Frustrated Mommy of Nine Year Old Girl with Colitis

I wonder if the cramping Rose is having is from her pentasa? She’s been on it almost a week. We started dycyclomine (10mg 3x/day) yesterday. don’t know if it’s helping. If she has much more than homemade juice gelatin or shakeology and maybe an egg for lunch she’s in agony.

Her stool is fairly normal (I’ve been giving her myralax so it won’t be to firm). At my wits end. She’s been to one week of school and that’s it! Anyone with experience and annoyance with pentasa?! We had her on sulfasalazine prior to that, would it be easier on her system to go back. I also have her on 15mg of prednisone. I have got to get her back to school. I only get a happy Rose midday, morning and night cramping :(. Rambling…

Thought and ideas and prayers would be much appreciated. Thankyou and God bless!

Hi Suzie,
I have UC. I do have two children but they do not have UC. As a mother I can only imagine how difficult it is to have a child with UC. Homeschooling seems like a great option to take any stress of off Rose if you can swing it. I know that’s difficult too.
I’m sure you have done some internet research for recipes for Rose, but here are some SCD diet websites that may be able to help. One is a resource for parent and recipes for kids, the other for Meat ideas.
Best of luck to you and I hope Rose starts to feel better soon.

http://scddiet4kids.wordpress.com/about/
http://www.scdiet.org/2recipes/meat01.html or

Hi Suzie,
My 12 yr old also has UC.
He is well as can be expected at the moment.
As well as his Pentasa I give him Calcium with Vit D to help his bones ,more so during times on Prednisolone .extra virgin olive oil and glycosalamine( I hope that’s how you spell it.During a flare up I make him follow a low residue diet,which seems to help.He is also prescribed ProCal Shots to help maintain his weight .Everyone is different so it is trial and error to get something that works for each individual .
As for home schooling my son looks forward to as he says “Being Normal” and going to school when he can is one of those things.
As parents I know I carry the burden of what did I do to make my child have this horrible disease .We all do what we can to keep things “Normal”. and try anything to get us there.
Good Luck
Jackie x

Kim,

My heart goes out to you and Rose. The colon can heal, but it heals slowly. I hope things get better. I will share what I have learned here.

I use L-Glutamine and Organic Extra Virgin Olive Oil as well as Jackie & Giovanna.

I have a few other tricks that work for me- after years of being my own guinea pig ; ) because I just didn’t want to take the steroids and other meds anymore. I will share my solutions here with a recent story.

when I had my first flare, it was horrendous. It was blood transfusions/steriods, not being able to walk or talk,… the whole nine yards…..

My doctor told me I had to go on remicade for life or I wouldn’t make it. I researched what remicade would do to my body and said no. That day, I researched why South America/South East Asia/Asia & Africa do not have Ulcerative Colitis/Crohns, and why Americans and Europeans (of any race) do. I graduated with honors from a research program at Harvard – so my research was thorough.

I eased my body into a diet that people in these other countries eat when they get colon symptoms like we do. I thought, why not? It is worth a try – especially since there are few people in those countries with UC or Crohns.

I also researched homeopathic solutions proven to work (for many people) based on Western scientific studies.

These solutions work for me, but they may not work for everyone. I believe that they will work for most UC/Crohns sufferers though, because I healed my colon using these solutions – and my doctors have told me I recovered from severe pan colitis, and they couldn’t determine if I had pan colitis (my entire colon) as well as Crohns at the same time. Not sure if that’s possible – but it didn’t look pretty.

I decided to keep it real simple. Some of these things cannot be taken during a super flare, but you can try small amounts and ease into them.

As I eased out of my meds, I eased into 100% organic foods and drinks. Why add more chemicals to the chemicals in our meds when we can just eat organic? I couldn’t afford to buy all organic, so I grew organic kale & other veggies in my backyard. I highly recommend this.

Every morning I would make a “super shake” containing a super ripe plantain, lots of organic wheat grass juice, probiotic kefir yogurt, organic apple, and a LOT of organic turmeric juice and/or organic turmeric powder.

I would drink this shake with my L-glutamine and Quercetin/Bromelin supplements in the morning. Why? Because it has been proven in clinical trials that the combination of Quercetin/Bromelin & Turmeric provide the same effect as Prednisone!

Bingo! When I learned that, I felt like I won the lotto. I learned that I could heal my body and keep it from being “inflamed” without Prednisone and without all the side effects! I did this slowly and over time, and it worked. I chopped those prednisone pills into smaller and smaller pieces, over a long, long time,… as I increased my intake of turmeric/bromelin/quercetin.

I also ate a very particular diet.

I bought lots and lots of bitter melon (very hard to find in America – but try in Asian supermarkets if you don’t have Berkeley Bowl Marketplace like I do) and I learned how to eat it every day and every way – except fried. At first, I could only eat it steamed or boiled. It’s hard to find organic, so you may have to peel the skin off. After that, just slice it like a cucumber and steam it with a little garlic, salt & pepper.
Bitter Melon will heal the colon like nothing else. Make sure to include the seeds – because they are the most healing part of this vegetable when it comes to healing the colon.

I also bought lots and lots of plantain. The green ones are healthier than the ripe ones, because they have more nutrition and less sugar. I sometimes can’t deal with the taste of the green plantains, so I eat the ripe ones sometimes – even though they arent’ as good for me. Bananas – don’t bother – they are far less healthy for you.

Why plantains? because they are probably the healthiest fruit you can eat to heal your colon. Did your doctor ever give you potassium pills? Guess what, Plantains have more potassium than most foods on the planet. They also prevent and stop diarrhea, they have more vitamins and minerals and nutrients than most fruits on the planet earth but without all the sugar and acidity. They are VERY popular in the countries without UC or Crohns, and those countries also eat a LOT of turmeric.

So, I put turmeric – LOADS of organic turmeric – on almost everything I eat and drink. I put it in my tea, my coffee, my organic rice, my organic morning eggs,… everything. You have to add organic ground black pepper to turmeric or it isn’t very effective. Don’t use the plastic pepper grinders – because they just grind a lot of plastic into your food. I checked this out. Plastic is really bad for UCers.

Ok,… so do I like the taste of these foods? Actually no. I am not a cook, and I wish I like the taste of green plantain, but I don’t. I don’t like the taste of turmeric at all! But, if it’s my palate or my health, I choose my health. After awhile, these foods do work and I was able to be in remission for a year and a half. Heck,…. after 6 months of this, I was feeling great…. athletic even…. I shocked my doctors and they think I’m a miracle. I’m not a miracle, I’m just a crazy researcher who is willing to eat foods I don’t like the taste of so I can feel better.

I am not “totally” healed. I still get super stressed out from super stressful life events and fall off the wagon (eat lots of food I know will get me sick) – and then I have to get back on the strict organic: shake/quercetin/glutamine/turmeric/eggs/bitter melon/plantain/kefir yogurt diet again for a few weeks to get better.

I also drink around a quart or more of organic plain kefir yogurt – goat if I can get it.
I like organic avocados too. As I recover from flares, I add more and more organic vegetables and fruits – as raw as possible (sometimes juiced) or just steamed. I also eat lots of wild red salmon. Did you know that Omega-3 oil supplements are not proven to have any beneficial effect on health? Only fish with Omega-3 have been proven to have great beneficial effects on our health – especially as an anti-inflammatory healer. I eat steamed/broiled (never fried) wild red salmon at least twice a week or more. I also eat organic red meat when I’m in a flare – just for the high quality iron it gives me. When I’m not in a flare, I do not eat red meat – ever. I prefer bison – because it is the highest quality red meat available. I only eat it if I can cook it so it is super tender, and I chew it a dozen times or more – because any tough meat will send me into a flare.

Did I ever get so stressed out that I got another flare? What did I do about it?

My cousin just passed away a few weeks ago. We grew up like brother and sister. It hit me hard – real hard. I was already cheating on my diet and very stressed when I found out he passed away. The night after I learned he was gone, I was taken to the hospital – I got my first serious flare in 1 1/2 years. The doctor immediately gave me a large Rx for prednisone. I calmly told her I would up my dosage of asacol/canasa – no problem – but I would not take prednisone unless my own homeopathic solutions don’t work.

What am I eating right now? You guessed it – a lot of food that doesn’t taste very good to me – probably because I don’t know how to prepare it – but I am getting better and better every day. Within a week, the diarrhea disappeared. Within two weeks, the nausea & blood lessened, and this week I am almost tempted to start cheating again… I am starting to like the bitter melon, but I really am tired of the green plantain!

; )

Hope that helps! Please don’t eat or take these things without your doctor’s approval – everyone is different. I don’t have any food allergies of any kind, just plain old UC/Crohns. I always follow my own loose interpretation of the SCD diet as well. SCD is great.

Here are some links to some REAL research related to my healing solutions:

http://www.farrlabs.com/study-combi-curcumin-quercetin-oxyq/

http://www.sandiegospinedoc.com/turmeric-bromelain-and-quercetin/

http://www.researchgate.net/publication/6976408_The_antioxidants_curcumin_and_quercetin_inhibit_inflammatory_processes_associated_with_arthritis

Quercetin – A Flavonoid With Super Properties
Quercetin is an important member of a class of naturally occurring plant pigments known as flavonoids. The distinctive red color of some wines, onions and apples is due to the presence of quercetin. The latter two are particularly rich sources of the compound, as are black and green teas. It is also interesting that quercetin serves as a basic building block for many other members of the flavonoids family.

Along with other antioxidants, quercetin fights the damaging free radical molecules that are a major cause of aging and degenerative disease in modern Western societies.

Studies on Quercetin Show Much Promise
Several population studies have linked a high intake of quercetin and other flavonoids to a reduced risk of certain disorders. Research results published in Surgery in 2002 showed that the antioxidant activity of quercetin reduces the build up of a key component of atherosclerosis. This supports the findings of a large scale Dutch study of 5,000 adults which linked a high flavonoid intake with a reduced heart attack risk.

A 2001 study by the prestigious Mayo Clinic found that use of quercetin may be a new breakthrough in the treatment of prostate disorders. A report published in December 2004, showed that quercetin is also effective in treating chronic prostatitis. Lead researcher, Dr. Daniel Shoskes, said, “These impressive findings should offer hope to the millions of men who suffer from this poorly understood and painful condition, as it provides a new option for doctors who’ve been frustrated by limited treatment choices.”

While numerous studies have been done, more studies are necessary to establish specific health benefits.

Quercetin has been studied scientifically for over 30 years and during that time it has proven to be not only a highly effective natural supplement, but a safe one as well.

You can look up the research on google for scientific studies on plantain and bitter melon as well.

Here is a great scientific study proving how bitter melon can help cure colon cancer:
http://www.readcube.com/articles/10.1155/2013/702869?locale=en

http://www.kucancercenter.org/about-us/news/therapies-for-colon-cancer-naturally-speaking

I really hate hearing of anyone being diagnosed with this misery. It’s even worse to hear of children contending with it. I think home schooling for now, may be a very good idea. Also I see others have suggested the SCD for food ideas the GAPS diet is similar and has a good website too, you may get some good diet related info there. I think the SCD website has a link to a site specifically for children on the diet called pecanbread.com.

I’m now seeing a naturopath and she has me on a back to basics diet. Everything has to be either liquid or like baby food. I hope your daughter improves soon xxx

Oh hey, how did you find a naturopath Juliet? I’m sure a dietician would be helpful as well. Can everyone also describe there discomfort? Rose is only nine so she still has a hard time telling me about when she is in pain or feeling yucky. Gas or just sensitive gut? Opinions please :).