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Ulcerative Colitis
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Posted 2/4/2013 1:15 AM (GMT 0)
I have found this forum to be very helpful, my 15 year old son was diagnosed with UC in January of last year, he has had a very difficult year, he has flared several times in the past year and the pred they put him on is only a bandaid, we sought another opinion and this Dr. had a top down approach and suggested Remicaid, he did his first infusion in early November, followed by another after Thanksgiving (they did nothing) and the last one was 12/27 after the last, he finally stopped bleeding and some of the symptoms went away, however he picked up a sinus infection in the hospital 4 days later, which turned quickly into bronchitis, so bad he had to have a shot of antibiotics in the office after an oral cycle, 3 days after the shot, he began bleeding again, they thought it might be due to the antibiotics, but all samples came back negative for the usual suspects, c-diff, parasites, etc. So now we are looking at a colonscopy/endo on 2/7 to determine if this has moved to Crohn's (he has lost 16 lbs in the last 2 months) if he is worse than he was a year ago, and if in fact the Remicaid did any healing to his colon. I have read so many books and the last three really focused on diet, but I thought diet was more to folks with Crohns? They are saying a diet with no animal protien, fruits, vegtables and some starches have made folks go into remission completely, no meds, etc. We are going to wait and see what the test tells us on Thursday, but has anyone out there had success with diet alone? I don't know if this is just a load of dung or there is some substanance to it. I have had folks tell me diet, organic they are no longer on meds, I just don't know and my heart breaks for my son, he has felt like 'crap' for an entire year -- any thoughts?
Posted 2/4/2013 1:29 AM (GMT 0)
You should have created this thread on the Crohns section. You might create more of a riot there lol, just kidding.

Diet?...diet could help, it's worth a try. I'm not sure how compliant your kid is. He's 15 after all, he wants to eat McDonald's with his friends, not eat veggies and organic stuff.
Posted 2/4/2013 1:29 AM (GMT 0)
hey myteen!

it might be a good idea to try some diet modifications. i think the "no animal protein, fruit, veggies, some starches" diet is a terrible idea and i don't know anyone that does this. a lot of people try gluten free, dairy free, sugar free, starch free, grain free, soy free. there are a lot of different combos you can do but it all boils down to what gives your son symptoms.

SCD, GAPS, Paleo, FODMAPS are the main diets for IBD. they can definitely help some people.

to be honest though, i have not met or talked to a single person who can manage IBD with only diet (and i've talked to hundreds with these diseases).

Posted 2/4/2013 1:33 AM (GMT 0)
MyTeen,

Welcome to the forum.

They are saying a diet with no animal protien, fruits, vegtables and some starches have made folks go into remission completely, no meds, etc

 I don't know if this is just a load of dung or

I'm sorry your son is suffering, and hope he improves soon.

Are you saying: no animal protein, but yes to fruits, veggies and some starches?

BTW, IMO diet as NOT a load of dung.

I strongly believe in the Paleo diet - it is an anti-inflammatory diet, and inflammation is the cause of most disease, including UC. It consists of eating grass-fed animal products, veggies, some fruits, BUT NO GRAINS.

Yes, many on this forum have had very good results with diet.

Many UCers and IBDers have tremendous issues with both gluten and dairy.

I would suggest you try that first, and do a food journal.

There are other things you can add, and try as well: probiotics are crucial.

Is he on any?

Supplements: slippery elm powder to coat the intestinal tract, L-Glutamine for colonic  repair, ensuring adequate levels of vitamin d3 is crucial as well.

Has he been tested for vitamind d3 deficiency?

If you are interested,  there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 2/4/2013 1:33 AM (GMT 0)
Diet can definetly help some but everyone is different. There is no such thing as one diet that will help with UC. One diet works in one, a different diet in another, and others get no benefit from diet at all. It's a trial and error thing.
Posted 2/4/2013 1:51 AM (GMT 0)
Thank you all for your quick response and advice. I am aware that every one is different and what works for one won't work for someone else, I think a food diary is a great idea. He has been tested for gluten, etc but we have learned that dairy does bother him and we have eliminated it from his diet for the most part (ice cream, milk, etc) so any advice is very much appreciated. He is taking a probiotic and has been for most of the year however his Dr. at the last meeting mentioned starting VSL3 but after the colonscopy he wanted a clear picture of what is going on. I also had read about supplements and we hope to start some of those after the test, the Dr. also mentioned uping the dosage of the Remicaid. I have read a lot on the forum that people have had great results with the drug, I just wish there was a less invasive fix, as I am sure everyone on this forum does. I will research the other diets and information mentioned and I sincerely appreciate all your help and support.
Posted 2/4/2013 2:01 AM (GMT 0)
It is my opinion that in most cases diet isn't responsible for UC. Something causes our immune system to get out of whack, causing inflammation in the colon, which in turn can cause food intolerances of different kinds. Eliminating the things which we have become intolerant to should help our systems considerably but don't address the underlying issue of what actually caused the inflammation to begin with. Something has to heal the colon, usually drugs, and diet changes can help speed up this process. Unfortunatley stopping this process (usually with drugs) only helps while you are on the drugs. It can completely heal the colon but after the meds are removed the attack returns and you go through it all over again. That is why it is important to have a maintanence strategy in place to help keep the attack at bay. This is usually done with the least invasive drugs (hopefully the ASA's), kept up forever. If you are lucky enough to have a completely healed colon, and a successful maintanence therapy in place to stay in remission, it is my belief that your food intolerances will then be gone and you no longer have to worry about the diet as much.
Posted 2/4/2013 2:04 AM (GMT 0)

garylouisville said...
It is my opinion that in most cases diet isn't responsible for UC. Something causes our immune system to get out of whack, causing inflammation in the colon, which in turn can cause food intolerances of different kinds. Eliminating the things which we have become intolerant to should help our systems considerably but don't address the underlying issue of what actually caused the inflammation to begin with. Something has to heal the colon, usually drugs, and diet changes can help speed up this process. Unfortunatley stopping this process (usually with drugs) only helps while you are on the drugs. It can completely heal the colon but after the meds are removed the attack returns and you go through it all over again. That is why it is important to have a maintanence strategy in place to help keep the attack at bay. This is usually done with the least invasive drugs (hopefully the ASA's), kept up forever. If you are lucky enough to have a completely healed colon, and a successful maintanence therapy in place to stay in remission, it is my belief that your food intolerances will then be gone and you no longer have to worry about the diet as much.

Smart man right here! Took the thoughts out of my head. I concur.
Posted 2/4/2013 4:14 AM (GMT 0)
Diet modification put my UC into remission which no meds or supplements ever did in 10 previous years.
You don't need to try anything crazy but it is challenging to eliminate grains (which includes gluten/wheat) and dairy.

Tests for gluten and lactose (dairy) were negative for me. However when I eliminated these from my diet I began getting better and better. Just saying the tests are not reliable. My gut was in such bad shape it hated almost everything I ate but after removing the worst offenders after a few months I could start adding other foods back in.

Something important to keep in mind is "It's not forever" when you remove a food group, otherwise it can feel depressing to think you can't EVER eat ice cream again....because I do every now and then and it's OK now that my gut has healed.

Doctors will not give you support for diet modification, it's not in their playbook. But my diet is a healthy one and if I'd waited for a doctor to suggest it I'd be minus a colon by now.
Posted 2/5/2013 7:11 PM (GMT 0)
I believe dietary modifications played a key role in getting out of my initial, year-long flare. Probiotic supplementation (high doses) is also key and it may be necessary to address viral or bacterial issues and/or gut dysbiosis. There are many alternative approaches that can help, but medications are often necessary when you're in crisis mode.

I highly recommend the book Optimal Digestion for a birds-eye view of the latest treatments and alternative approaches.
www.amazon.com/Optimal-Digestion-Strategies-Achieving-Digestive/dp/0380804980/ref=sr_1_4?ie=UTF8&qid=1360091592&sr=8-4&keywords=optimal+digestions

In terms of dietary books here are three I've found helpful, in order from most lenient to most strict:

Eating Right for a Bad Gut
www.amazon.com/New-Eating-Right-Bad-Gut/dp/0452279763/ref=sr_1_1?s=books&ie=UTF8&qid=1360091372&sr=1-1&keywords=eating+right+for+a+bad+gut

Listen to Your Gut
www.amazon.com/Listen-Your-Gut-Inflammatory-Diverticulosis/dp/0968542107/ref=sr_1_1?s=books&ie=UTF8&qid=1360091438&sr=1-1&keywords=listen+to+your+gut

Breaking the Vicious Cycle
www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818/ref=sr_1_1?s=books&ie=UTF8&qid=1360091493&sr=1-1&keywords=breaking+the+vicious+cycle
Posted 2/5/2013 7:21 PM (GMT 0)
We've tried quite a few diets and have had variable results. At the moment we are more stable than not with the paleo diet. I do think it's hard on a teen but having said that I do know many children and teens who are maintained on diet alone. If you pm me I can give you some details of some parents groups which specifically deal with the needs or parents/children with IBD. There is a group which is focused specifically on alternative treatments for children and several more general ones. Diet mod is difficult but if it works it's definitely worth it.
Posted 2/5/2013 9:46 PM (GMT 0)
And there are some great new Paleo cookbooks that have been released recently. I have one for slow cookers that's been awesome.
Posted 2/5/2013 10:19 PM (GMT 0)
princesa, what's the name of the paleo crockpot book? i LOVE using one since it's so easy and makes so many meals for me.
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