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Posted 9/4/2010 2:55 PM (GMT 0)
So, I'm confused.I have severe uc throughout my whole colon. I have had it now for a year and a half. I have asked the two docs I've had if diet needs to be changed and they both say there is no known evidence to suggest that diet helps with uc. It might help your symptoms but that is it. My mom is so sure that if I change my diet I will see some relief and maybe it willbe enough that the remicade will heal my colon and I can control my uc through diet and won't need surgery. I don't even knowwhere to start. Also, can diet really help. They upped my remicade dose to 7.5 every eight weeks and I go to the bathroom 5-10 times a day. It is getting alittle worse. My colonoscopy in March showed no improvement from the remicade in my colon. I have another 6 month to a year on remicade and then my doc said if it doesn't heal my colon I have to go off it because of the cancer risk. It has somewhat helped my symptoms but I don't really want the surgery either. I have been in a continuous flare with basicly no relief(maybe alittle). I'm still tired and go to the bathroom alot I just don't go as much or in my pants. My mom says why not try the diet it won't hurt. I'm skeptical and overwelmed.What do I cut out What do I eat. What do you guys eat? I was diagnosed in March of 2009. I'v had symptoms since I was 5 months pregnant. I had my girl in June of 2008. I've hardley had any relief from medications. The remicade helps alittle but according to my doc not enough. I shouldn't be going to the bathroom 5-10 timesa day still. This is just affecting my life horribly. I do thingsbut am constantly worried when I'm out and I'm soooo tired and my joints hurt. So has anyone really had success with diet and do I have to cut out things majorly?Where do I begin?
Posted 9/4/2010 3:14 PM (GMT 0)
There is absolutely no medical support for diet helping UC. And quite a few people on this forum will agree with that stand. But not me or others who have been given their life back by diet modification. I am a believer.

Like you I had almost no relief with Rx drugs or any other supplements. I never went as far as Remicade but knew it was next because my doctor told me so.

You can search this forum for Specific Carbohydrate Diet for more info. There is info on the internet also.
Your mom may be sure diet will help but it is YOUR DECISION. It is not an easy change to make especially for a busy mother. If she supports you and helps make food that would be the greatest help but again it's got to be your desire.

I started slow by removing gluten from my diet, not that difficult and I got results quickly. That is where I would suggest starting. Removing sugar is also a big step forward. HARD to do. Results are more subtle and slower to see.

Best of wishes for your improvement. As I've said many times here, the first time I tried SCD it didn't help me. Now after 8 months I am 98% back to pre-UC condition. That last 2% is sloooow.

Post Edited (imagardener2) : 9/4/2010 1:51:20 PM (GMT-6)

Posted 9/4/2010 3:44 PM (GMT 0)
Hi there, I'm also a busy mom (of two) and have had UC now for about 7 months.  I've been doing the Specific Carbohydrate Diet for about 5 months now, wow, hard to believe.  At first it seemed totally overwhelming and impossible to do, but it's not so hard once you get used to it (took me about a month to get used to it).  Actually, I started the SCD and then when I didn't notice any change after 2 months on it, I dropped absolute everything and just did a fresh juice fast (drank nothing but fresh pressed juice for 3 days) and then very gradually started adding things back into my diet to try to see if any foods were affecting me.  I am still doing SCD, which means NO sugar, grains, starches, and very limited dairy.  By doing the juice fast actually all of my symptoms went away.  I ate a handful of nuts yesterday and today had a little bit of blood.  I know nuts bother a lot of people (but they were soooo good!!!), as does dairy, gluten, sugar, fried foods, and more.  If you can start out with a very very gentle simple diet and see if that offers any relief and then gradually add foods back in, you may be able to tell if there's something that's a trigger for you.  A lot of people here also rave about probiotics.  There are a LOT to choose from, and no one type seems best for everyone, but it certainly doesn't hurt to give it a try.  Good luck to you and hang in there, keep working at it until you find something that works.
Posted 9/4/2010 6:41 PM (GMT 0)
There is no research proving that diet can ameliorate UC. There is also no research proving that diet doesn’t help either. There is no research on diet at all and there won’t be as long as nobody can make money on a diet cure. So we have to do our own research for ourselves.

Diet works very well for me. I feel I am in complete control of my remission. However when I was in the middle of a full flare nothing seemed to work. Maybe that is why diet does not work for everyone on their first try.

My intestine was so inflamed that I had leaky gut that allowed bad bacteria escape to the bloodstream wrecking havoc with my immune system. I had rheumatoid arthritis, eye inflammation, liver problems, and blood counts so fouled up that I was referred to an oncologist to check for lymphoma. Not to mention a perianal abscess that made every BM a torture session that felt like expelling shards of glass. But everything returned to normal once my flare ended. And I feel that diet is primarily what kept me in remission for the past 6 months.

The hard part is getting into remission. For me it was a combination of probiotics, diet, supplements, and antibiotics. Probiotics are important to prevent malevolent bacteria from again obtaining a foothold in your intestine. Zuch’s idea of a juice fast to jump start remission sounds interesting and I may try it if I ever fall into a flare again.
Posted 9/4/2010 9:15 PM (GMT 0)
I know milk affects me and coffee. If I have a starbucks(which I love) I pay for it for days. Thanks everyone it is so overwelming

Posted 9/4/2010 10:27 PM (GMT 0)
Milk and coffee...those are food symptoms, namely lactose intolerance and increased activity from the coffee. Not related to inflammation in your colon. Only symptomatic as your doctor says.

you need to understand the difference before you start your journey in changing your diet.

There is NO harm in trying and you have absolutely nothing to lose.

Your mother, in all her wisdom, doesn't understand that food symptoms do not equal inflammation symptoms to improve your remi status.

Food has no bearing on my UC....NONE at all....but I do eat for comfort, but many times I don't care, and will have symptoms of discomfort, namely gas and cramping, after about 6 hours afterward.

To me, Starbucks coffee would give me horrific nausea, that stuff is like poison to me and I wonder how anyone could drink it, let alone crave it.

q
Posted 9/4/2010 10:32 PM (GMT 0)
For the first year or so after being diagnosed I thought that diet didn't affect my UC. Maybe I was in denial because I didn't want to give up my pizza, soda, sub sandwiches, and chili dogs. But then I started to really notice things like you mentioned -- milk, coffee, etc. So I stopped eating so much dairy and eliminated caffeine completely (the withdrawal headaches were agonizing!). But I did see some noticeable improvements in symptoms.

A few months later I decided I would try one of those diets I read about online that was supposed to help UC. There were a few different diets to choose from, but I decided to try the SC Diet. That meant I had to eliminate glutens and sugars as well. I had some nice results within the first two weeks.

Here I am 3 months later and I currently follow SCD about 98% of the way. I feel that I'm still getting better each week. Still going about 4 times per day, very little to no blood, solid stools, sometimes a bit of urgency. However, this is much better than the way I started out going 20+ times a day with uncontrollable bloody D. So I'm going to keep doing what I'm doing and hopefully achieve remission one day.

So I'm a believer and I do think that diet can play a big part in the healing process when it comes to UC.
Posted 9/4/2010 10:37 PM (GMT 0)
CPP, Well, call me skeptical, but after 4 months into the diet, 4 times daily with very little blood and some urgency doesn't mean 98% of the way.

I do hope you are also on some meds, however.

q
Posted 9/5/2010 12:44 AM (GMT 0)
Our perspectives whether food has any effect on UC has as much to do with differing body chemistry as much as anything. I am allergic to 5-ASAs whereas some have thrived on them for over 20 years. But if I could not control my symptoms with diet then I would be in deep doodoo having to rely on pred or something worse. And if others were not so successful with mesalamines then they might be in doodoo because apparently diet doesn’t seem to work with everyone.

But I am lucky that diet seems to work. Whether my symptoms were caused by discomfort foods, gluten intolerance, bona fide UC inflammation, or whatever, after watching my diet and taking natural supplements the doctor’s scope revealed that my colon was almost normal. This was after two colonoscopies that verified that I have IBD.
Posted 9/5/2010 1:01 AM (GMT 0)
The medicines your GI prescribes for you "might help your symptoms but that is it." They won't cure your UC, they may give you side effects, and they may even make your UC symptoms worse.

Doctors aren't nutritionists. They aren't going to know what foods you should eat and avoid. And besides, different foods affect people differently; so prescribing a diet won't work, although there are some foods that are known to be harder to digest than others.

To find out whether or not certain foods bother you, keep a food journal. Remember some foods may bother you more during flares than during periods of remission.

Particular foods to watch out for include:

diary
caffeine
fructose
other sugars
sugar substitutes
processed foods
wheat
yeast
gluten
fatty foods
fried foods
foods that are known to cause gas (beans, coniferous vegetables)

Turmeric and ginger are known anti-inflammatories. Try adding these to your diet.

Spinach (which is high in magnesium and calcium) has helped many. You can also try eating spinach.
Posted 9/5/2010 2:48 AM (GMT 0)
Doctors are taught the big corporation way of only way to help is with manufactured drugs alone everything else is a conspiracy theory and a quack cure. Food may or may not cure you, but it can make a difference.
Posted 9/5/2010 5:34 AM (GMT 0)
The specific carbohydrate diet has worked wondesr for me also. Check out the book "Breaking the Vicious Cycle". This book is about eating foods to starve out the bad gut bacteria and replace it with good bacteria. It also teaches which foods are primarily broken down in the small intestines, giving a diseased colon some rest and healing. It doesnt work for everyone but for alot of us it has been amazing. I completely agree (as usual) with Imagardener to try first eliminating all wheat products and see if that gives even a little bit of relief. If you feel even a bit better then this diet will probably work for you. Its not a easy diet but for those of us desperate for relief it is definitely worth it!!!
Posted 9/5/2010 8:33 AM (GMT 0)
If dairy bothers you, but it out. I know of a child who was diagnosed with pancolitis at 2 years old. His Gi wanted him on sulphasalazine etc. His parents refused and tried everything under the son. Vitamin E enemas, fecal transplants, probiotics etc etc. This kid had other issues related to his UC = eczema, OCD, bloating etc. Though nothing seemed to be working they kept him on a very strict diet for two years (rice, meat, some veggies at every meal - no fruit, no dairy, no gluten, no sweeteners of any kind). They found his improvement was very slow but eventually (it took about two years) he got better and is now in full remission. They attribute this to the diet. Diet isn't likely to cure you. Unless you have specific intolerances which you can identify and remove to attain remission, it will be a long process. Certain proteins (ie. from dairy, eggs, soy, wheat) MAY cause the immune system to over react until the leaky gut is fully healed. If you're going to try dietary modification, I wouldn't bother with just removing gluten since you sound like you are running out of options. I would go on a very basic meat and veg diet for a month of so and see if you feel any different. If not, you tried. If so, you can start adding back foods and hopefully identify your triggers.
Posted 9/5/2010 11:18 AM (GMT 0)
i know diet has made such a difference to me. you can look at my posts if you wish ive been around for a wile and your welcome to follow what ive done on this web page. i personally hate uc very very much, and i hate the side effects of the meds. and they stopped working for me.
i too gave up gluten at first like imagardener2 i really noticed a difference with my asthma and allergies, then i went into raw and i did notice a difference with my health. but with both gluten free and raw i was still having bleeding. i then found this guy named gerald green who bacalilly uses the specific carbohydrate diet. except he cuts out the sugar. he says it is to reduce candida. i hit remissson after a month after the diet. i did have a few minor blips, no bleeding but i did have a little mucus. it took a wile for mucus to clear.
at the present i use no meds
i have no bleeding and i havent had mucus in a wile touch wood.
my body is defintaly proof that diet does make a difference it is a big cause. as there is no medical evidence i have put my self up as a guinie pig as i personally wanted to see what would happen. and yea i got a result. there is a difference and this body im in is proof of that. i havent used meds in 5/1/2 months and i havent had bleeding. i know diet was the cause as you cant just go from bleeding every day to not bleeding every day. and no urgency, and a whole list of other symtoms. are gone as well



no joint aces i had troubles with my left knee after a huge flare in april 2009
no heart pulpataions
more energy
no more panic attacks
no shakyness in morrnings
no bleeding
no urgencey
1 bm a day

that is not nothing. i do heavely speak for diet. as no there is no medical proof but im here and im proof. Ive used myself as proof. It scars me as i had such a difference in this expereinment that i did on my self. it made me question the whole medical industry and my doctors. i recently had a blood test done as i wanted to see how i was really doing and blood work is the best way to tell that. no meds my bloods are normal. that i was pleased with. do experiment with diet see where you go. it takes a wile to get it right for you.

Post Edited (Hellokitty) : 9/5/2010 5:26:17 AM (GMT-6)

Posted 9/5/2010 1:37 PM (GMT 0)
Bummer Jordan. I was really liking your post until I clicked on your website and you are SELLING information that is FREE.
How dare you take what Elaine Gottschall created (Specific Carbohydrate Diet) and sell it for your own personal profit. That's stealing.
Get lost.
Posted 9/5/2010 2:07 PM (GMT 0)
I absolutely believe food can be implicated in UC symptoms. For me, an antifungal diet helped me get well again. And, we can see here by others' testimonies that the SCD has been beneficial. There has been research that implicates fungus as a possible connection with IBD and has shown that some patients show much improvement after following an antifungal program. Here is an article that has floated around on this site before, but I feel is worthwhile bringing up again, for those of you who may be considering experimenting with a diet change:

http://www.healthe-livingnews.com/articles/fungal_etiology_of_inflammatory_bowel_disease.html

To change ones diet(lifestyle)  has to be a personal decision. For me, I was sick and tired of being sick and tired. I knew that at the end of a month of experimenting with an antifungal diet I would know whether the foods I was eating were contributing to my symptoms. I had nothing to lose, and everything to gain. After hearing my doctors telling me for so many years that diet does not matter, and even humiliating me in their office when I told them I believed fungus was my issue, there was no one more surprised then me when after just 14 days on the diet I felt so much better....not completely well, just remarkably better. I continued on the strict diet for probably 4 months and then reintroduced foods back. Today, I still am careful not to eat too many grains and sugar, and certainly no yeast foods for me.

No guarantees, of course. But my motto is: If you always do what you've always done, expect the same results. Good luck.

Posted 9/5/2010 3:34 PM (GMT 0)
If you look here www.healingwell.com/community/default.aspx?f=38&m=1894597 and my post makes sense to you, then you can see that in my worst kind of killer flare I can test and see the difference food makes. Its one of the cornerstones of my cancelling my hospital stay which was to begin last Tuesday. There are MANY intersecting biological and environmental influences. It is very complex. I will sum it up this way ( applies to my own experience ). This was the FIRST time my Doctor was willing to discuss food as a part of the flares beginning. Food does not cause UC but I know I can flare from consistently poor food choices.

Remove antagonizing/allergenic foods, fluids, artificial foods and artificial sweeteners.
Move toward slower transit time, eat foods requiring more digestion time, many protein powders are 'peptides' and pre-digested.
Include Spinach
Reduce sugar and carb load, increase protein.
Find what medications take you another step forward, try to change one at a time, calling the nurse seems to be fast and efficient.
Settle on a long term maintenance medication you believe helps you, none of them help everyone
Antihistamines should be examined, there is some seasonality that nudges the immune system and many people report improvement
Bending over all the time picking up things in the yard and home irritates my gut, I bleed more, when I am that sore riding the motorcycle only makes it worse and should be suspended.
If prednisone is not effective and worse when it wears off at night, use cortisone enemas to get thru the night.

Many things intersect here and certainly the CNS and Enteric Nervous system as well, so try to find cognitive relaxation therapy, always avoid emotional turmoil.

When your completely healed is a good time to attempt Human Probiotic Infusion as the missing friendly bacteria can colonize the entire surface but use a young person who has never had antibiotics.
Posted 9/5/2010 9:41 PM (GMT 0)
thanks for the advice everyone. I'm going to start writing down what I eat tomorrow(just bought a notebook) and I'm cutting out dairy for awhile and caffeine. I'm interested in trying the SCD diet but is it hard? I have three kids and it overwelms me? I will check out all the posts and stuff on it. Thanks again everyone. What would I do with out you guys!!! This site is great. wink
Posted 9/5/2010 11:25 PM (GMT 0)

quincy said...
CPP, Well, call me skeptical, but after 4 months into the diet, 4 times daily with very little blood and some urgency doesn't mean 98% of the way.

I do hope you are also on some meds, however.

q

q,

I'm afraid that you've misread my post. I wrote that I follow the SCDiet 98% of the way, NOT that I'm healed 98% of the way. What I mean by that is that I do deviate from the diet guidelines sometimes. Fore example I take VSL#3 probiotic which is not SCD legal. I also, on occasion, eat tacos made with soft corn tortillas. Corn is not SCD legal.

I think the posts in this thread support the theory that diet can be very helpful for some people, just as rectal meds can be helpful for others. You shouldn't be so skeptical.
Posted 9/5/2010 11:31 PM (GMT 0)
My daughter is settled close to the SCD diet - and it has really helped her.
My best advice is clean out your freezer then buy containers(bags etc.), almond flour and lots of meat and good veg. and then get a friend or your mum to look after the kids. Have a massive day of cooking and freeze down all the muffins/flatbread and safe casseroles that you can get together. That will get you a head start for safe choices when time is short.
I have made all sorts of SCD meals, and with a bit of creative thinking you can make them 'normal' for everyone. It does take more time but with planning, a big freezer, and family help you can eat really well.
There is no escaping that 'fast food' is off limits but if the balance is less pain/urgency it has to be worth it.
Sue
Posted 9/6/2010 8:21 AM (GMT 0)
Yes, I misread your post CPP. Food and rectal meds are not in the same category, and I always state that food has impact on symptoms, for food has action in the digestive tract.

We add foods to encourage bms, to slow them, etc....one has to get it that if you have diarrhea, eating tons of fruit and high fibres such as certain veggies or grains can cause more diarrhea, gas, bloating and cramping.

One needs to recognise what symptoms that one has and that not all symptoms are UC-related....but I totally disagree that food causes flares and that it's OK to have slow simmering on the edge of flaring all the time symptoms and if I have a piece of bread all hell will break loose.

Absolutely adjust diet intake, seems senseless to suffer.
Medications serve a purpose, but I can't see that food in the form of poop will have any bearing in healing the colon.

q
Posted 9/6/2010 10:33 AM (GMT 0)
I had a lot of issues with meds, so am following a diet somewhat similar to SCD (see my signature) and am 95% symptom free. 1 BM per day, no urgency, no mucus, no blood. Just slight cramping at times. BUT if I eat poorly, the symptoms come back quickly (for me). I am a STRONG believer in diet now, as are many. Of course different things work differently for people, but it's worth a try imo. Best of Luck
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