Hello from mom of daughter with Crohn's

[Judy1000]

Hello everyone,
How wonderful to have a forum where we can share our concerns and get together for mutual support - Crohn's is not always easy to talk about in the context of day-to-day life! My daughter was experiencing loss of weight, hair, and energy. She had incredibly dysfunctional bowels, and regularly experienced fevers and abdominal pain - we were so afraid! When she was finally diagnosed with a severe case of Crohn's in 2010, I got to work right away learning everything I could about the disease and its treatment. We sought out the stories of those who had successful results - to encourage hope and develop possible models for recovery- and I devoted six months to working with her full time to improve her health (we were fortunate enough to be able to homeschool - it made meals/symptom management so much easier!). She is symptom-free and lives an active life without meds. She has remained in remission/recovery with diet and lifestyle management and lots of prayer!
I know Crohn's can be frightening and that everyone's situation and experience is different. We can never be sure about what is ahead, and want to continue to learn all we can.
Judy

 

[DJW]

Hi and welcome.

We have a fantastic group of parents here.
Sending you and your daughter my support.

 

[my little penguin]

Welcome

Happy to hear your Dd is doing well
When was her last scope and imaging?
Do you go by labs and scopes or just symptoms?

How old is your dd?

My kiddo is 11 and was dx 4 years ago.

Check out the parents section
http://www.crohnsforum.com/forumdisplay.php?f=49
Tagging
Clash
Maya142
Jmrogers
Mehita
Tesscom
Crohnsinct


Come join us there
Ask questions and look around

 

[Jmrogers4]

Welcome Judy,
That's fantastic she is feeling well long may it continue. My son is 16 he was diagnosed in 2010 as well.

 

[crohnsinct]

Hi there and welcome,

I have two daughters with Crohns. O was dx'd at 12 and had no symptoms other than low weight and slow growth. Her first flare was major and landed her in ICU. The doctor tells us that she likely had the disease for about two years and it was silently doing its damage. She was put right away on Remicade and later added methotrexate. She used steroids in the beginning to induce remission but was declared steroid dependent and so we tried exclusive enteral nutrition. That worked and then we moved to a clean diet and later vegetarian. She also exercises...ALOT. She is doing great. Gained 45 pounds and grew 8 inches. Not so much as a blip in three years. Her last scope looked visually beautiful. Inflammation was found with biopsies

My second daughter was dx'd 9 months ago at 11. She still isn't in remission. She is on Methotrexate and used exclusive enteral nutrition to induce remission but as soon as we introduced food...even clean food, inflammation returned. Then we moved to steroids. They didn't work. Doc doesn't want to move to biologics yet so we are back to diet. Exclusive enteral nutrition and then one of the diets being currently researched.

Diet and lifestyle definitely matter. Lots of research regarding diet and exercise out there. Are you monitoring her with labs (blood and fecal calprotectin). How have those been? Scopes and biopsies?

Do you mind me asking which diet you are using and if you are also using supplements?

I am very interested in this as we have not had any parent report success not using meds. Yes, clinical remission but the disease was still silently doing its damage which either showed at scope or in later trouble. There is another mom here trying diet and no meds but her daughter hasn't been scoped yet so we are anxiously awaiting he results.

Since the doc won't move my younger daughter to biologics, all I am left with is diet (she is staying on Methotrexate) and that failed once before. We are going to go slower this time and researching the various diets but having had one daughter suffer from undetected silent disease, I am a tad nervous.

 

[Maya142]

Hi and welcome Judy!
Glad to hear your daughter is doing well. I'm curious about what diet you're doing too, and how you know it is working. Like CIC said, we have barely any parents, if any, who have had a child get better on just diet and no meds.

My daughter is now 18 and has been on a number of medications - including, Remicade, Humira and Methotrexate. Now she is on Simponi and doing well. We have also used semi-elemental and elemental formula for extra calories and I'm sure the enteral nutrition helps.

Check out the parent's forum -- there is a lot of great info there.

 

[Lady Organic]

Great and welcome, I am also interested in further details regarding diet, GI dr monitoring and to know for how long she has been in remission!

 

[Judy1000]

Thank you, everyone, for the amazing support and caring words!

Lady Organic, she has been in remission since the spring of 2011 (was diagnosed Nov. 5, 2010)

MyLittlePenguin - first and last scope on Nov. 5, 2010. Her inflammations markers and fecal tests haven't warranted another, and she also doesn't have symptoms to justify another.

Crohn'sinCT - I'm just finishing up a short article about the main supplements we used. Vit D3 and Cod liver oil were important, but some of the best results came from combinations of turmeric and probiotic foods. So scary to end up in ICU! So great about your older daughter's improvement ... will keep both in my thoughts and prayers.

Maya,
I actually have much of what we did in terms of diet on an informational website. Am I allowed to give the name of it here? It looked like we were not allowed to.

Even though my daughter had a severe case and her doctor said she would probably have to go on steroids and Remicade, we talked him down to Pentasa. He was reluctant, but agreed. We used info from books, websites, and academic journals, and within 6 months she had weaned herself off and the doctor said that was OK she didn't need them. We continued yearly blood and stool testing for a couple of years, and she has an annual checkup with a GP, but he says there are no symptoms to justify anything else.

She's a 19 year-old college and continues to monitor herself there. It is a great school where she access to lots of fresh veggies, unsweetened almond milk, and gluten-free options (which are also potato and corn-free). There are tons of options that work for her, and she has learned to survive trips on her own - knows a handful of restaurants where she can eat if she has to, and is good at packing her own stuff.

The best things she did were to keep a food journal and to go completely off grains and sugar, but we did a lot more than diet. We changed sooo much about her life - took away stressors, did massage, exercise, gave up stressful violin competitions, let her do almost no schoolwork for a semester except for Latin ... It worked. And there were lots and lots of prayers!

Thanks again,
Pax et bonum,

Judy

 

[Lady Organic]

thanks for the update Judy! wow thats awesome for your daughter!

please share the name of your daughter's diet. we know you are not here to sell anything A lot of diets' names circulate freely on the forum already! I am always interested in reading and inquiring about dietary options. Im already grain and sugar free, half-way through SCD and IBD-AID diets.

I believe as well a holistic (multi-variables) approach of treating disease offers greater possibilities of success. Good for you and your family!

 

[Optimistic]

Hi Judy.

What diet is she on? I'm very eager to hear.

My son needed ridiculously high levels of steroids for maybe 5-6 months and then exclusive enteral nutrition to get into remission. Now he is on SCD with 30-50% EN and after a year is in clinical and mucosal remission. We at going to stay the course for now. While he does long for real pizza and me not hovering over his food, he now goes to camps, school trips, etc and can keep to his diet. Options are increasing as general knowledge about clean eating grows, interest in paleo, etc. Fingers crossed he can continue.

Glad to know your daughter is doing so well.

 

[Judy1000]

Optimistic - so great that your son is in remission! I understand that enteral nutrition is really effective and way more popular in Europe. I love that your doctor could work with you on that. Yes, paleo recipes are super for Crohn's! Totally sympathize about the pizza, though. Have you seen Sami's bakery? They have a millet-flax pizza crust - don't know if you guys do goat cheese, but there are possibilities. We have tried other millet-flax products from Samis and they were great (but we generally just go for plain old brown rice or quinoa these days - those work for us now).



Lady Organic and Optimistic,

When we first started out, we used The Maker's Diet and SCD as starting points, but quickly had to adjust both for inflammatory foods in each (had to take out grains, dairy, grape juice, and more). Plus I was doing other research and reading and making decisions based on that combined with food journal records.

Basics (off top of head) -
no grains at first
no potatoes or corn
no processed foods
no sugar or sugary fruits (except bananas)
no dairy - later introduced aged goat cheese and goat yogurt - great stuff
what we could afford of grass-fed beef for better omega 3-6 balance
homemade beef bone broth, chicken-foot broth (totally freaked people out when I missed a chicken foot and it ended up in the soup - but supposed to be more of an honor if you are a dinner guest in Peru according to my friend who lived there!)
organic eggs

basically, if you could pick it or kill it it was OK. If it came in plastic or had added ingredients,...no. I made almost everything from scratch (but I like to).

It was really easier to look at what she could have, so she kept a food journal with a food list in the front and daily notes about what she ate and symptoms on the following pages.

It's amazing she was so disciplined - let's just say she was motivated by feeling really, really bad and by seeing symptoms start to go away as a result of what she was doing.

I probably need to write an article on this.

You can check out the grocery list and a very basic outline of what we did on my informational website, www.quenchingcrohns.com.

Pax,

Judy