Hi. My ten year old daughter Rose has uc. We live in Utah in the US. I am at my whits end and need a breather :).
Stop the Bleeding
We’ve been managing her symptoms for the past nine months or so with scd diet.
Last June Rose had a painful poop that followed a couple hours after a movie and some popcorn. Two months later the same thing happened with a can of pineapple. The bleeding may have started back then. I have learned so much in the last year, yet i still feel so clueless.
We tried trusting our doctor, but the medications he tried had horrible side effects. I think prednisone was unnecessary at the time. Pentasa gave her stomach pain, and Balsalazide gave her a horrible cough- may have damaged her esophagus and caused her asthma. We went back to good old sulfasalizine.
We thought the asthma was bronchitis and gave her ONE dose of ibuprofen because she was in so much pain, which gave her an ulcer. We are hoping that her ulcer is mostly healed. She has had good poop, but we still are seeing blood on her poop and in the toilet. If she has more fiber there is more blood. We are wondering if she might have an internal fissure or hemorrhoids.
I am going batty. I think the bleeding has been there all throughout this whole adventure. Her tummy hurts when she has to poo.
Should i just blend up all of her foods for the next little while?
Some of her poop was looking undigested. Sometimes she is farty, but it doesn’t smell. Should i just put her on an insane fast of chicken soup and scd yogurt? I tried cabbage juice, carrot juice.
my daughter still having a good time:)
She needs food, i hate experimenting on her like a guinea pig. She is such a good kid and has been so patient with the ups and downs. I really hope to be able to help her heal over the summer so she can go back to school. She has missed soooo much. Any similar stories, thoughts, ideas and prayers would be truly appreciated. Thank You.
Signed,
One worried mom *sigh*
-Suzie B
submitted in the parents & friends of UC’ers section of iHaveUC.com
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!
My recommendation would be to not be taking any of the SCD yogurt if there is bleeding present. Too often I hear from others that symptoms seem to get worse when taking the yogurt while blood is still visible (and its mighty easy to start eating lots and lots of that stuff since it tastes so good). I’d personally rather go with lots of chicken soup (no noodles of course)
I haven’t done the blending of foods myself, but no harm if she’s ok with that. Or, maybe just making a little game of making sure to chew at least 50 times before swallowing food. Sounds crazy, but I do it myself alot and I think it helps with making digestion easier farther down the line. Here’s another post from way back in June of 2010 about bleeding. What’s interesting are some of the comments especially a woman’s comment about foam enemas (Booby’s her name). Might be a new idea if you’re up for trying another med/treatment: https://ihaveuc.com/how-long-will-you-bleed-when-you-have-ulcerative-colitis/
wishing you two a fun summer with some much needed relax time:)
-Adam
Ha! I love that you put booby
Hi Adam,
My daughter was diagnosed with pancolitis in oct 13. She is 8 and recent scopes in May 14 and MRI and biopsies confirmed she has healed on the right side but has got some colitis on the left side. She has been on a rollercoaster since diagnosed and been on pred twice. Since the major relapse she had in march 2014 Where the prognosis was surgery, I have been combining natural therapy, diet and medicine -salofalk only and seem to control the symptoms. However she has had a slight flare due to taking calpol which contains sorbitol and has been bleeding from the rectum, apart from the suppositories is their anything I specifically need to avoid until symptoms reduce.
Thanks
I’d avoid all dairy, grains, and refined sugars until bleeding stops. And, maybe most importantly, if its possible to determine stressful situations that your daughter is going through(probably easier said than done) but I’d try to eliminate or reduce those times/things as well. Life can for sure be stressful, even for an 8 year old.
I am 42 and have had UC for over 27 years…I had had great success with blending up the foods, especially when flaring. I have a Vitamix and it goes everywhere with me. When I am really sick and having a horrible flare, all of my meals are blended…smoothies in the morning, soups in the afternoon and evening. I recommending giving it a try. As my flare settles a bit, I do try to introduce some solid food, but most of the time I never try solids in the morning and always have a smoothie.
Could you give more examples or recipes please?
Hi Suzie,
I do not have formal recipes, but I can give you examples of what I make. Bottom line, I was not tolerating much of anything and found that if it was not solid, it did help a bit. My goal was to pack as much nutrient dense foods into what I am trying to put into my body, since it was so minimal.
Smoothies: I do a combination of the following:
greek yogurt (about 1/2-1 cup…depending on how I am feeling)
fruit nector (1/4 -1/2 cup)
frozen pineapple, mango, & peaches (I do fine with these)
cooked, wilted greens (combo of spinach, kale, chard)…less than 1/2 cup
fresh fruit (bananas, strawberries, etc)
Mix until smooth. Vary to your taste. When I am in the height of a flare, I cannot tolerate even cooked greens, but trying to get nutrients in my body.
Soups:
(1) Chicken/Veg Soup
Fill a stock pot with chicken stock and chopped carrots, celery, onions, & potatoes. Cook up veggies until soft. For protein, you can add in chicken and poach it in the liquid as well. When all cooked, put in blender (veggies, meat, and stock) and blend until smooth.
(2) Roasted Veg Soup
On a sheet pan, roast the following: sweet potatoes, red onions, butternut squash, and green/yellow squash. I use a very small amount of olive oil to roast and season with salt, pepper, and fresh rosemary, thyme, and parsley. After they roast and get soft, put in the blender with chicken stock and blend until smooth.
hope this helps….good luck!
We have backed o ff on the yogurt because it was giving her earaches. We just started doung the vitamin e enemas with some coconut oil as well. Ill try to keep you updated. Thankyou!
Hi Suzie,
I have had uc for over 35 years and gone in and out of flares. One thing that I find the most helpful and easiest to digest is a shake product called Absorb Plus. It was designed for persons with digestive disorders and formulated by a woman who had Chrohns, Jini Patel. The product is tasty, easy to digest and gives the elemental vitamins and minerals, as well as L glutamine and many others. It can be ordered online or through specialty health food stores. I buy mine at Finlandia in Vancouver, B.C. While it isn’t 100%scd compliant! it has gotten me through some rough times when I need to be on an elemental diet, or need the extra calories for energy!
Comes in Chocolate, Vanilla, Berry Fusion and would certainly appeal to a young child!
Jini’s website is http://www.listentoyourgut.com, she has a lot of other very helpful advise as well!
Hi Suzie,
Here are some things you can try while your daughter is in her flare. Banana for breakfast. You can do a smoothie but you use almond milk throw a banana in there or you can do a teaspoon of cinnamon and teaspoon of honey. Baked potatoes, roasted chicken or homemade chicken noodle soup. I hope these help until the meds start kicking in. Good luck.
Barb
God bless you and your family, your daughter is beautiful and your story tears at my heart. I’ve been suffering with this brutal disease for 5 years and I always tell myself at least it’s my problem and pray my kids dodge the bullet. I can’t imagine your struggles with a girl soo young dealing with such a difficult disease and so much unknown. I have a descent juicer that helps during the worst times. Breakfast and snack juices my 3 kids love em too and they make their own when I got the machine out.Carrot, apple, lemon and grapes are the best! Also may wanna try ensure. I wish you the best, have you looked into Fecal transplants with a Peds GI?