Ulcerative Colitis Tips


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Frustrated Mommy of Nine Year Old Girl with Colitis

 Four of those beautiful girls are mine.  Rose is the one on the right.

Four of those beautiful girls are mine. Rose is the one on the right.

My name is Suzie. I live in the West Jordan, Utah, USA. I’m 35 and my nine year old daughter Rose suffers from U C. She had her first flare with blood and diarrhea in November of 2010. We believe it was do to a contusion she received when she fell out of her bunk bed and the ibruprophen may have exacerbated things as well. Then about 4-5 months later her first flare happened and she nearly had a blood transfusion. Scary!

Frustrated Mommy of Nine Year Old Girl with Colitis

My daughter Rose is nearly ten years old and has had Ulcerative Colitis for nearly three years. Her flare ups were happening once or twice a year, but this summer has been an ongoing battle. We thought we had things sorted just before school started, but then Rose downed almost an entire can of pineapple (while my husband and I were out on a date) because she couldn’t have popcorn (babysitter did a movie night). And then owie and more ups and downs.

Rose just had a colonoscopy and I’m worried that the clean out may have made her colitis worse. In her colonoscopy her doctor saw inflammation at the beginning of her colon and the end. She also had little white dots here and there. Anyway, within two days of her scope she’s been experiencing pain in the morning and at night, and feeling yucky. The pain seems to fade during the middle hours of the day. I’m going to put her back on homemade gelatin/jello and beachbody.com shakeology shakes. She seemed to be doing really well with those.

Rose has missed a month of school and I’m considering homeschooling her.

Please give me food ideas for her or how to make broiled hamburger exciting! Ideas? Advice? Help?! She has a good appetite and is hungry all the time.

She’s a really great kid. Please help me to help her!

The selfish part of me really misses my daily routine and tines for the day when I can return to my morning Zumba classes!

Rose is currently on four blue 500mg pentasa pills a day and 5mg of prednisone (we almost had her off of a taper, dangit, but our new doctor thought it might be helping to keep her flare down). And vsl#3 junior probiotic 250 billion little critters.

written by Suzie B

submitted in the parents of UC’ers section




14 Responses to Frustrated Mommy of Nine Year Old Girl with Colitis

  1. Suzie B. October 2, 2013 at 8:55 am #

    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!

  2. Katie October 2, 2013 at 9:24 am #

    Poor sweet baby. No child should have to deal with those things. I will keep your family in my prayers.

  3. Kim M
    Kim October 2, 2013 at 11:20 am #

    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

    • Sloane October 2, 2013 at 9:19 pm #

      Im so sorry! But i have a suggestions I make!! LDN- I can totally relate to her situation I have ha the same experience but this LDN made my UC go away without need for diet and without any blood or pain or flare in over several heavenly months! And I have no moon face or side effects like when I took prednisone or mesalamine( Apriso aka the devil) but yeah, check it out it gave me my life back

  4. Giovanna October 2, 2013 at 12:14 pm #

    Hi Suzie,
    My husband was diagnosed in 2011 and has been experiencing horrible flares since. As your daughter, his whole colon from beginning to end is affected. He was so sick that he went from 180 lbs to 126 in 2 weeks. He literally was starving to death. He was given a horrible prognosis by his gastro dr- either have a colonectomy or die. Well he decided not to have the surgery, not wanting the colostomy and decided to try to heal himself for the inside out. He is still taking apriso- UC meds- but we have also incorportated Extra Virgin Coconut Oil in his diet. It works as an anti-imflammatory and has done wonders for him. He has gain weight back- and is able to start eating things he was not able to and helps with his pain. You can find it at any local health food store. It looks like crisco in a jar. Your daughter can take a teaspoon every couple of days at first for the next few weeks then slowly start to increase it. The websites listed below will give you more information about benefits of coconut oil. Good luck and God bless.
    Giovanna
    http://www.coconutresearchcenter.org/

    http://www.healingnaturallybybee.com/articles/coconut9.php

    http://www.coconutresearchcenter.org/hwnl_9-4.htm

    • Kim M
      Kim October 2, 2013 at 1:43 pm #

      Thank you for sharing Giovanna!
      I will definitely try Coconut oil, I had not idea of its healing effects.

  5. Jackie October 2, 2013 at 10:40 pm #

    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

  6. Jackie October 2, 2013 at 11:56 pm #

    It is L-Glutamine not Glycosalamine it’s too early in the morning for my brain sorry x

  7. berklia October 3, 2013 at 4:18 am #

    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, β€œThese 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

  8. Richele
    Richele October 3, 2013 at 8:15 am #

    Hi Suzie,
    Ugh! As a mother of a 10 yr old (Skylar Rose) and 7 yr old (Ruby) I can’t even imagine how you must be feeling :( Skylar does have digestive problems, and I suspect they are food related, but her dr. doesn’t think it is UC and ruled out Celiac. I was diagnosed almost 8 years ago and I would never wish this disease on anybody. But a child! :( Breaks my heart to hear your story.
    Anyways, I have eliminated dairy from Sky’s diet and she is now working on eliminating wheat as well. It is a slow process but she seems to be doing ok.
    As I was reading your story I thought of this avocado chocolate “pudding” I make for myself. It’s gentle on the tummy and has coconut oil which as someone mentioned above, has anti-inflammatory properties.
    1 ripe avocado
    1/4 cup cocoa powder
    1/4 cup raw agave nectar
    1/4 cup coconut oil or milk
    blend it all up until smooth and creamy.
    I hope Rose feels better soon. Sounds like she is in very capable and loving hands.
    Best to you and your family,
    Richele
    So yummy and

  9. Juliet
    Juliet October 3, 2013 at 8:23 am #

    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

  10. Suzie B. October 16, 2013 at 12:36 pm #

    Whoo! That’s a lot to take in! Sorry I kind of dropped off of the planet there… My sister won a trip to Disney Land and invited her sibs to come. So you can guess where I was last week.

    After my Pentasa question I put Rose back on her Sulfasalazine and upped her prednisone to 15mg a day (she’d been on maintenance of 5mg for a while). What a change, I hate meds that make her feel yucky,I almost have my kid back! She’s also taking folic acid, 2 kid vitamins, and some calcium.

    Diet: For her diet we are basically going between Paleo (look up the book “Against All Grains”), and somewhat SCD and GAPS. Her digestive system is so sensitive. We basically have her eating homemade jello, peaches, shakeology shakes, fish, cauliflower, meatloaf made with almond bread (much like sandwich bread, it’s been a lifesaver), and softly cooked and peeled fruits and veggies. I need to look at Adam’s recipes as well.

    I think she is mostly healed, her rectum bleeds if I don’t soften her stool with myralax. Her only issue seems to be if she eats to much (pain, yuckyness), or if she eats to late in the evening (yuckyness, sometimes pain).

    I will look into all of your ideas. Thankyou sooooo much!! Adam please hang onto this thread for awhile as my printer is on the fritz!

  11. Suzie B. October 16, 2013 at 12:40 pm #

    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 :).

  12. Suzie B. October 16, 2013 at 12:51 pm #

    One more comment from my scatterbrained self… look up food grouping and alkaline foods. Eatpainfree.com or net or org, can’t remember which… I’m still thinking about this for Rose.

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