10 Yr Old with Ulcerative Colitis & Crohn's Disease

Updated on January 06, 2009
M.R. asks from Oak Park, CA
20 answers

Our 10 yr old daughter was diagnosed with Ulcerative Colitis/Crohn's disease 3 weeks ago. We have been so fortunate with her health up until now and the diagnosis, medications and testing has really thrown me for a loop. Is there anyone out there who has experience with either of these conditions? I could really use someone to talk to!

Thanks in advance
M.

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P.A.

answers from Los Angeles on

I would call Santa Monica Homeopathic Store ask for Kristin or Greta and see if they can help they are amazing!!!

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D.B.

answers from Las Vegas on

I don`t have any experience but i live near you, I live in Centennial Park and you are welcome to talk to me any time you feel the need.i`ll help the best i know how! My name is Deborah Berg and most the town knows wear i live, you could ask anyone wear the Bergs live and they can tell you. OR you could call my sister by calling; "Cook Emily" she is listed in the phone book.

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E.T.

answers from Los Angeles on

A good friend of my son was diagnosed with this in 2nd grade (they are now in 5th grade). His parents are very oriented toward holistic medicine and tried everything that they could, from radical changes in diet to ... I'm not even sure what else. Eventually, they decided to try the medication suggested by their doctor and my son's friend has thrived. He is a phenomenal athlete who participates in all sorts of sports, has a completely normal life with very occasional relatively mild bouts. The one dietary restriction is no popcorn (which he can live without -- thank you, Pirates' Booty!). I wish that I could say that the holistic approach had been successful, but it was not in this boy's case. We also had a camp staffer last year at our family camp who has Chrohn's. The one thing that he needed to have another staffer substitute for was the long hike where there are no bathrooms available for quite some time. Otherwise, he was leading an incredibly active, exciting, healthy-seeming life! (I only found out about the Chrohn's because his mother happened to visit during our time at camp and we ended up having some long conversations. It was not public knowledge and there was no evidence of it.) So, I would encourage you to be hopeful that the scary part of this will be over soon! E.

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A.O.

answers from Las Vegas on

Hi M.,
My older sister has crones. Her biggest issue is getting enough nutrition absorbed into her body. Check out this website www.sunwarrior.com they have several products there that are being tested by doctors for crones and aids patients because they are so easily digestible and high in nutrients.
Good luck,
A.

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N.S.

answers from San Diego on

Hi M.,

I'm so sorry for what you are going through....Please contact Dr. Jaime Kaszer at ###-###-####. He will talk with you by phone and explain how he helps resolve both of these conditions in a holistic way.

Best wishes,

N.

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J.H.

answers from Los Angeles on

I was diagnosed with UC at the age of 24. After dealing with it for over a year prior to that and just hoping it would go away I finally sought medical attention. It was a long hard road to get things to calm down, but finally through daily medicine, steroids, and suppositories; I am finally in remission. Though I will always be at risk for it flairing back up, I am hopeful that this has been controlled and now know what to do to stop it before it gets way out of control. Besides the medical stuff that I did, I noticed that stress played a huge part in the flair ups. I was planning my wedding, dealing with a hellish year teaching, got pregnant the month after we were married.... lots going on. Once the stressors were gone the UC would calm down. I still find when things are stressful now (like our current move) I get cramping and looser bowels and have to really watch myself. Your daughter is going to need your support in dealing with this. I know as an adult it was hard, and I am sure it is even harder as a child. You can contact me if you would like, and I will help you in any way that I am able to. [email protected]____.com The sooner you get her help, the better, it is not fun to live with either of these.

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J.C.

answers from Reno on

Hi M.,
First and probably most important is find a doctor that you both like. I was 20 and went to a GI specialist that told me there was nothing wrong with me, I was too young to have anything wrong, blah blah. I went elsewhere after that and found I have ibs and it runs in the family, my dad has colitis. The best thing for me was to identify foods that made things worse and eliminate them from my diet. It took a long time to get back to normal, but drugs only did a fraction of the improvement, the rest was what I ate. For a young girl, your daughter will be frustrated, but be there for her. You will need to remind her eating something that tastes good but turns her intestines into cramping living hell isn't worth it. Also stress and monthly hormones play a big part in things. She'll probably have times when things are worse right before her period starts (when she gets there if she's not already).
Good luck.

R.E.

answers from Los Angeles on

Dear M.,
There are many problems a healthy diet will cure that aren't addressed by most doctors. However I found these two doctors have a lot to say about what to do.
They are Brenda Watson:
http://www.brendawatson.com/
and Dr. F. Batmanghelidj, who said, "You're not sick; you're thirsty. Don't treat thirst with medication."
http://www.watercure.com/index.html
http://www.watercure.com/wondersofwater.html
He said "Water prevents and helps to cure colitis.
Colitis pain is a signal of water shortage in the large gut. It is associated with constipation because the large intestine constricts to squeeze the last drop of water from the excrements - thus the lack of water lubrication."

Check out what they have to say!
Good for you for getting it early!
blessings,
R.

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J.L.

answers from Los Angeles on

Hi. I have had UC since 1995. The BEST UC Dr. in LA in Dr. Ed Feldman at Cedars. The best pediatric UC Dr. is Dr. Cynamon. You can get his number from Dr. Feldman's office at ###-###-####. Also, the local chapter CCFA www.ccfa.org is wonderful. They have a fabulous kids camp and activities to support kids going through this. Hope it helps. Pls feel free to contact me with further questions.

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L.N.

answers from Los Angeles on

Hi M.,
I had suffered from intestinal disease as well for a couple of years before I discovered a book called "Breaking the Vicious Cycle". I read the book, it made so much sense to me and I started a special diet, recommended in the book. Once you read the book, and decide to try, you can join a huge on-line community of people, who are on this diet. Start from their website "www.breakingtheviciouscycle.com". I can't say enough of good praise to this approach. Please check it out, before your daughter is put on prednizone or remicade. While you are reading this book I would also recommend an acupuncture session by classical 5-element practitioner, I can recommend one depending on your area, so please email me with your location.([email protected]____.com) The sooner you start with acupuncture and the diet, the easier it is to recover, before much damage is done. Food we eat plays tremendous role, despite what your GI will tell you.
Good Luck and Happy and Healthy New Year!

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T.L.

answers from Los Angeles on

M., I have a bunch of weird autoimmune stuff and have had symptoms since I was a little kid. Still trying to figure it out, and unfortunately didn't get it under control before having to have my appendix out. I have symptoms of Crohn's, IBS, and colitis, and the biggest thing I did that changed me from frequent unpredictable diarrhea and severe stomach cramping and intestinal burning was start driking Lactaid instead of regular milk. I rarely if ever have any of these symptoms now.
You might need to take your daughter off dairy altogether, although I personally have not done so yet, but I probably should!
The other thing I HAD to do was start taking refrigerated probiotic powder that can be found at places like Whole Foods (I like the Jarrow brand). Whenever I start having stomach / intestine problems, this REALLY helps.
Also, I had to figure out trigger foods. For me, no large amounts of soy (i.e., no tofu dinners), no broccoli (unless I want to be in so much pain I want to die), easy on the cooked onions, no large amounts of garlic, etc.
Just simple modification of diet and probiotics keeps me pretty happy.
PLEASE, do not put your daughter on prescription meds yet, especially long term! I have been down that road with the automimmune stuff, and it's a road to disaster! All meds have side effects and can really do long term damage to other organs and systems. Try EVERYTHING else BEFORE you try meds! Give the body a chance to heal itself with more natural methods.

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N.B.

answers from Los Angeles on

Hi M.,

Wow! What a tough hand to be dealt at 10. I am 37 and I have had Crohn's Disease for 10 years. It's not easy, but it is manageable. Hang in there!

I would be happy to talk to you in person or on the phone, but here are a few things I think you really should do:

1) get a GREAT GI doctor. If you live near Encino, I have an amazing one. If you don't, I can give you the name of mine and maybe they can refer you to someone they think is great.

2) get into a support group through CCFA.org. Everyone in your family should find a group. They have parent's groups, sibling groups, but the most important thing is that your daughter meet other kids who are going through what she's going through. During the summer, they have a camp called Camp Colitiscope and the kids really have a lot of fun!

3) know that it is NOT your fault that she has this. This should actually be the #1 thing. You can't fix it, but you can make her feel comfortable in her own skin as she deals with the road ahead. Crohn's is a very private thing as it deals with "bathroom" stuff and can get very embarrassing at times (if we talk I can share my shopping mishap with you).

4) repeat after me: you are going to be okay and she is going to be okay. She will have this her whole life. Hopefully most of her life, it will be in remission. Mine has been since 2002 and I am thankful every day for it!

PLEASE e-mail me [email protected]____.com or call
###-###-#### and I would be happy to talk you through some of the stuff you are feeling.

All the best!
N.

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E.P.

answers from Los Angeles on

I am sorry I do not know of this disease but this healing institute through nutrition has lots of articles on diseases, including that affecting children, and has been known of healing children with even cancer. You can call them and see if there are any back newletters related to this. I have read their books and applied a modified therapy to maintain health and wellbeing to our family, I believe they are a Godsend.
www.gerson.org
888-4-gerson
I am sending a prayer out for your family.
E.

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J.P.

answers from San Diego on

I have had experience with these, but they are all with alternative treatments. Bad health does not come overnight. I builds over time. My friend had severe colitis and the Drs. said her future was on Prednizone and possibly a colon bag. Her colon was grey and tearing and in really bad health. At her last colonoscopy they said that her colon was pink and healthy and without knowing her history, they would not of know that she was sick.

God Bless!

J.

A.L.

answers from San Luis Obispo on

I'm sorry for you and your daughter are going through! I was diagnosed with this disease 3 years ago at the age of 45. It's tough because there is little the person can do to help it heal; i was told that diet does not have an effect. I was finally (after one year of bleeding) put on a medicine, a suppository, that worked wonders. I fortunately have not had a relapse, but was told the disease will be with me my whole life.

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R.L.

answers from Los Angeles on

Hi M.,

I'm in the middle of this right now with my 19-yr old son. I'm not happy with his GI specialist, who seems to think that it's not important to get an accurate diagnosis or treat him. It's really hard for me to deal with this, since he now lives 400 miles from home and I'm getting all of my information 2nd hand. It seems like getting a diagnosis is taking forever!

In my frustration, I spoke to a friend of mine who is a GI specialist at UCLA. He recommended getting my son to move home for a while and go to Cedars Sinai in Los Angeles. According to him, Cedars is one of the primary research and treatment institutions for IBDs in the US. He highly recommended seeing Dr. Ted Stein. I can't give you a personal recommendation because we haven't pursued this avenue yet. I've asked my son to change practitioners and go to a friend of ours in Santa Cruz (where my son is currently living) who is an outstanding GI specialist. Fortunately, he seems to be listening. I really want him to get his problems under control as soon as he can -- he's become almost house bound, can't get to his classes, and can't hold down a job.

I saw an interesting *reputable* clinical report on the experimental use of growth hormone for Crohn's disease. The study was completed in 2003, but I haven't seen any follow up on the research in the medical literature. (I've also only read the abstract thus far, as I'd have to pay to download the paper. If I decide to do this, I can send you a pdf copy if you wish. Expect it to be quite technical, though, and probably something you would be best passing off to your doctor, unless you have a good background in medicine or physiology.) In thinking about my son's symptoms over the last few years, my guess is that he's had manifestations of some kind of IBD since he was about 11 or 12, but that it was mostly masked except for occasional flare ups that usually occured around late September or early October, that is, around the time there was additional stress from the beginning of the new school year. My son had a diagnosed growth hormone deficiency, however, and was on replacement therapy until about a year before he left for school at 18. I'm starting to wonder now if the GH treatment was keeping the IBD mostly in check.

BTW, there's also a heritable pattern of sorts in our family. My mother had some kind of colitis in her late teens through early adulthood, as did I. Whatever we had was unlikely to be Crohn's, however, as symptoms dissipated by the mid- to late 20s for both of us.

I wish you the best of luck with your daughter. I'm sure I'll be learning quite a bit more over the next few months as we seek a diagnosis and I'll be happy to share anything I learn with you. You can contact me through Mamasource and I'll send you my email address and phone number.

R.

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J.W.

answers from San Diego on

Look into a second opinion if you feel it is needed and also search for natural remedies for this. She may have to eat bland but there are options. If her health has been good up till now why the drastic diagnosis?

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S.R.

answers from Los Angeles on

Hi M.~
I know I am late to this but I wanted to tell you that a former neighbor of ours (now in 8th or 9th grade) was diagnosed with Crohn's Disease as a child. Every year he goes to a camp just for kids with Crohn's, I wish I knew the details but I think it was in Lake Hume (or Hume Lake?) Anyway it was a godsend for him and he looked forward to it every year. It did so much for him to learn how to cope and also just be able to feel like a regular kid every summer with the support of others who can relate.
Sorry I don't have more info about it but I wanted you to know it was out there!

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C.H.

answers from Los Angeles on

M., I'm so sorry to hear about your little girl getting this awful disease. I was diagnosed almost six years ago when I was 29 with Crohn's Disease. I have an uncle and a 2nd cousin who also have it, but my mom & sister both have IBS. So yes, there is a genetic component to this, but I totally agree with a previous poster - it is NOT your fault (or your husbands).

In the beginning I tried many holistic approaches to fixing my intestine and some did help for awhile, but I eventually restored to the meds my doctor prescribed since those helped to control the symptoms. I admit, I got complacent for awhile and in the middle of '06, I got very, very sick for months resulting in a bad flare up.

After that, I rededicated my efforts to going to CCFA (Crohns & Colitis Foundation of America) conferences to listen about the latest information on nutrition & medications. I highly recommend going to the conferences when they have them. The doctors that attend come from some of the best GI colleges & institutions from across the country.

I've gotten some wonderful leads on supplements to take that has helped me out quite a bit. Not only that, you meet other people that are in a similar situation that you can talk to (it's really helped my Mom cope with this & empower her to help me be healthy).

The Orange County chapter seems to have more frequent events, about every few months. If you would like to email me, I can forward you the conference info the next time I receive it.

Lastly, I'm going through a very bad episode as we speak. I was hospitalized for 4 days back in October (the first time that's ever happened) and have been struggling with the inflammation ever since. I'm now on two more medications to help but I've also started seeing an acupuncturist and so far, that's helping too.

Don't be afraid of the medications that the doc gives you. But at the same time, don't be afraid to try alternative medications. I truly believe that both can help, that there is a balance than can be reached.

Oh! And yes, diet does play a big part in how your daughter will feel. When I'm in remission and my intestine is healthy, I can eat anything, no problem. But when I'm sick, like now, the only things I can handle eating without resulting in cramps are highly processed foods. Sounds weird, I know, but I've had a few doctors recommend this and it helps. Highly processed foods like rice, pasta, white bread, etc. break down in the stomach so the intestines don't work so hard. Lots of water helps move things through, but fiber (whole grains, veggies, fruits, etc.) will cause pain because of the bulk rubbing up against the ulcers/inflammation.

I wish you the best of luck and you can reach me at [email protected]____.com hugs!! It'll be okay!! :-)
C.

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