Daughter Diagnosed with UC

Arttillygirl, I am really sorry to hear about your daughters diagnosis. Was she diagnosed by biopsies? I am hoping the antibiotics wipe out whatever this is and that she gets back to 100% quickly but if you did in fact get a diagnosis by biopsy, you're going ot have ot be patient. If mesalamine (apriso, asacol, lialda) all give her side effect, she may be intolerant of this type of medication. She may do better on something like Colazal but some can have side effects from that as well. This illness is a lot of trial and error. The steroids usually wipe of symptoms pretty quickly. HOw long has she been taking them and what dose? Has the GI mentioned enemas?? Many of us use mesalamine enemas with luck. There are also steriod enemas. These types of medications are mostly helpful for rectal inflammation. Did they say where she is inflamed?

I tried SCD diet without any improvement but some see great results. I almost recommend doing one thing at a time. Right now, you're following the doctor's orders, taking medication. Wait and see if that works. Otherwise, you start this insanely strict diet and become convinced it's helping when really its the steroids and you deprive yourself of all the foods you love when it may not be helpful.

With bleeding it would likely help your daughter to follow a fairly bland, low-residue diet for a few weeks at least. That would essentially be boiled, baked, or broiled food like white rice, skinless chicken or fish, eggs, mashed potato, noodles, natural applesauce, banana, graham crackers, pound cake, farina or cream of rice hot cereal, puffed rice (cold cereal), white toast. Eliminate carbonated beverages & caffeine, go easy on citrus juices, fats, spice, sugars. Also, several small meals daily may be better tolerated than a few large ones. If you look thru the Website at Salix Pharmaceuticals Patients' Newsletter (Archive), you may find more helpful info on diet & meds for UC patients-- plus other subtopics. Best wishes! It definitely takes time to adjust meds & diet so encourage your daughter to have patience & think positively about her condition, also to rest as much as possible to promote healing of tissue. / Old Hat (32 yrs with left-sided UC; presently in remission taking brandname Colazal)

Sorry to hear that your daughter's joined the UC club. It must be especially difficult being in high school. I hope things will get better once you figure out what meds/treatment work best for her. I remember when I first got symptoms of UC, I thought I was dying. I went to my doctor after horrible diarrhea, weight loss and a tiredness I'd never felt before. I told them I though I was dying. They put me on an IV sfter telling me I looked like crap. At any rate, it took a long time and countless tests (including the ever-popular colonoscopy) to get a diagnosis of UC. Since then I've flared up and have been on several meds. Am currently doing well, so keep the faith. Hopefully your daughter will do ok.

My daughter too has been recently diagnosed. We are just finally starting to see positive signs of the Remicade / Steroid enema / Prevacid / Prednisone ( 40 mg) treatment working with the first time in 8 months she woke up only 1 time in the middle of the night to go the bathroom & it was just to pee!!! (we have been on this entire regimen for now 2 weeks)

Don't give up... sometimes it seems the meds just take a while to start working.

As far as diet, I have removed milk (only lactose free), and cook with little spice - kind of bland. NO PACKAGED FOOD AT ALL, only natural or cooked from scratch. I keep all dairy to a minimum. Dairy was the only thing I could define as a trigger before the hospital. Lots of water & natural juice I have found works too.

My daughter has wanted to be a chef from an early age & I have her back involved in helping cooking for herself & the family. It seems to help her relate what works for her in her flare ups & what not. I also found it seems to help her feel some sort of control with this whole UC thing. It may help your daughter too.

I agree with leaving out all the processed food and dairy and have it bland. Even if you don't go with SCD for your daughter, make sure everything is organic. If she still has diarrhea, cook all the food so it's soft. Don't have her have something which is hard (nuts, whole grains for example) because it scrapes and hurts her colon.

A good idea is to write a food journal every day. Write down what she ate, drank and how she feels (consistency of stools, if she has blood, mucus). This way you may be able to figure out fairly quickly what she can tolerate and what not.

She still has a lot of medical options. Remicade was like a miracle drug to me. Never give up the hope of remission.

Well the first med gave her migraines so we had no choice. The dr did wonder aloud if it might be related to coming off steroids. The second time we were just reporting in that there was still pain and bleeding so no panicking. I think she just thought if its not working it's not working. She's a pediatric gastronologist and although my daughter is 17 she said she could stay her dr.

Are you thinking we didn't give the second long enough?

Actually the first time I started asacol it was at the same time as 40 pred. I was on the 40 for three weeks because no one told me to taper, but when I finally did By going 30,20,10 stop in three weeks i felt really weird, headaches in the back, not sever though, spacy, tired. Nobody!!! Mentioned the pred. My gp took me off the asacol. Then I switched to Apriso, then lialda. Yes I think it could have been the pred, I would give the Asa longer, taper slower

Wait, are you saying your daughter is on 20 mgs total or 60 mgs total? 20 would be considered a low dose and 60 would be considered a high dose.

I also second the edamame as being potentially harsh. Also, how much fiber did the veggie patties have? They could also cause some issues.

And just random - have you gotten a note from the doctor for the school so that your daughter can go to the bathroom whenever she needs? Even if it's five times during a single class?

Know that it will get better! The worst is always when you are first diagnosed. They have found little evidence that diet has anything to do with putting you into remission, but it can help. What will help the most is finding the right meds to work for her. Everyone is different. Predisone is a miracle drug, but you can only be on it for a short amount of time do to all the hardcore side effects. Your daughter will most likely go on a maintenance drug and nightly enemas, it will get better and she will go into remission! She's in my thoughts.

Aww, that's great to hear! It's something I'm sure she will remember for a very long time!

For me diet had an impact on my symptoms.
It did not make the UC go away (meds do) but certainly reduced symptoms.

Sugary foods like biscuits/cake/sweets cause bleeding.
Especially biscuits made with oats or ginger. These make my poor colon bleed like a sieve.

I quit tea, coffee and caffeine in general. This helped my body deal with the medicine load better.

The alternative treatment route did not work for me (tried a multitude of treatments)

Sorry to hear about your daughter. I had UC symptoms on and off (mostly on) for 12 years, had many different drugs over the years. Found none worked as well as Rowasa for me. I had lived in Canada and 3 different states in the US while dealing with UC, so I had a variety of doctors. I always questioned them about diet having an effect; they all said no. Everyone's body is different, responds to different things, and severity of the disease has to be considered. But, I know what I would have my daughter try if it would ever happen to her, based on my success.....

I became aware of fungus playing a role in disease, by chance, watching a health show while living in FL. The more I researched, the more it made sense for me. I had been on antibiotics as a teenager, lived in a damp, mildewy home,... later lived in a house with flooding in basement, been on BC pills, drank lots of soda and ate (craved!) starchy/sugary foods (bread, potatoes, sweets)...all of which promote the growth of fungus. I decided to "experiment" with an antifungal diet as proposed, to determine if my UC symptoms could possibly have a fungal etiology. *(My doctor told me I would not feel any different from doing so.) Wasn't confident in the potential outcome, but I knew I should feel improvement, somewhat after a month or so, if I could stick to it, no cheating. Was kind of hard at the beginning giving up bread, sweets, but I still could eat from choices of meat/fish/poultry, pretty well all veggies (no corn- a grain, or starchy ones like potatoes) and berry fruits, green apples, whole fat plain yogurt. No grains, yeast, or processed food of any kind. No one was more surprised than me when after 2 weeks I noticed remarkable improvement...almost like someone flipped a switch in my body. *(Even my doctor berated me after telling him what I did. Said it was just a "coincidence" I got well and told me to keep taking more of his prescribed drugs. That I would be on them the rest of my life.) I continued on phase 1 of the diet for a month, then gradually introduced some grains back into my diet. Stayed on phase 2 for 3 months. Am still symptom-free/drug-free today...6 years later. I mostly eat whole, natural foods. I still don't eat foods with yeast and limit my sugar intake. Absolutely NO artificial sugar! I get to eat my bread, but it is yeast-free millet. I recommend reputable probiotics, as well.

Read the book "Wheat Belly" this summer and learned that people with UC many times have a sensitivity to gluten/wheat and not realize it and may show improvement after going gluten-free. (May be why I felt better when following my antifungal diet...no grains allowed). Decided to go gluten-free in Aug. and my digestive system has not felt this good in many years. I always had IBS tendancies even before my UC appeared and after my UC symptoms disappeared.

So many good people on this forum with good advice. Best to choose one thing, give it a fair chance to work before jumping into it all at once. I firmly believe, however, that diet DOES make a difference the majority of people. And, I do believe fungus is responsible for many of our diseases. Look at the meningitis outbreak happening right now. Fungus (there are over 200 kinds that can cause disease in man) can lurk in your body and grow slowly over many years before it manifests itself in the form of disease...even from antibiotics taken as a child. Fungus thrives on grains and sugar, around which the Standard American Diet (S.A.D.) -how appropriate!, is built. Become informed, do your research. Don't leave everything to your doctor. I would still be sick today if I had done that.