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My 6 year old's UC and diet

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Posted 3/21/2013 6:37 AM (GMT 0)

Hi, I am new here but you all seem very helpful.  I'm hoping you can help me figure out this maze of choices.  My daughter was diagnosed with pancolitis when she was 5, a year ago, and we got it under control through 5ASA and a couple weeks of steroid taper.  Remission was a year (yeah!) eating whatever she wanted (except lots of popcorn, nuts). But, she started flaring 2 1/2 months ago and we have not been able to get it under control through steroids, hospitalization with IV steroids (for almost a week), steroid taper isn't working, recently started Remicade per doctors recommendation.  Infusion seemed like it worked initially, but started waring off closer to the next dosing date.  She's had two now.

She's been on a low-residue diet since day one and we caught this flare immediately and started prenisone on day 2.  I'm about at my end of choices and we'd like to avoid surgery.  I know some have been happy with their surgery choice, but seems so permanent for a 6 year old.  I also don't want her on all these meds her whole life.  She's tried the SCD and a gluten free diet for a couple weeks each with no apparent success.  Has anyone had success with a high soluble fiber diet? Karen Hurd's website raves about complete UC remission through diet.  I'm a little nervous about stopping medication (except steroid taper) and wondering if I could be doing permanent damage by stopping med.  Of course I know I'm doing permament damage by keeping her on meds, too.  There's so much conflicting research, opinions, and testimonials out there, I just don't know the best course of action for her and I don't have a lot of time to keep trying something new every couple weeks!!  She's been in a severe flare for too long!  My husband and I cry in frustration at the lack of direction and the pain she's going through, trusting us for answers we don't have.  I hate to keep putting her through the ringer, experimenting on her!  Right now she's on a white rice diet only--so not fun when you're 6!  If it helps, it might be worth it, and eventually be able to add food in. 

ANY HELP IS APPRECIATED!!  Thank you!

Posted 3/21/2013 7:16 AM (GMT 0)
I am so sorry you are going through this. Have you tried probiotics? I was having purely liquid BMs and started VSL 3 DS and started to have firm stools and going way less times a day. Some health insurance will pay for it. Many people here take it but some people do not see as drastic a difference as I saw. I went so long without a BM I actually thought I might have a blockage but it wasn't an uncomfortable not going.

Also I now this would be hard with a 6 year old but you may want to consider rectal meds. These can be very helpful even if your whole colon is inflamed usually the part that causes the most trouble can be reached with an enema.
Hope things get better
Posted 3/21/2013 12:05 PM (GMT 0)
That's really hard to feel out of options when you see your child suffering. Unfortunately the medical options are very limited with this disease.

Alternative medicine-wise: there are many things you can try but with variable levels of success.
Have you tried the paleo diet? It's almost the same as SCD except no dairy but allows use of animal fats like butter. It allows pumpkin and sweet potato as source of carbs.
Have you tried probiotics, high dose? they have't helped me personally but they help some people.
For a list of things that have helped me please see my signature.

Some people, who don't respond to steroids, try antibiotic therapy. Maybe there is a coinfection keeping your daughter's inflammation going.
Posted 3/21/2013 1:35 PM (GMT 0)
Don't stop pred cold turkey and don't believe one testimonial - they are all a crock. Sorry your little one has to go through this.
Posted 3/21/2013 1:45 PM (GMT 0)
Ajaja,
I've been where you are and I'm so sorry you're going through this. You can email me and I can direct you to some support sites for parents who have children with UC/CD, including a site which focuses on alternative treatment if that's what you want to try.
I have never heard of a "rice only" diet - it sounds dangerous to me as she's not getting the vitamins/mineral/protein/fat her body needs. Can she handle bone broth and chicken soup? I would try that and see what happens. Unfortunately, this is a very difficult disease and sometimes results are not immediate. not that I'm suggesting putting her on a diet and "waiting it out" as there's no guarantee it's going to work. I can share our experiences with you by email if you wish. click on my name for my email address. I hope she's much better soon regardless of which way to decide to go. My daughter is more stable now but still there is a part of me which wishes I had pushed for surgery on day one. If she has to have it, there are many who are much much better for it.

Post Edited (killcolitis) : 3/21/2013 7:58:20 AM (GMT-6)

Posted 3/21/2013 1:48 PM (GMT 0)
I don't think anyone on this forum would suggest stopping meds in order to add some diet modification.

Member "killcolitis" has a young daughter in similar circumstance as you. Search her threads and try and contact her for ideas.

Diet is notoriously hard to get a handle on. You want to make sure she is getting enough nutrients. My suggestion is to forget named diets and keep a food diary and try and keep track of symptoms. Although you had no luck with gluten-free I would still eliminate gluten for the time being (no pasta, no bread, etc). It's not needed nutritionally if you have a healthy diet.

Good things to eat: chicken broth (homemade if possible), meat and protein (skip seafood for now just because it might be a problem while flaring), low starch veggies such as cooked spinach and carrots. Cook all vegetables to soft stage. There is a great cookbook called "Cooking for Isaiah", look in your library. Kid with multiple food intolerances and really good recipes.

I'd also skip almond flour/meal until she gets better.
SCD helps many but for me it had many foods my gut did not like.

Hope you can connect with killcolitis. It helps to talk with someone who's been there.

edit to add: haha I see kc posted when I did. glad to see.
Posted 3/21/2013 2:09 PM (GMT 0)
i'm with ima, only i would go a little further and eliminate all grains -

and avoid all nuts and absolutely no sugar -

kinda radical i know, but i think it's worth a shot if it keeps her off the big meds and out of the or -

and i would think of this as a life change, not a quick fix diet -

sorry you all are having to deal with this - definitely sucks !

Posted 3/21/2013 2:14 PM (GMT 0)
I personally don't believe diet to have anything to do with UC... yes, one can gain some measure of control over their symptoms thru diet, but that's it- diet will not cure active inflammation, will not cure UC. I can understand your fear of the big-gun meds, but why would you want to sentence her to a lifetime of extremely restrictive eating? For most children who'v eundergone surgery, it's a quick healing process, & I've yet to read from a parent who wishes they had not done it. I'm sorry for your daughter... this is hard enough as an adult. If the biologics & steroids aren't doing the trick, surgery may be her best option. Don't rule it out, is all- I'd advise speaking with a pediatric surgeon ASAP, just to make sure you are 100% informed before you make any decisions.
Posted 3/21/2013 2:20 PM (GMT 0)
Ajaja, I am sorry to hear about your daughter. It's bad enough for adults to suffer with this illness, I can't imagine what it's like for a child. As far as mainstream treatments go, there really aren't that many available. Once you try mesalamine, steriods, immunesupressants and biologics, you've tried all of the recommended treatments. After that point, most doctors will tell you surgery is your best option. Things are even more difficult in a child because it's worrisome to have a young person on some of these drugs.

I think it I were in your shoes, I would make sure she's had stool tests and I may try antibiotics. Sometimes there can be UC and a bacteria and this makes treating the UC very difficult. I would also make sure that it is UC and not Chron's with as much accuracy I could. I have seen a lot of cases of UC in children that are extremely virulent, and unfortunately, often surgery ends up being the best solution. On the positive side, there shouldn't be any meds required after surgery, it's pretty much a med-free life, with the exception of an antibiotics if you had pouchitis every few years (which doesn't happen to everyone). I am not saying to have surgery, please just keep an open mind. When you're ready, speak to some surgeons, you may see that it usually has a great outcome. Children's bodies adjust quickly to surgery and heal fast. It's not the worst thing, it's certainly better than having active UC for a long period of time. I used to be extremely scared of surgery but since reading and seeing people here go through it without regret, I am much less scared. Of course, we all hope we are able to get through this flare up, and that it's the start of a LONG remission where we don't think about UC for years and years. I was in a really bad flare up where I was feeling like I would never get better and eventually I started 6mp and improved. This illness is unpredictable and very frustrating. Try to think positive, it helps. Another thing, diet did absolutely nothing to improve my personal condition. I believe different people respond to different treatments and if diet doesn't work for you, it's a lot of work and struggling for nothing. On the other hand, if you see even minor improvements with it, you should try to figure out what works and stick with it.

There is a support board for parents of children with IBD here:
[url]http://www.dragonpack.com/ibdsupport/parents/[\url] you may want to check it out.

Please keep us updated.
Posted 3/21/2013 2:57 PM (GMT 0)
"I personally don't believe diet to have anything to do with UC"


just because you believe something, doesn't make it true -

you can say things all day, doesn't make what you say right -

sheesh !

life would be much easier if i could go through red lights whenever i wanted - but i don't really want to kill myself or others -

i would stay much warmer in the shower on cold winter mornings if i would take an electric heater in with me - but i like to still be alive when i'm done getting clean -

i choose to limit my diet and avoid drugs and surgery - it's ridiculous to think that because i don't eat grains and sugar that i'm starving - imo, at least half the people in the world would be much happier and healthier if they'd just use a little restraint in their diet -

is it a choice ? absolutely !

but to say food/diet has no relation to uc is just ludicrous -

 

Post Edited (soystud) : 3/21/2013 9:09:02 AM (GMT-6)

Posted 3/21/2013 2:59 PM (GMT 0)
Has your daughter been on total parenteral nutrition yet? This approach (eliminating all food except liquid nutritional replacement given by NG tube or button) has been shown to be as effective as steroids in inducing remission in kids with Crohn's. Not sure about UC.

Is her UC diagnosis firm? There was a parent on this forum a couple of years ago whose young child ended up with a colectomy. If your DRs are not certain it's UC surgery becomes problematic because Crohn's is not cured with colectomy. You can search for Chris's Colon I think to find those old posts. That boy's surgery was ultimately successful for him, but it was a rough, rough time.
Posted 3/21/2013 3:38 PM (GMT 0)
A few quick thoughts Ajaja (you can do further research on your own if you wish - I have to run ATM)

- EN (enteral nutrition) does not work for UC, works very well for small intestinal crohn's and less well for crohn's colitis but still worth a shot. I don't think TPN is necessary - they usually only use it when someone is very very weak as it's very hard on the liver. EN, however, can be taken by mouth (drink the formula - there are many, most are disgusting) or can be given through an NG tube. I've tried it many time with many formulas for my daughter, and it's always made her worse, which her GI said is common with UC. This didn't stop me from trying it - look at the research and make a decision.
-Diet - I don't know how severe your daughter's case is - my daughter has mod-severe pancolitis (almost the most severe). Her GI is very cautious with surgery as it's unfortunately more likely that children with UC will end up with Cd in the future. They don't know why this is. This is the only reason I did not push for surgery at the very beginning. However, if she has a solid UC diagnosis (my daughter does too but our GI keeps stressing the age issue) then it may be the way to go. If you have time to play around with her diet, look into GAPS and seriously look into doing the intro diet and introducing foods as they recommend. I find SCD is too confounding - it's emphasis on dairy (yogurt) and nuts is counter productive more many IBDers and this is one of the main reasons it doesn't work. I know it's a hard diet (we've done it) but it's worth it if it works as it is a healing diet. My daughter is on Gaps/paleo and I can share ore about that if you wish. SCD helped a little but not enough and she flared badly. I now know a little more about diet and I'd be able to pass on what I've learned if you want.
3. antibiotic - yes,I would try them. Our GI is one of the best ped GIs in the world and she is all about trying abx before immunomods in the treatment of UC - there are a few she uses and we've tried vancomycin, flagyl, cipro and rifaximin. Also please look up fecal transplant, FMT, HPI. I know a few kids who were severe who are in remission as a result of this. We tried it too but it didn't help my daughter.
4. Diet vs surgery - it's a hard choice considering chidlren are not adults - they bounce back from surgery fast but are more likely to end up with a crohn's dx. Personally, the diet is hard socially but it is a very healthy diet and I do know children who have been "cured" by it - this means, several years eating this way and ultimately no trace of IBD on tests and a return to a normal diet (though most do stay away generally from processed junk). I personally am trying to identify and heal my daughter's IBD as I believe the problem will migrate and her immune system will find another thing to attack if her gut is not healed. It's hard to do (understatement in our case), very very expensive and time consuming. I'm just trying to give you an honest account of what it involves. Some do have luck with supplements/naturopaths/chinese medicine/diets and others are more difficult. However, some kids do do great with surgery as well, it's a huge gamble.
Posted 3/21/2013 3:51 PM (GMT 0)
Oh Soystud, relax..... obviously I'm not saying I'm right, or true, or whatever. Hence the word "personally". I've just found that FOR ME, over the course of my 10+ years with UC, that dietary changes haven't done much. I've tried them all, nothing has made any great change. I don't think you're starving, but you do seem to be a bit touchy.... This is not a dietary forum, it's an UC forum- last I checked it was ok to post differing OPINIONS.
Posted 3/21/2013 4:08 PM (GMT 0)
I have to agree that in most cases diet did not give us UC and even though diet may be of big benefit to some with UC, in most cases diet is not actually going to cure you. I am a big believer that something gives you UC (not a bad diet in most cases), your colon gets damaged causing dietary problems, and following certain restrictive diets soothes your system from these dietary problems, but that in most cases you are not actually "cured". Now it may be possible that something in your diet, let's say gluten for one example, causes your immune system to attack any time gluten is ingested, causing you problems and by eliminating that gluten your problem could go away. It is my belief though that in most cases this is not the root cause of UC, merely the result of whatever it was that gave you UC in the first place and that the only way you can truly be cured is to eliminate or change whatever that root cause was. Unfortunately, medical sceince doesn't know the root cause of UC, nor is it even trying to figure it out.
Posted 3/21/2013 7:09 PM (GMT 0)
Thank you so much for all your posts. My daughter, Abby, did have multiple stool tests, recently and last year, and there was no other problems. She had a colonoscopy and endoscopy at diagnosis and confirmed UC, but not Crohn's or Celiacs. I have not heard that UC can "spread" to Crohn's. She is tall and well built, so there's no malnutrition going on, yet. The rice diet is temporary and hopefull we can add bland things in slowly and keep track of how she does. She has enough stored fat from being on steroids for 2 months (and being hungry all the time) that she can handle this restriction.

I don't think antibiotics are a good choice for us because I don't think there's anything else going on but inflammation from UC, and I don't want to kill off whatever good bacteria she has left in her colon. Probiotics sound like a good plan, but isn't that more maintenance and less of a flare-stopper?

I was confused at why the SCD actually works on some since nuts and dairy were supposed to be off limits for UCers. It seemed to make her worse when we tried it.

I have read the messages from Chris's colon and sounded like mine. I don't know that we are in such pain that I'm willing to do surgery yet and have her deal with "leaks" and BM's at night and multiple times during the day. We have that now with active disease. Plus I've heard you still have to watch what you eat even after surgery.

I would rather try something more natural and stay away from the side effects of the big meds. What's the worst? She flares? People on meds flare anyway from time to time. Seems like many people who are at the Remicade point end up having surgery anyway, I might as well try different diets since I've about exhaused my choices medically, and I may end up at the same point either way: surgery. Someone tell me if I'm way off base.

Anyone know how long a person can flare without having the colon completely fall apart and need immediate surgery? Just wondering how long I have to toy with diets. I know she'll need iron soon, she's already low, but we have a while until she'll need transfusions.
Posted 3/21/2013 7:18 PM (GMT 0)
ajaja, i totally agree with you that you and your daughter should continue to try different options before surgery. she is so young and that is permanent. she might regret it when she's older.

your daughter could try the paleo autoimmune protocol. it is strict but i did it combined with SCD. the most important part of the SCD diet is DEFINITELY the yogurt. were you making it for her? it is vital, in my opinion, to see symptom improvement.

as for how long you can flare... some people on here have been flaring since diagnosis. others flares on and off. my current flare has been for over a year. i've had 14 iron infusions and 3 blood tranfusions so far. trying to avoid more but i just can't.
Posted 3/21/2013 7:23 PM (GMT 0)
Most people will have to modify the scd at least at the beginning.
There's a member of this site who's flared for over twenty years. Some flare once for a couple of weeks and need surgery.
There's no way to rule out crohn's by the way. Look up the research on pubmed - there's about a 10% chance of a re-diagnosis and this increases when a your talking about a young child, though they don't know by how much. This is true in cases in which the diagnosis is clearly UC and not indeterminate (this increases the chances of CD obviously). You need to ask your GI about this.
Our GI uses abx to alter the gut flora and to hit any potential pathogens (which are unknown). She finds she has good success with them, but like all of these treatments, they do have risks. Is your daugther's flare relatively mild right now? If so, you might be able to continue with the remicade and try other stuff. It's all very individual unfortunately.
Posted 3/21/2013 7:53 PM (GMT 0)
There are flares and there are flares. Some are incredibly bad and very disabling. I would try to have a strategy of doing something not to flare anymore. Most flares get worse and worse just about every time so I would personally not be ok with the attitude of "if she flares she flares". I would definetly use high dose probiotics. There are also a select few medicines in the 5ASA family you can take long term but I would stay away from all of the nasty ones such as pred, immunemodulators, and biologics. Even when they work with no side effects, which is rare, they do tend to stop working eventually, causing you to climb the ladder to ever more dangerous drugs. I can't imagine what you are going through although I had a recent scare with my 8 year old daughter who had a diarrhea episode the other day for basically no known reason. She got better and I just chalked it up to her drinking too much apple juice earlier that day. New treatments, including Uceris, have come out or are coming out which seem to not be so bad side effect wise.
Posted 3/22/2013 2:22 AM (GMT 0)
I haven't observed that my son's UC gets worse or better depending on what he eats. With that said, we are trying to follow the SCD diet but with the addition of potatoes and rice. I don't use almond flour when he is flaring because it is too difficult to digest.

My son was on the medications listed below and couldn't get into remission until we added the mesalamine enemas to the mix. He has mod-sever pancolitis. It seems the inflammation in the lower colon/rectum is the most stubborn to treat.

When he is on oral prednisone for a flare, it takes a long time to get him off. We have to do a very slow taper or his symptoms return.

This disease is extremely frustrating. It is hard to know what to try because there are so many options and not a lot of studies done on diet and not one thing that seems to work for many people. I am constantly wondering if I am doing enough to help my son and feel like I am failing at times.

Hang in there and I hope something works soon.
Posted 3/22/2013 6:57 PM (GMT 0)
Considering we've met our out of pocket max already with hospital stays, etc, I'm wondering if a colonoscopy wouldn't be a bad idea just to see what's going on inside. She's been eating only white rice for the last 48 hours, and not much of it, and lost 3 pounds already, some of that maybe from steroid water retention, but she's still on 10mg pred. She has been having 5-6 BM's a day but at times gets to 9, and I can't even tell if there's any poop in it because I can't see the bottom of the toilet through all the blood. I don't know if that's moderate or severe. If anything there would be diarrhea in it, but I think it's mostly just blood and mucus. She has a permanent potty ring and her bottom is raw! The only thing that has worked is high doses of steroids, weaning makes it worse, remicade seems to not be doing the trick, since it's been 4 days since last infusion (2nd) and no changes. Maybe I have to wait longer?

If she's not responding to a white rice diet only then any diet I do is not going to improve her symptoms or pull her out of this flare. Plus I just read that having surgery on girls decreases their fertility rate by 50-60%. So, would certainly like to avoid that.

Has anyone been able to stop a flare with probiotics? Maybe antibiotics then probiotics?

So frustrating.
Posted 3/22/2013 7:02 PM (GMT 0)
Gosh, Ajaja, it sounds terrible. But I want you to understand that a white rice diet is not like anything anyone here would recommend as a therapy. It is simply a low residue, high carb diet that is meant, I suppose, to give her some calories without taxing her bowel. It is not "doing" anything in the sense that an SCD diet might.

I also want you to know that your concerns about your daughter's future fertility should be put to the back of your mind. Her current health and her ability to get proper nutrition so she can grow and reach puberty should be first and foremost. I struggled to conceive and know many people who had pelvic scarring that made conception difficult - yes, they had to use ART, but yes, they all now have children.
Posted 3/22/2013 10:08 PM (GMT 0)
I got my D under control with probiotics. I was having 6-8 BMs a day and the first time I took VSL 3DS I went 48 hrs without a BM. I actually thought I might have an obstruction. Things even out and I go a few times a day now but not like before. Keep in mind my case is not the norm. But it could help some. It is definitely worth attempting.
Posted 3/22/2013 11:00 PM (GMT 0)
What exactly does her GI say at this point, what are their recommendations? And do you like & trust this doctor? Does your daughter understand her options the best she can for her age? Does she have an opinion one way or the other? I don't know where you got the fertility stat from- after researching j-pouchs & ileostomies for years now, I've yet to come across a female who's had trouble conceiving SOLELY due to their altered digestive tract. Your daughter sounds like she's in pretty bad shape, to be honest, if she's passing that much blood regularly. I don't think you have the luxury of time to fool around with diet (which can take months to have a solid effect on symptoms), or to try pro or pre-biotics. Until you get a decision that both you & her are comfortable with, you may want to try the BRAT diet- white rice alone is like eating packing peanuts, the nutritional value is nil. And to answer one of your questions, I have never been able to stop a flare using anything over the counter, or antibiotics. The poor kid.. I can understand your frustration, but you simply cannot put your feelings or wants before your daughters health. I am a mother, too.
Posted 3/22/2013 11:12 PM (GMT 0)
Ajaja, We were given the stat that fertility would be reduced by 30-50% by our GI but only for a jpouch, not an ostomy (no reduction). I assume you'll go for a jpouch if you can (we were actually thinking of going with an ostomy long term and reversing it if/when she wished. They don't reverse children until around puberty where I live to allow them to develop without meds and to hopefully rule out CD returning in the small bowel). As for severity, my daughter has had over 20 "bms" (blood) during her flares. She's not had surgery yet (though this wasn't really our choice or plan). Diet has pulled her out of her past few flares but I don't know if it will be a long term solution or not. I do think fertility is a concern as it's a monumental decision you're making on behalf of them, all you can do is some research (and really, there's a lot of conflicting information out there), consider you options and make the best call you can. Your GI will recommend surgery. If you don't feel comfortable trying the experimental stuff (I doubt just probiotics will help her but you never know) then it's probably better to consider it very seriously sooner than later as she may deteriorate. As for white rice, did someone advise you to feed her only this or is it all she seems to tolerate? I can tell you if I fed my daughter white rice during a flare she would deteriorate fast (i know because I've done this before but not exclusively).
Posted 3/23/2013 1:03 AM (GMT 0)
Great advice and suggestions. Gotta agree with Ima and Soystud. May take longer than a few weeks to see improvement, and I would eliminate all grains and processed sugar, along with natural whole foods with the higher sugar content. Following an antifungal diet was the only thing that got me well...no grains, yeast products or sugar. Took longer than 2 weeks. If your daughter has ever been on antibiotics,her uc symptoms could be related to fungus. Antibiotics are fungal poisons after all and fungus has been linked to many of our diseases.
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