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17 yo daughter with mild UC questions

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Ulcerative Colitis
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Posted 10/2/2013 3:18 PM (GMT 0)
My daughter was diagnosed with UC two years ago with a pediatric gastroenterologist at Rady Children's. A mild case from blood in the stool. No pain. No flare until recently. She was given a steroidal enema product to take every night during flares. She is back on the enema's for now. One thing that I have noticed is that she has become recently health conscience and wants to eat more fruit and especially leafy salads. Mostly the leaves as she does not like tomatoes and other items most would like in addition. We only keep Romaine around the house. When out at restaurants she eats salads like the Cobb or Caesar. What should we be doing as parents that control the diet for this condition? We are new at it but we want to be proactive.
Posted 10/2/2013 4:06 PM (GMT 0)
Salad doesn't bother her? I find that my body has a lot of trouble digesting lettuce (because of the cellulose maybe?). Diet is different for some many people...some find that going gluten-free helps them but gluten has never bothered me. It's kind of tricky at first to really pin-point things to avoid and things that don't cause any harm. I would suggest keeping a food log and a log of BMs (I use the app GI Monitor for the BM tracking - there might be better ones out there though).
It can feel overwhelming - I've had it about 2 years and I still feel confused and overwhelmed at times. Good luck!
Posted 10/2/2013 4:11 PM (GMT 0)
I think salad is bothering her as she is now in a flareup with bleeding. She just recently started eating salads routinely.
Posted 10/2/2013 4:13 PM (GMT 0)
Diet for UC'rs is very individual. There is no advice anyone can give you which is true in everyone. Often what one eats makes another worse and vice versa. You kind of have to feel yourself out. For me I have to watch fibers, fruits and fruit juices, nuts and raw vegetables. Lactose intolerance is common in many UC'rs but it doesn't bother me at all. Roughage is usually very hard on the GI system.
Posted 10/2/2013 5:39 PM (GMT 0)
I agree that salad is something she may be able to eat sometimes, and not others. But I am bothered by the treatment plan she got from her gastroenterologist.

Steroids are not for long term use. She would do much better to use a mesalamine enema. Also, was she diagnosed with a full colonoscopy? Are you sure that the inflammation is limited to the distal colon? I would think that an oral mesalamine would help keep her disease in better control. She should continue to use her mesalamine even when she's not flaring to maintain a good remission.
Posted 10/2/2013 5:50 PM (GMT 0)
I agree with Kaz. With diagnosed ulcerative colitis, she should be on a maintenance anti-inflammatory drug such as mesalamine. Do you know how much of her colon was affected? If it was just the rectum, enemas or suppositories should suffice. If not, then she probably should be on oral medication. (Many times teens are put on oral medications also when they won't use rectal meds.)

After two years, it's time for a repeat colonoscopy to see how she's doing. It is possible for inflammation to be going on with few symptoms, then to suddenly break out in a massive flare. Active untreated UC can lead to involvement of more colon and increasing difficulty in controlling it.

As for diet, we do vary a lot in what we tolerate. One consistent is that most of us are bothered by high-fiber foods such as lettuce. I find that even in remission I can eat salad maybe once or twice a week (dinner salads, not my beloved enormous meal salads), but if I eat more I will have pain and loose stools. I know it's hard to give up, but too much fiber is like eating nails for us.

Your daughter would be more than welcome to join our forum and participate herself. We have a lot of twenty-somethings who could provide support for her.
Posted 10/2/2013 5:55 PM (GMT 0)
Ditto kazbern and Judy2. If you want to be proactive at treating her UC, she should be on maintenance medications, even when she's not having symptoms. While this won't guarantee that her UC will stay mild, it certainly will increase the odds that it will.
Posted 10/2/2013 7:26 PM (GMT 0)
Since your daughter is eating salads, that might interest you:

Still in Remission from Spinach/Sunflower Seeds 3 Years Later

I have discovered something that I think will help you too. PART 1
Posted 10/2/2013 7:54 PM (GMT 0)
I eat salad almost daily as well. I just use Iceberg lettuce as that was recommended to me as the lettuce that puts the least amount of strain on your digestive system. I have had no issues with it, but have not tried any other types yet.
Posted 10/2/2013 8:01 PM (GMT 0)
I really appreciate the responses here. She is on the Enema described here but she has only taken it when she is having a flare then goes off of it. Also she is currently taking Accutane 40mg for Acne. The pediatric dermatologist and the pediatric gastroenterologist are working together in regards to that drug regimen. She will be on it for another 4 1/2 months. No side effects so far in regards to what are the normal side effects to Accutane. I will see if my daughter will join the forum as it will be her best source of information for her condition.
Posted 10/2/2013 8:13 PM (GMT 0)
hey warren - sorry your daughter and you are having to deal with this - i'll add another vote for fgirl,judy,and kaz's words -

when was the last time she saw a doc ?

and agree that eating is very individualized - I do great with salads - I wouldn't put the blame on them just yet - could be anything or nothing that's causing the issues -

fyi - for me, it's take almost 3 months of consuming gluten before the shiiit hits the fan -
Posted 10/2/2013 8:17 PM (GMT 0)
She saw the Gastro last week and she got additional mesalamine enemas.
Posted 10/2/2013 8:52 PM (GMT 0)
Accutane ? yikes !
Posted 10/2/2013 8:55 PM (GMT 0)
Man. I would really rethink the Accutane. Did she develop UC after being on Accutane? There are tons of lawsuits and information on Accutane causing UC.
Posted 10/2/2013 9:41 PM (GMT 0)
She had UC before the Accutane. The Gastro and the Dermatologist do not believe that Accutane creates UC. No studies have ever proved a correlation. UC presents to teenagers that have taken Accutane because many teenagers have UC symptoms in their teens either way. Actually there is a belief among pediatric dermatologist that it is the acne inflammation that starts the UC inflammation process.
Posted 10/2/2013 10:23 PM (GMT 0)
Hmmmmmmmmmmm. That sounds logical to some extent but I could have sworn that people were actually winning lawsuits against Accutane for causing UC.
Posted 10/2/2013 11:51 PM (GMT 0)
Eeek on the Accutane, but you have to weigh the pro's/cons with your Dr. team. I also back up an oral mesalamine and rectal mesalamine even when in remission. Using the mesalamine enema even 2/week supposedly helps keep a remission longer (although of course no guarantee). I would like to make sure her UC stay mild in all ways we can control. Also does she take probiotics? This is helpful for many of us. Also fiber such as Metamucil can be helpful. If she decides to try those things, make sure to go nice and slow to build up.

Diet doesn't matter for me, but does for others. This darn disease is so individual and unpredictable. I hope she feels back to normal soon!
Posted 10/3/2013 1:53 AM (GMT 0)
Gary, you're right there appears to be lawsuits against Accutane causing IBD. I would definitely think twice before using it despite what you're doctors say about it not causing UC. Unless it is pulled by the FDA they will still prescribe it even though it may be causing harm. You have to do your own research and not take the doctor's word for it.
Posted 10/3/2013 3:18 PM (GMT 0)
Accutane is a 6 month application and then one is done with it. Ambulance chasing lawyers can sue for anything. The science does not prove that Accutane causes anything more than excessive dry skin. My daughter had mild UC two years before the Accutane and had her 2nd flare a month before the Accutane was prescribed. The Dr. Put her on the lowest dose of 20mg as a starter. Normally one starts at 40mg and stays at 40mg for 6 months. The concept is that Accutane closes the sebaceous glands in the Derma that causes moderate to severe Acne and they don't reopen after the medication stops. My daughter did not have a flare after the first bleeding incident for two years ago until recently and I believe the trigger was her choice to eat healthy which consisted of less meat in exchange for an evening diet of dinner salads mostly consisting of leafy lettuce.
Posted 10/3/2013 3:23 PM (GMT 0)
She has also been spotty with the enemas going off of them in this second flare when the bleeding stops after a couple of days. Now I have her off the salads and taking the enema's as long as she is on the Accutane. She see's the gastroenterologist in February for a checkup. Any comments about popcorn? I am trying to get her off roughage except for Raisin Bran.
Posted 10/3/2013 3:24 PM (GMT 0)
btw: she is reading the comments and my join in under this username at some point in time.
Posted 10/3/2013 4:41 PM (GMT 0)
popcorn is horrible for some, but everyone is different. She can keep a journal to see if there is evidence of intolerances that show up.
Posted 10/3/2013 6:04 PM (GMT 0)
Popcorn is bad for most UC'rs. Not only does it contain some hard shell pieces but it is also high in fiber, which harms many UC'rs.
Posted 10/3/2013 8:00 PM (GMT 0)
So I've been on the Specific Carbohydrate Diet (SCD for short) for two years. Started it surely after I was diagnosed (months after symptoms) and I believe the science backing up this diet shows that there is SOME combination of the legal foods that will agree with your daughter. It's unbelievably strict. Something that most kids will probably resist. But it's crucial that she follows it diligently. Wean her to few foods that all agree with her, then slowly add one food at a time in 4 day increments. If she's not on a consistent diet, you won't be able to identify what foods trigger it. For me, my stress level and sleep patterns affect my UC a bunch. As far as diet, salad (and most uncooked greens) doesn't agree with me. I eat lots of eggs, bananas, larabars, peaches, avocados. I find it really important to chew my food really well, too. Sounds silly, but rushing only means your gut will have to do more work.

Good luck
Posted 10/4/2013 1:12 AM (GMT 0)
Salad also bothers me, but I find that if I eat it in very small portions with a big glass of water or decaf tea I'm fine. Also, adding something fatty to it like avocado or olive oil helps me digest it.
If she is eating a lot of fruit, it might help her if she eats the fruit as a snack and not with a meal. It's usually easier to digest fruit when you eat it on it's own rather than with your lunch/dinner/breakfast. I have also read that fruit is easier to digest when you stick to one type in one sitting--so a fruit salad would be harder to digest than a banana.
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