and she was facing surgery. NOW she is living life like a normal 13 year old with normal stools everyday.

Her doctors now admit to me that she had a parasite/ bacteria in her colon that the "normal " stool testing did not find. They cannot test for all bacteria and parasites it is just impossible.

I am just trying to help , I was in the same place you are, and I know the saddness you feel. Please stay strong. Also I would suggest taking her to an immunoligist for further testing. 70% of the immune system is in the colon. We took our daughter to one and he was the one that searched for the answer to what was going out with her body.

I would also look into Fecal Transplant, some doctors are doing it now and find that some causes of Uc is the imbalance of bacteria in the colon . Whether it is from parasites, yeast, or bacteria. Sometimes a large amount of good bacteria can over take the bad and let the colon begin to heal.

Here is our story I made a letter that you can give to your Gi , if you consider antibiotics. Flagyl, Cipro, are the two most common ones that they try on UC and Chrons.

Please email me if you need anything
https://www.healingwell.com/community/default.aspx?f=38&m=1689855
 

You can also google Haileys letter and her story will come up

Post Edited (haileys letter) : 3/23/2013 10:05:46 AM (GMT-6)

ajaja, if she does have a bacterial or fungal problem, then white rice is feeding all of that. have you tried eliminating complex carbs with her? all grains are pretty much equal in my opinion.

i've heard of manuka honey, too. just saw it at the health food store. one little jar was $30. very pricey.

flagyl never did anything for me either. i don't think it's a strong antibiotic at all- especially for UCers since we probably have way more bad bacteria than the average colon.

i hope your naturopath can think of something and do some testing for her. definitely get food testing done- even if it's just muscle testing. at least that way you will know her biggest triggers.

Ajaja,
Wondering why your doctor is so quick to dismiss fecal transplant? Like everything, the results vary, but studies are very promising. Perhaps she wants to reduce inflammation first?
I do hope you find some relief for your little guy soon! I know how hard this is!!

Are you going to continue with Remicade? It took me 5 infusions plus the right combo of rectal meds to get into remission. I know Remicade isn't the most ideal option (I'm an adult, and my parents hate that I'm on it), but since you've already started, you might try a couple more infusions.

Is she still taking the rectal meds? Personally, I found alternating b/w steroid and mesalamine rectal meds to be the most beneficial.

Where do you live? You might want to get a 2nd opinion (Boston, Philly, Cincinnati are top pediatric GI hospitals).

Ajaja,
I've posted before about how my daughter was given a similar drug to uceris (called "clipper" available only in Europe - you can google it) for her UC a few years ago. She did not grow at all during the time she was on it. She has been on a lot of pred too and has grown on everyother day, low dose pred. So, I do think that uceris is not a long-term drug for the treatment of UC in children especially. It is much stronger than pred, though local and supposedly unsystemic it does have systemic effects. I wouldn't rely on it - while she's on it perhaps you could consider next steps? I can't remember if she's tried the big gun meds or not. Personally if you're not willing to consider gaps/scd/paleo (it is hard and restrictive and it doesn't work for everyone but it does work for quite a few people with tweaking ie. removing dairy) or fecal transplant etc then perhaps it's worth researching about surgery. I have a number of friends who have children who have had surgery and they're all MUCH better. Since surgery is possibly (probably considering her age) in her future, I'd try to disassociate any negative ideas she has about it. I've always been pro surgery but for various reasons haven't gone down that road (though we were 1 day away last summer) but I know the stigma especially for girls of having the bag. From my daughter's diagnosis I've always presented it as a normal thing that some people need to feel better and shown her pics on the net of girls/kids/teens with ostomies wearing bikinis etc. She has ostomy dolls as well and that has really helped her. I think fostering a positive body image is very important. If she's picking up on you anxiety or negativity about surgery/ostomy then she'll internalize it. Just a thought (not trying to be judgmental, sorry if it comes across that way, I was in total shock after my daughter's dx and it's really a nightmare). I hope something works for her very soon.

I'd try anything before surgery. So she has been on Mesalazine, steriods, Remicade. There is still more meds available out there. Have you also tried to change the frequency of Remicade? I had mine every 8 weeks and changed it to every 6 week since I got symptoms during the last 2 weeks before the next infusion. Also there is still Humira.

Uceris has been great for me. Isn't 6 mg for maintenance? I think someone on this board mentioned it. I'm currently taking 9 mg.

SCD... you can adjust it! If she cannot do flours/nuts, leave it out. I'm doing partially SCD and all I'm eating is spaghetti squash, lots of chicken broth and tomato soup, scrambled eggs, spinach and the SCD yogurt for probiotics.

All the best for your little girl. I'm so sorry to hear that she's suffering so much.

Amazing news--after 2 1/2 weeks on Uceris, she is sleeping through the night, the frequency is way down and there is little to no blood. I'm so excited with the results, but I am cautiously optimistic about what to do when we get off it. We are also doing gluten free/dairy free/sugar free (or very low) so hopefully that will help heal while the med gets her out of the flare. She's on supplements of priobiotics, GI Protect powder (mixed with water), liquid Vit. D, iron, multi vites, zantac, balsalazide, uceris and tapering steroids. I have an end goal in mind of no meds and a lifetime of naturopathic medicine and lifestyle change, but we will see. One step at a time. She also is doing extensive stool cultures and IgG food sensitivity testings with the Naturopath. Just wanted to share the good progress with you all.