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This is how I'm going to put my Crohn's into remission
- Thread starter acemagic
- Start date
I do think you've got something there as I've noticed when my daughter is busy visiting with friends or involved in a project, her Crohns symptoms subside. Positive thinking and staying busy is a big part of the puzzle, for sure!
Hey Adam. Thanks for your response again. I will make sure i try to juice out the vegs - I eat mostly chinese vegs since I'm chinese. I also eat raw apples after dinner or a snack before dinner as well at times.
To be honest.. I don't know what state I'm in. In comparison to a lot of the other members here.. it seems like I'm suffering a lot less pain. However, I do have 2 fistulas and also have constant discharge (mucus stuff from my bum) which I have to wear an extra pad along with my underwear. Like you mentioned I haven't had any surgeries done yet and I am hoping that I don't have to any time soon. I am 28 and I would want my full body for as long as I can.
With regards to solid stool.. I can only say it took me a long time to get there and it's still unstable most of the time. I get formed stool but it will be watery at times.. and there would be some days for no reason that I have a D.
I'm hoping to gain some weight back as well. It sort of bothers me whenever people see me and ask why am I so skinny. I wear 28'x30' jeans for male and i still probably have to wear a belt to make sure it doesn't fall off.. I used to be a good solid 29'x30
Hey Lisa and Ozboz..
I find that easier to be said than to be done.. it's hard for everyone and harder for people that are trying to be financially stable or want to start a family on top of trying to be healthy. I know there are a lot of members here that are in the same position but in my culture and as a male figure, I'm suppose to have a stable income - it would be nice to be a good income.. but for now.. i'm looking to have a stable one. It's due to my job nature that my income fluctuates a lot and having to deal with different people and contracts will surely affect my mood.
I can tell you in many points of my diagnoses (only 1 and a half years..) I was deeply depressed though. I didn't go for any diagnoses for depression or anything but I just wanted to be alone and in meltdown mode. It didn't matter if I was invited to go to my friends' house or just heading down to dinner with my family, I just wanted to stay away. That's why I am so astonished to read that some of the members here have to go through extra-depression as a side effect while taking some of their meds - I for sure would not be able to endure that. I am quite a negative thinker and is too easily worried with anything.
I am trying to learn how to "let go"/"let it be" though since I have been diagnosed with CD. It's something that I'm still striving to learn each day. I am on the computer a lot and I think starting today I will try to be more active on this forum. It sort of feels pretty good when I can just freely talk about anything with CD here. I didn't felt that way a year and a half ago.. I just wanted to be away.. maybe that day will return when something significant happens with my CD... who knows :confused2:
Monmon218:
Crohns can make you feel so isolated, I know, but don't let it take the joy out of your life. Just drop a note here anytime as we all need to talk, and we are good listeners, too.
While my daughter was in college, her four dorm roomates had no idea what she was going through - wearing adult diapers in class, running to the barhroom and not always making it in time. She always called me (I was four hours away) when she needed to vent and that is how she got through the difficult times. Those with Crohns as well as those of us who have loved ones with Crohns need to lean on each other, for sure!
Talk to you later!
Lisa
Crohns can make you feel so isolated, I know, but don't let it take the joy out of your life. Just drop a note here anytime as we all need to talk, and we are good listeners, too.
While my daughter was in college, her four dorm roomates had no idea what she was going through - wearing adult diapers in class, running to the barhroom and not always making it in time. She always called me (I was four hours away) when she needed to vent and that is how she got through the difficult times. Those with Crohns as well as those of us who have loved ones with Crohns need to lean on each other, for sure!Talk to you later!
Lisa
Sorry for recommending something potentially troublesome (eggs, etc).Thanks for pointing that out.
S. Boulardii has some risks, too. Some have an allergic reaction and, in some rare cases, a dangerous systemic fungal infection.
http://en.wikipedia.org/wiki/Saccharomyces_boulardii
S. Boulardii has some risks, too. Some have an allergic reaction and, in some rare cases, a dangerous systemic fungal infection.
http://en.wikipedia.org/wiki/Saccharomyces_boulardii
I eat a lot of junk in terms of variety but not in quantity so I’m not getting enough calories despite eating high calorie food.
I don’t know whether I’d fast – since I don’t feel hunger, it wouldn’t be hard for me to resist food, but the problem is I’ve been recommended so many different diets, most of which do have a sensible theory behind them and anecdotal evidence that they work, but then they didn’t end up working for me.
I think for me to try something like that again, I’d need more scientific evidence that it would help, because in order to feel comfortable attempting it, I’d need something that made it stand out from the other recommended diets/alternative treatments. Otherwise I could go on trying different diets for ever – the only ways I’d stop experimenting would be firstly if I found a diet that worked (or brought substantial improvements), or secondly, if I just decided it wasn’t worth trying different things any more. I ended up doing the latter, which actually made me much better mentally, as I found the constant worry that I was eating something bad and the disappointment when diet after diet brought no benefits incredibly stressful. Probably I'd have had a better time with diets if I could have felt more relaxed about it. As it is I'd be wary of trying diets again unless I really believed it would work.
But isn't fasting used in mainstream medicine? Or does intravenous nutrition not allow the same kind of healing as the kind of fast you're recommending?
A while back, when I was still trying different diets, I tried an elimination diet a nutritionist who told me I had "leaky gut syndrome" recommended. It worked on similar principles to what you're describing, I think - I'd go weeks only eating very basic foods (e.g. rice), which was supposed to allow my gut to heal before I added things back one at a time to test their reaction. The basic diet really didn't help me at all, and it was sugar free. Do you think a liquid diet would be more likely to help? Or do you think the fact that going sugar free (though still eating solid food) didn't improve things indicates that I'd have no luck with a sugar free diet if it was also all liquid?
Sorry for all the questions. I just find it interesting that diets seem to benefit so many people with Crohn's but doesn't seem to help me.
I'd starve on a diet like that, even just for a few days, there's no way it would be healthy for me to try that. This was one of the big problems I came up against when I tried to help my illness through diet before - it's not just that health foods are often high in fibre and so make symptoms worse, it's also that health foods are often so low in calories.
SN8888 - Have you tried other forms of probiotic before S. Boulardii then ? The reason why I'm asking is - My current goals are to gain some weight.. and to decrease my CRP and ESR scores on blood tests. I think if I can achieve those 2 things.. I am hoping that I will be in what people called "remission".
I have started Krill Oil last night but didn't have nice bowl movements though.. I'm hoping that it'll start kicking in and I want to get a blood test and see the results within 2 weeks.
- Location
- Calgary, AB, Canada
Hey UnXmas,
Oh wow, I can totally relate to everything you just said. Scientific research was my number 1 priority too, until I realized that there are very little scientific studies funded for the effects of food, because there's no profit in it. Drug companies develop drugs that they can patent and sell if it turns out it's helpful to people with a specific disease. Nobody can patent an apple (for example), so if it turns out that apples cure crohn's disease, no company is going to benefit from that, so why bother investing money in a study to determine if apples cure crohns?
So, unfortunately, when I was doing my research, I had to go by word of mouth, as there were very little studies available. I spoke with a few people on the forum who said they were in remission, and asked what they were doing (list of meds, dietary changes, lifestyle habits, etc), and the biggest common denominator was that they avoided grains, dairy and sugar (mostly). That's when I looked online for a diet for crohn's that eliminated those things, found the Paleo diet, and found quite a few other Crohn's sufferers who are on the diet and are having good results:
http://paleohacks.com/search?q=crohn's#axzz2SiTE8CiJ
I understand your hesitancy to try something new, especially when you mostly feel good. I was in that same boat for years and it took 4 surgeries before I changed my diet. Also, I can't even say for sure if it's doing anything, but I do feel significantly better if I stick to healthier foods and my gut isn't irritated.
As far as going on a liquid diet.... I weigh about 5 pounds more than you do, and at this very moment I've gone about 44 hours now without food, and I'm actually not even hungry because I've been drinking the juices, tea and water. I'm actually quite surprised. I thought I'd be starving right now, but I attribute the lack of hunger to the fact that I'm getting the core nutrients my body needs. The juices contain insane amounts of nutrients, so my body isn't craving anything. I watched an interesting documentary movie on juicing called "Fat, Sick and Nearly Dead" a couple of months ago. People going on juice fasts for months at a time, and their health issues completely vanishing. They lose a lot of weight too, so that is tougher for us skinny people, but I'm not saying go on it for a month. Just try giving it a couple of days if you're feeling rough.
I can't speak to intravenous nutrition because I haven't tried it personally, but from what I've heard, it's one of the most successful ways of settling a crohn's flare. It makes sense to me too. Give the gut a rest and it heals up.
Sorry if I gave you a misconception. I'm not saying going off sugar will help. I think you need to go off grains, sugar and dairy. That's the diet I'm trying to follow. Going off one or the other may not do anything. I was just suggesting that if you go on a juice fast, dont drink sugary drinks because it defeats the purpose!
-Adam
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I'd noticed that too, from just general observation online, that grains (especially gluten) and dairy after often identified as problem foods. And sugar too, though that's often regarded as an unhealthy food anyway, even by people without digestive problems.
I actually did give up all of those three things simultaneously, as the elimination diet I followed began with just rice, lean protein (fish, chicken, etc. - no dairy), and various fruit and vegetables. Then when I didn't have any improvements on that, the nutritionist put me on a slightly altered version without the rice - I can't remember now what the other changes were, but I'm pretty sure I wasn't on any grains, definitely not on dairy, and the only sugar I was having was from fruit.
I haven't tried the diets which are popular among people with Crohn's - paleo, scd, etc. - but having tried diets which involved excluding many of the foods that those diets also exclude, I find it hard to imagine I'd benefit much. Whereas I do do well on low fibre/low residue diets, which tend not to be seen as particularly healthy or healing because of their reliance on processed food and lack of fruit and veg. This type of diet calms my symptoms down, but I don't think it's claimed to do much about the disease itself and inflammation. So whereas other Crohn's diets seem to work on the principle that once the body is healed it will be able to tolerate foods that were difficult before, limiting fibre is something that I have to do continually, unless I risk increasing my symptoms.
Good luck with your fast! I hope you'll post the results. The only times I've been on fasts have been in preparation for surgery, which was no fun at all and usually in combination with having to clear the bowel out with laxatives, so no chance of healing the digestive system there!
UnXmas - when you were on the elimination diet - Rice, Lean Protein, fruits and vegets, how did you feel ? what makes you feel like you weren't seeing improvements ? because of bowel movements ? lose stool ?
Cause at the moment I think I have a diet like the one that you describe (I haven't looked up on what elimination diet is) but the food that I eat throughout the day consists of (a piece of bread, avacado, seedless and skin less tomato, chicken, pork, rice, all sorts of vegs, at times apple for snack)
Now I was on that mostly throughout the last a year and a half - like you said i dont' see any improvements as my blood results are still showing inflammation and just the weekend i found another fistula.
EDIT - I have to mention that throughout my last year and a half, I have been travelling (4 to 5 times in that period) and the trips are usually 4-5 or 7 days long. As soon as I started eating out my stool has became mud like. But as soon as I got home i get a few firm stool days and then back to my norm (some watery stool but still have the shape and at times random D)
However with that said I believe that we all really don't know how our stomach is even with any kind of diet - we're just relying on how we feel ?
I personally didn't feel any difference at all.. even though i'm still losing weight very very slowly.
What are you planning to do next ? I am asking cause I am switching some of my supplements now and I am going to try my best to eliminate all types of artifical sugar/snacks. I am going to try to have the regular meals and if i'm hungry, i'll take an apple.
I am also forcing myself to do some excercise from now on (just plain walking, twisting and turning my body, short jogs, etc) as I have been inactive in any kinds of sports prior to my diagnoses (from highschool - graduation of university - i was almost sitting everyday).
I really hope that there's something that we can do dietary wise to at least control our crohn's. I am always nervous as I don't feel anything yet it seems like my disease is progressing - like you said - I don't feel any different - still quite okay with energy wise and I'm still working.
Cause at the moment I think I have a diet like the one that you describe (I haven't looked up on what elimination diet is) but the food that I eat throughout the day consists of (a piece of bread, avacado, seedless and skin less tomato, chicken, pork, rice, all sorts of vegs, at times apple for snack)
Now I was on that mostly throughout the last a year and a half - like you said i dont' see any improvements as my blood results are still showing inflammation and just the weekend i found another fistula.
EDIT - I have to mention that throughout my last year and a half, I have been travelling (4 to 5 times in that period) and the trips are usually 4-5 or 7 days long. As soon as I started eating out my stool has became mud like. But as soon as I got home i get a few firm stool days and then back to my norm (some watery stool but still have the shape and at times random D)
However with that said I believe that we all really don't know how our stomach is even with any kind of diet - we're just relying on how we feel ?
I personally didn't feel any difference at all.. even though i'm still losing weight very very slowly.
What are you planning to do next ? I am asking cause I am switching some of my supplements now and I am going to try my best to eliminate all types of artifical sugar/snacks. I am going to try to have the regular meals and if i'm hungry, i'll take an apple.
I am also forcing myself to do some excercise from now on (just plain walking, twisting and turning my body, short jogs, etc) as I have been inactive in any kinds of sports prior to my diagnoses (from highschool - graduation of university - i was almost sitting everyday).
I really hope that there's something that we can do dietary wise to at least control our crohn's. I am always nervous as I don't feel anything yet it seems like my disease is progressing - like you said - I don't feel any different - still quite okay with energy wise and I'm still working.
Paleo is the way to go. Sugar and grains cause inflammation.
JohnnyO,
Maybe I should really read up on Paleo Diet ? I am always confused with the term Sugar as people said white bread and white rice becomes sugar... I am still trying to learn what's not "sugary"
In terms of grains.. I don't eat a lot of grainy stuff i think.
Do you believe that if we reduce the inflmmation in our body.. it will do less damage to your intestines ?
The reason why i'm saying that is cause I've always been high on inflmmation levels with my blood test.. and now I read that fish oil helps reducing inflmmation - I didn't have much good effect with it but I am going to try Krill oil now.
I just hope that if I can keep my inflammation levels down.. my crohn's can be controlled..
Maybe I should really read up on Paleo Diet ? I am always confused with the term Sugar as people said white bread and white rice becomes sugar... I am still trying to learn what's not "sugary"
In terms of grains.. I don't eat a lot of grainy stuff i think.
Do you believe that if we reduce the inflmmation in our body.. it will do less damage to your intestines ?
The reason why i'm saying that is cause I've always been high on inflmmation levels with my blood test.. and now I read that fish oil helps reducing inflmmation - I didn't have much good effect with it but I am going to try Krill oil now.
I just hope that if I can keep my inflammation levels down.. my crohn's can be controlled..
Yes Colitis and Crohn's Disease are Infammatorry Bowel Diseases. Sugar causes insulin spikes and hence inflammation. Refined carbs like bread and pasta cause inflammation. I try to eat on or two bananas a day and an apple. Fruit is anti inflammatory. Try to eat fish, organic wild caught, not farm raised. Wild salmon is best. Do your best to get nutrients from whole food and only use supplements to supplement your diet. Not an every day thing if possible. This requires a lot of time and cooking and shopping. Cannabis also is anti-inflammatory. Check the medical marijuana threads.
Also, once I got better I was and am still able to "cheat". I ate a pint of icecream last night an had a solid stool today. Imagine! I pretty much eat what I want now but avoid junk food, anything with sugar (except occasional cheats). I eat organic and grass fed butter and eggs. Not just cage free but grass fed eggs. They have twice the healthy omega fats of caged and grain fed chickens. I eat beef and lots of fish. I cook almost all of my own meals and am very picky when dining out or takeout. No chain restaurants or fast food. I cut out all soda drinks. I have one once a week maybe. When I was a kid I could drink a liter a day.
Our food supply is not fit for humans. Look up GMO's and avoid like the plague. Drink lots of pure mineral rich water daily. Read the Water Cure book. Water and sleep are the two most important things after breathing. Then food. If you aren't sleeping properly and are dehydrated non of the other stuff will do anything.
Thanks Johnnyo for your comments.
I am not a big fish eater but I started to eat salmon when I was diagnosed. I mostly rely on my fish oil pill though but I haven't had it for a while - hence now i'm going to start it again with Krill oil.
In terms of fruits my chinese doc told me that I should mainly stick with apples - banana causes gas and it's not good for me when my intestines are trying to heal. Oranges are also acidic.. from what she told me. I haven't been good with soda drinks.. I drank daily before diagnoses and I have cut down quite a lot since then. I'm also a big fan of chips and candies - I can easily finish a bag or 2 within a movie. Now I'm trying to eliminate all types of drinks but only go for Water - and if i want flavour, I go for chinese borths. I'm also trying to cut all the chips, candies, chocolate. It's good that I have my mother that does all the cooking for me for now so I don't have to worry about spending time to cook.
I don't think I lack water as I consume quite a lot throughout the day. Sleep on the other hand... is something that I have a hard time to deal with. I usually sleep for 5/6 hours and I will be wide awake. I also work in different nursing homes and centres with special needs children - from highschool till university I almost stopped all my sports. I am trying to pick that up now so that I could get some "fresh" air or just open up my lungs more.
My whole foods at the moment are chicken and pork. I don't eat too much of it but other than that I try to eat vegs. I don't think I'll be taking any marijunna anytime soon.
I am trying to focus on reducing my inflammation and hoping to get back my solid stool soon.. I'm also trying to tell myself not to worry so much daily and finding a way to learn how to cope with all the stress..
I am not a big fish eater but I started to eat salmon when I was diagnosed. I mostly rely on my fish oil pill though but I haven't had it for a while - hence now i'm going to start it again with Krill oil.
In terms of fruits my chinese doc told me that I should mainly stick with apples - banana causes gas and it's not good for me when my intestines are trying to heal. Oranges are also acidic.. from what she told me. I haven't been good with soda drinks.. I drank daily before diagnoses and I have cut down quite a lot since then. I'm also a big fan of chips and candies - I can easily finish a bag or 2 within a movie. Now I'm trying to eliminate all types of drinks but only go for Water - and if i want flavour, I go for chinese borths. I'm also trying to cut all the chips, candies, chocolate. It's good that I have my mother that does all the cooking for me for now so I don't have to worry about spending time to cook.
I don't think I lack water as I consume quite a lot throughout the day. Sleep on the other hand... is something that I have a hard time to deal with. I usually sleep for 5/6 hours and I will be wide awake. I also work in different nursing homes and centres with special needs children - from highschool till university I almost stopped all my sports. I am trying to pick that up now so that I could get some "fresh" air or just open up my lungs more.
My whole foods at the moment are chicken and pork. I don't eat too much of it but other than that I try to eat vegs. I don't think I'll be taking any marijunna anytime soon.
I am trying to focus on reducing my inflammation and hoping to get back my solid stool soon.. I'm also trying to tell myself not to worry so much daily and finding a way to learn how to cope with all the stress..
5-6 hours of sleep. Boom! There you go. Try to address that and see if yor symptoms improve. There could be underlying anxiety causing insomnia. Your body can't heal without adequate sleep. 5-6 hrs is only healthy for short periods for healthy people not people who are trying to heal. Try meditation, exercise, martial arts, yoga.
Haha JohnnyO,
I feel so much more comfortable after talking to you. Thank you so much. I will make sure I get more sleep if possible. I've never been a big sleeper ever since I was young and I can only sleep in one way so if I turn left or right, I will wake up automatically. I have to sleep flat down.
I am starting to excercise again (even though I'm not sure if it's considered as excercise).. but I am forcing myself to walk around my neighbourhood first thing after I wake up.. and then walking after each meal. Going to do 20 mins of that each time and hopefully I can increase and fall in love with it more later..
I feel so much more comfortable after talking to you. Thank you so much. I will make sure I get more sleep if possible. I've never been a big sleeper ever since I was young and I can only sleep in one way so if I turn left or right, I will wake up automatically. I have to sleep flat down.
I am starting to excercise again (even though I'm not sure if it's considered as excercise).. but I am forcing myself to walk around my neighbourhood first thing after I wake up.. and then walking after each meal. Going to do 20 mins of that each time and hopefully I can increase and fall in love with it more later..
I second everything you said, Adam!
I've been Paleo for just about a year. Whenever I do cheat and sneak in some wheat or corn (darn that popcorn addiction), I can feel the "flaming gut". And I also notice I get more anxious and depressed which in turn winds me up, and makes me more likely to have an episode of symptoms.
It was so hard to make the change to the diet, but now it seems the easiest thing and I actually enjoy food for the first time in decades. This diet, and LDN and supplements prescribed by my ND, have really made a turn around in this disease for me. (My cholesterol levels even improved despite copious bacon eating.)
I'm too lazy to do the juicing, but I have done it before and the documentary you reference is an excellent reference for anyone who wants to try it. We've been sold the Big Business and Big Government line of "you need grains" for so long that people can be scared to try just vegetables, but a body can survive and thrive!
I've been Paleo for just about a year. Whenever I do cheat and sneak in some wheat or corn (darn that popcorn addiction), I can feel the "flaming gut". And I also notice I get more anxious and depressed which in turn winds me up, and makes me more likely to have an episode of symptoms.
It was so hard to make the change to the diet, but now it seems the easiest thing and I actually enjoy food for the first time in decades. This diet, and LDN and supplements prescribed by my ND, have really made a turn around in this disease for me. (My cholesterol levels even improved despite copious bacon eating.)
I'm too lazy to do the juicing, but I have done it before and the documentary you reference is an excellent reference for anyone who wants to try it. We've been sold the Big Business and Big Government line of "you need grains" for so long that people can be scared to try just vegetables, but a body can survive and thrive!
I felt worse in the sense that my main symptoms at the time - diarrhoea, general stomach discomfort and feeling overly full on small amounts of food all deteriorated rapidly and kept getting worse the longer I stayed on the diet. I was underweight when I went on the diet but lost weight on it, to the point where it became dangerous.
JohnyO:
Refined foods like sugar do not cause pain or inflammation for me. And eating all organic, whole foods make me worse if they contain fibre. Eating only low fibre versions makes me feel no different from eating a low fibre diet which includes a lot of processed food. But a diet which includes process food is cheaper and tastes nicer, and it allows me to eat socially with family and friends. It is generally cheaper too. And it does not cause me constant worry about what I'm eating or make me feel confused and disappointed when I'm getting sicker. So I am better off not going on a diet that includes only organic and/or whole foods, etc. and instead eating my "normal" diet.
I agree with you about sleep though. Getting enough sleep is so important to me. I slept over ten hours last night though, which might be taking it a bit too far!
Hey UnXmas,
Thanks for sharing your experience with your diet. To be honest, I don't recall me having worse symptoms when I was eating snacks (candies, coke, ice cream, chips, etc) - but there are so many members here that said that the sugar gives a good living environment for bacterias or something so that it increases inflmmation (correct me if i'm wrong please). In fact, I recall that I will get some firm bowel movements when I'm enjoying a can of coke and a bag of chips.
In terms of Fullness - Am I the only person that doesn't feel hungry/fullness ? I can usually eat at anytime.. and very seldomly I will feel bloated. I think there must be a general idea of how much we should consume in terms of food - if anyone know please share.. cause I can keep on eating and I dont' feel full - and usually I just try to eat until 80%ish (from feeling).
My bowel movements are very weird as well - just last night i had a firm bowel.. but today in the morning as I went to the bathroom, it's watery but stool are formed. I would think that the morning washroom visit should mostly be firm cause i consume my probiotic after my dinner..
I wonder if there's a tutorial in learning how to sleep.. I really need to learn how to as I am always a short sleeper ever since I was young.
Thanks for sharing your experience with your diet. To be honest, I don't recall me having worse symptoms when I was eating snacks (candies, coke, ice cream, chips, etc) - but there are so many members here that said that the sugar gives a good living environment for bacterias or something so that it increases inflmmation (correct me if i'm wrong please). In fact, I recall that I will get some firm bowel movements when I'm enjoying a can of coke and a bag of chips.
In terms of Fullness - Am I the only person that doesn't feel hungry/fullness ? I can usually eat at anytime.. and very seldomly I will feel bloated. I think there must be a general idea of how much we should consume in terms of food - if anyone know please share.. cause I can keep on eating and I dont' feel full - and usually I just try to eat until 80%ish (from feeling).
My bowel movements are very weird as well - just last night i had a firm bowel.. but today in the morning as I went to the bathroom, it's watery but stool are formed. I would think that the morning washroom visit should mostly be firm cause i consume my probiotic after my dinner..
I wonder if there's a tutorial in learning how to sleep.. I really need to learn how to as I am always a short sleeper ever since I was young.
Sugar causes inflammation for everyone. Scientific fact. Eat what you want of course.
I never feel hunger either, but I do feel full. I seem to have various degrees of bloating, fullness and discomfort in my stomach.
I didn't even get hunger when taking prednisone. I usually eat by the clock - breakfast when I get up, lunch at midday, dinner in the evening, or whenever someone else is cooking and the meal is ready, and various snacks and high calorie drinks through out the day. If you're worried about eating to much perhaps that would help - limiting your meals and snacks to specific times, so you only eat a certain number of things each day? I have this problem too - because I always feel full and so end up losing too much weight. It also helps me to make sure I get the right sized meal by either going by the guidance you often find on packaging (e.g. my breakfast cereal box says 30 grams is one portion), or by asking someone else - friends or family - to dish out my helping for me, if it's a home cooked meal.
I've no idea what sugar does to Crohn's inflammation. I don't think eliminating it from your diet will cause significant changes - I don't think it would result in remission, for example. Whether it affects symptoms, I'm not sure. I know that I felt worse giving up sugar, but I also know everyone's illness is different and responds to foods in different ways. And it wasn't the lack of sugar that made me feel worse - it was the foods I was having instead of sugar and refined foods.
I take medication to help me sleep. I know that some people dislike taking too many meds, but it works wonders for me.
JohnnyO
Hi, I realised when rereading my last post I might have phrased it better - I didn't mean to dismiss your approach to food, sorry if it came off that way.
- Location
- Charlotte,
Ace, have you ever tried Quinoa? I know it is a grain but I have heard from people that it doesn't really bother them. Same with brown rice...
What I'm trying next is chocolate.
I've just bought some multipacks of chocolate bars to try and gain some weight. How are you doing with your current diet now? You really deserve to feel better, when you're doing so much to try and get your body healthier. I hope your efforts pay off.
Hi I am new to this forum but not to Crohn's disease. I actually came here today because my son looks like he is about to get his dx. I was fascinated by the talk about the Paleo diet. I was dx is 1997 with Crohn's and have had only two major flares. I am on the anti-Crohns diet. Very high fiber, protein, fruit/veggies and complex carbs. I am not Paleo but big on super foods and antioxidants. Everything I put in my mouth I try and think what can this food do for me. Is it an anti- inflammatory super food, organic, non-GMO, no trans fats etc... I even take FIBER supplements everyday amongst others. It has worked great for me. Just had my semi-annual colonoscopy and was clean as a whistle. On pathology activity is noted but nothing visible to the naked eye. I remember when I first introduced high fiber foods...I would throw them up...it took time to train my GI tract but I did it. Maybe it's just luck but my friend has severe Crohn's and her diet is all low residue refined crap. I applaud you guys who are trying to heal yourself.
I believe diet is a huge factor. I have been doing paleo since january when I was diagnosed. Whenever I deviate from the diet and eat processed, refined or MSG, etc. I will start to see bloody diarrhea and my eczema will flare up.
Recently I've been doing some reading on a whole new approach to diseases and the book states that everything is due to pollutants and parasites. For the past 4 days I have been taking black walnut tincture 5mL twice daily, eating 4 garlic cloves, 30g of ginger and 3 tbsp of turmeric and my bowel movements are becoming frequently solid with noticeably less blood (or none).
for anyone interested in reading the book it's called The Cure for all Diseases by Dr. Hulda Clark
Recently I've been doing some reading on a whole new approach to diseases and the book states that everything is due to pollutants and parasites. For the past 4 days I have been taking black walnut tincture 5mL twice daily, eating 4 garlic cloves, 30g of ginger and 3 tbsp of turmeric and my bowel movements are becoming frequently solid with noticeably less blood (or none).
for anyone interested in reading the book it's called The Cure for all Diseases by Dr. Hulda Clark
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- Location
- Calgary, AB, Canada
This is definitely true. Fruit sugars are absorbed into the body easily.
Hey Johnny,JohnnyO said:
I have tried it, but it was before my Paleo days. Quinoa is unfortunately still a no-no on the Paleo diet. Here is a quote from Robb Wolf (founder of the Paleo diet) as to why:
"Quinoa is botanically not a grain, but because it has evolved in a similar biological niche, Quinoa has similar properties to grains, including chemical defense systems that irritate the gut. In the case of Quinoa, it contains soap-like molecules called saponins. Unlike gluten, which attaches to a carrier molecule in the intestines, saponins simply punch holes in the membranes of the microvilli cells. Yes, that’s bad. Saponins are so irritating to the immune system that they are used in vaccine research to help the body mount a powerful immune response. "
-Adam
Hi acemagic -
I'm brand new to this forum (this is my first post), but I have been following this thread closely. I am going to be starting a paleo diet after completing a 4 week elimination diet (I just started week four and it's been a wild ride), followed by a three day broth fast to give my gut a complete rest before I fully commit to paleo (I'm 90% of the way there already, I just need to give up my organic brown rice breakfast cereal!) Thanks for sharing and keeping us updated on your progress.
Are there any paleo websites/blogs that you look to for recipes that you could recommend? I've poured over Robb Wolf's materials and I think he articulates the paleo diet very well.
Thanks!
I'm brand new to this forum (this is my first post), but I have been following this thread closely. I am going to be starting a paleo diet after completing a 4 week elimination diet (I just started week four and it's been a wild ride), followed by a three day broth fast to give my gut a complete rest before I fully commit to paleo (I'm 90% of the way there already, I just need to give up my organic brown rice breakfast cereal!) Thanks for sharing and keeping us updated on your progress.
Are there any paleo websites/blogs that you look to for recipes that you could recommend? I've poured over Robb Wolf's materials and I think he articulates the paleo diet very well.
Thanks!
Www.robbwolf.com (and "the paleo solution" book is a must)
Www.thepaleodiet.com (Loren, wolf's mentor)
Www.thepaleodiet.com (Loren, wolf's mentor)
Personally I think quino is a great superfood grain...full of protien, fiber and nutrients and so versatile. I also like ezikiel bread. It is the quality of your carbs that counts IMO. I love carbs, I just traded the good ones instead of the bad. But the same could be said for meats too. I will eat organic free range chicken but would not eat bacon. To me there is nothing beneficial in cured,marbled meats full of nitrates. It is all in what you are trying to achieve I guess. I am a nurse and have other health issues ( mild coronary artery disease~inherited ) so I am super conscious about eating an anti-inflammatory diet. But don't think I don't ever cheat. I like dark chocolate and sweets as much as the next person...I just try and pick the best option.
Hey UnXmas,What I'm trying next is chocolate.
How are you doing with your current diet now? You really deserve to feel better, when you're doing so much to try and get your body healthier. I hope your efforts pay off.
It's been 1 week that I've stick with vegs, pork, chicken, salmon, apples, broath, limited white rice, white bread only. (crackers to fill my stomach while I drink the chinese med)
I have been having some random aches and loose Ds (maybe because I was having stressful days or taking the chinese herbal medication) - but this morning i finally had some firm stool (little bit of other things). I am still trying to get my firm stool back.
I have been persistant with my excercise thou - mostly 15-20 mins walk/hand movements after each meal. I believe that helped cause I was able to fall asleep more.. but still only requires about 6-7 hours of sleep and I will be wide awake.
Oh how much do I wish I could take some chocolates.. I was going to the mall to get some manuka honey yesterday and was trying to avoid some of friends that work there - but the more I hide the more they come - saw them with a nice lunch and their first comment was "OMG - You looked so skinny! What's wrong ?"
I hate to answer that question or even just listening to it all the time.
I am still trying to find a way to gain weight...
- Location
- Calgary, AB, Canada
I use www.paleohacks.com very frequently. It's basically a forum (similar to this one), where you can ask a question and have it answer by other Paleo people. Msot of them are there for weight loss, but there is plenty of info on Crohn's.
I can definitely relate to this! I get the exact same way if my guts are in rough shape. Remember my salad story from a couple of weeks ago? I was already hurting from eating pizza, and then ate salad the next day because I wanted to go back onto my diet, and I had to take 2 Tylenol 3's because it was so terrible. I felt bloated, awful and gassy. So I went onto a liquid diet for 2 days, and gradually increased food intake, and now I can eat a salad without issue. I think it's all a matter of bowel rest and healing before your intestines can handle healthy foods once again.OzBoz said:
-Adam
To gain weight Try eating grass fed butter (kerygold)and lots of meat and potatoes. Organic polenta/Grits are good too with butter.
My first attempt at using diet to control GI symptoms years ago was to follow the yeast connection candida diet (on advice of a friend). It was a very strict no-carb diet that was hard to follow. It didn't immediately fix my GI tract (which wasn't that bad at the time anyway), but after a week or so I no longer felt like I had the flu all the time (extremely tired, achy, etc) and my GI symptoms started to improve. Not long after that I found that sacchomyces boulardii helped me more than any other probiotic or supplement and that once I've been on it for a while, some cheating on the low-carb part of my diet was tolerable.
I know some people here are very sick and maybe past the point where diet alone is going to help, but for people who aren't too sick or don't have too much damage yet, I think that extreme diets are better than strong drugs, even though it's kind of sad to sit at a table and drink water while your friends have pizza and beer....
I know some people here are very sick and maybe past the point where diet alone is going to help, but for people who aren't too sick or don't have too much damage yet, I think that extreme diets are better than strong drugs, even though it's kind of sad to sit at a table and drink water while your friends have pizza and beer....
I too have noticed benefits from S Boulardii
SN8888 and JohnnyO,
Could you please provide me with which product do you take that contains S Boulardii ?
I would really want to give this a try.
I always thought it would be best to have a variety of strains of probiotic, but if this particular strain helps... I wouldn't mind checking it out.
By benefits do you mean weight gain, less pain, d, etc ?
Please share !
Could you please provide me with which product do you take that contains S Boulardii ?
I would really want to give this a try.
I always thought it would be best to have a variety of strains of probiotic, but if this particular strain helps... I wouldn't mind checking it out.
By benefits do you mean weight gain, less pain, d, etc ?
Please share !
It's actually a beneficial Yeast that can keep bad bacteria at bay. It's called S Boulardii
From Wikipedia:
Saccharomyces boulardii is a tropical strain of yeast first isolated from lychee and mangosteen fruit in 1923 by French scientist Henri Boulard. It is related to, but distinct from, Saccharomyces cerevisiae in several taxonomic, metabolic, and genetic properties.[1]S. boulardii has been shown to maintain and restore[citation needed] the natural flora in the large and small intestine; it is classified as a probiotic. However, in immunocompromised and immunosupressed patients, it can cause disease in the form of a systemic blood infection, fungemia, or localized infection[citation needed].
From Wikipedia:
Saccharomyces boulardii is a tropical strain of yeast first isolated from lychee and mangosteen fruit in 1923 by French scientist Henri Boulard. It is related to, but distinct from, Saccharomyces cerevisiae in several taxonomic, metabolic, and genetic properties.[1]S. boulardii has been shown to maintain and restore[citation needed] the natural flora in the large and small intestine; it is classified as a probiotic. However, in immunocompromised and immunosupressed patients, it can cause disease in the form of a systemic blood infection, fungemia, or localized infection[citation needed].
Hey JohnnyO
So does it come in a probiotic pill form ? or is it something else ?
I can only find a brand called "Florster" that has this "S Boulardii"
Are there other brands that I could try ? The Florster is off the counter in Toronto but it's quite expensive - I believe it's around $1 for a pill.
So does it come in a probiotic pill form ? or is it something else ?
I can only find a brand called "Florster" that has this "S Boulardii"
Are there other brands that I could try ? The Florster is off the counter in Toronto but it's quite expensive - I believe it's around $1 for a pill.
It sounds like you're doing great with the exercise, but will you be able to gain weight while limited to those foods? Or is it that you're hoping to settle your symptoms down with the diet first, and add more things later? Sorry, you've probably said this already.
I've had comments like that, but usually from strangers. People on the street shout out "anorexic" - that's happened to me at least three times. I think people who know me are so used to seeing me underweight that they don't expect anything else.
Chocolate is working great for me.
I hadn't eaten it for a very long time, I'm not really sure why, I think I imagined it to be too rich and filling (I hate feeling so overly full all the time). But tasting it again after a long time without made me realise it's good to eat it, even if it does fill me up. I actually had a chocolate bar for breakfast this morning. I know I'm trying to gain weight, but even I'm not sure that chocolate bars for breakfast is that healthy. I hope your improvements continue and that you'll be able to expand your diet soon.
Hey UnXmas,
Thank you for your support. At the moment gaining weight and settling my symptoms are my priority. I am trying hard to make sure I eat well - but my D symptoms seems to be reappearing again. I am not sure what other food I should introduce even when my bowel movements are twice a day now (even with the D). I am not sure if my gut is irritated or is D part of the schedules.. but I am hoping to eat a larger variety of food soon. I am not sure if it's rice or bread that's giving me the problems but I have been eating these two types of food ever since I was 5 or so.
In terms of chocolate, I would love to have some too. I have just been limiting myself to eating any kinds of "Snacks". At the moment I only have crackers as my snack...
Do you take Dark chocolate or just regular ? I did read an article somewhere that eating dark chocolate does regular some of your bacterias in your gut or something..
Thank you for your support. At the moment gaining weight and settling my symptoms are my priority. I am trying hard to make sure I eat well - but my D symptoms seems to be reappearing again. I am not sure what other food I should introduce even when my bowel movements are twice a day now (even with the D). I am not sure if my gut is irritated or is D part of the schedules.. but I am hoping to eat a larger variety of food soon. I am not sure if it's rice or bread that's giving me the problems but I have been eating these two types of food ever since I was 5 or so.
In terms of chocolate, I would love to have some too. I have just been limiting myself to eating any kinds of "Snacks". At the moment I only have crackers as my snack...
Do you take Dark chocolate or just regular ? I did read an article somewhere that eating dark chocolate does regular some of your bacterias in your gut or something..
Monmon I just bought theese cheap and seem to do the job well I also take lactoasilis lgg at night but here's the link to where I get mine from
http://www.evitamins.com/saccharomyces-boulardii-now-60-caps-23869
http://www.evitamins.com/saccharomyces-boulardii-now-60-caps-23869
I had just ordinary milk chocolate. I've read somewhere that dark chocolate has some health benefits too. Maybe I'll give that a try as well.
As for which food's giving you problems (and again, I'm sorry if you've said this already somewhere further back on the thread), have you been tested for coeliac disease, as that could give you problems with bread if it's bread from wheat. I wouldn't have thought rice would be responsible as it's often cited as a food that's easy to digest, white rice especially.
Some foods that I find easy to digest:
Avocado - not a huge number of calories, but far more than most fruits and veg, and a low fibre diet makes it hard to find suitable fruit and veg.
Peanut butter - this is one of favourites for putting weight on - it's easy to digest (as long as it's the smooth kind) and full of calories, but the "good" kind of fats.
Are you alright with dairy/lactose? If you are, I find puddings like ice cream and custard are much easier to eat than solid foods, if you're feeling ill and don't feel like eating.
And another thing that's not too hard to digest is low fibre breakfasts cereals, like cornflakes, rice krispies, etc.
Did you say you're trying to eliminate processed food? If so I guess some of these foods aren't helpful, but they're not that unhealthy, so if you need some other foods for a bit while you're gaining weight, they might be useful.
Hey Ozboz - Thank you for sharing that with me ! I will look in to ordering some !
UnXmas - I finally broke my "diet" yesterday and ate some peanut butter ice cream. It felt great as I was limiting myself to eat a certain few things last week.
I am alright with dairy and lactose items - I have never experienced a problem with it.
I also ate two pieces of bread with almond butter.
This morning it seems like my stool is formed but still runny.
My gut is so weird. It's hard to predict what's the right or wrong food.
UnXmas - I finally broke my "diet" yesterday and ate some peanut butter ice cream. It felt great as I was limiting myself to eat a certain few things last week.
I am alright with dairy and lactose items - I have never experienced a problem with it.
I also ate two pieces of bread with almond butter.
This morning it seems like my stool is formed but still runny.
My gut is so weird. It's hard to predict what's the right or wrong food.
Mine too. It took me forever to work out that too much fibre makes me worse. You'd think it would be easy to tell, but when reactions are delayed and other factors beside diet influence symptoms, it really is a long road of trial and error.
I always tended to assume symptoms were reactions to food when most of the time, for me, they really aren't
I hope you continue to enjoy your food and feel better.
I looked up the health benefits of dark chocolate. This is from the Cleveland clinic web site:
I'm not sure if those benefits are particularly related to Crohn's in any way, but I really feel like having dark chocolate now!
http://my.clevelandclinic.org/heart/prevention/nutrition/chocolate.aspx
I'm not sure if those benefits are particularly related to Crohn's in any way, but I really feel like having dark chocolate now!
- Location
- Calgary, AB, Canada
Hey guys,
Be careful when doing all the introductions of new foods, especially junk foods! Dairy, peanut butter, and breakfast cereals are all not paleo friendly and could irritate the gut in the long run. I find I can't do cereal at all any more.
Regarding the weight gain: Weight loss is a matter of malabsorption. Us crohnies can't absorb much because our intestines are in such rough shape. For a NORMAL person, a diet of meat and veggies, high in protein, lots of calories, combined with some light exercise will make them gain weight. But because our guts aren't in good shape, that won't work for us without healing ourselves first.
I guess what I'm saying is... would you rather feed your sick gut junk food to gain weight (like chocolate, chips, dairy, etc) or heal the gut, which will make it absorb things better, and then gain weight by eating chicken, steak, rice and veggies?
Option 1 will only work in the short term. I'm speaking from experience here too. 12 years of crohns. The only time I ever gained weight was when I gobbled down copious amounts of junk food. The result was surgery every 3 years. When I started Paleo a year ago, I was 127 lbs, and I STAYED 127 lbs for about 9 months. I had resolved to just never gain any weight. I weighed myself a couple of weeks ago and Im suddenly 135 lbs. My theory is that my gut is getting significantly better and starting to absorb nutrients again.
-Adam
Be careful when doing all the introductions of new foods, especially junk foods! Dairy, peanut butter, and breakfast cereals are all not paleo friendly and could irritate the gut in the long run. I find I can't do cereal at all any more.
Regarding the weight gain: Weight loss is a matter of malabsorption. Us crohnies can't absorb much because our intestines are in such rough shape. For a NORMAL person, a diet of meat and veggies, high in protein, lots of calories, combined with some light exercise will make them gain weight. But because our guts aren't in good shape, that won't work for us without healing ourselves first.
I guess what I'm saying is... would you rather feed your sick gut junk food to gain weight (like chocolate, chips, dairy, etc) or heal the gut, which will make it absorb things better, and then gain weight by eating chicken, steak, rice and veggies?
Option 1 will only work in the short term. I'm speaking from experience here too. 12 years of crohns. The only time I ever gained weight was when I gobbled down copious amounts of junk food. The result was surgery every 3 years. When I started Paleo a year ago, I was 127 lbs, and I STAYED 127 lbs for about 9 months. I had resolved to just never gain any weight. I weighed myself a couple of weeks ago and Im suddenly 135 lbs. My theory is that my gut is getting significantly better and starting to absorb nutrients again.
-Adam
I do really appreciate what you're saying. But it never worked for me. I didn't follow a specific diet like paleo, but I did spend a long time following nutritionists' advice, eating only organic whole foods, eliminating dairy, gluten, and all junk food, with sugar coming only from fruits. My diet was limited to fruit and veg and lean protein. For a while I ate nuts and seeds as well, but they gave me diarrhoea so bad that I could tell they were not good for me and stopped eating them.
Not only did it not make me feel better or heal my intestine, it made me feel a lot worse. I really couldn't manage to take in enough calories on that diet. I need food to be calorie-dense and palatable, because I have such a poor appetite. I don't object to the taste of most fruit and veg or other healthy foods, but when my digestion is really bad and my stomach hurting, it's so much easier to eat a bowl of ice cream or some plain biscuits than it is to sit down and eat a plate of fish and vegetables.
I tried variations of the healthy diet you describe extensively, and it just never worked. My intestines just didn't heal. My weight drops to the point where I have a bmi of only 12 or 13 sometimes. Even if it was possible to heal my intestine with diet, I just can't take the risk of losing weight on the possibility that later I'll be in a better state and able to eat more.
I've now been eating a conventional normal diet for a few years, and I'm better than I ever was eating super-healthy. I still have a lot of trouble gaining weight, but at least I'm eating food that's easy and tastes nice, so the pressure of knowing I must get in more calories each day is less than it would be if my diet was very restricted.
Eating junk in moderation really is the best type of diet for me, both physically and mentally.
My buddy has crohns and je just had his first solid stool in over a year. He has been on SCD for 6 weeks and no gluten or dairy for 8 weeks.
For those of you who are following a paleo diet, are you eating eggs? I have been researching paleo vs. autoimmune paleo and eggs seem to be considered a no-go for AI Paleo.
I am going to be re-introducing eggs later this week after a 4-week elimination diet and I'm hoping they agree with me. If I can't eat eggs, I have no idea how I'll get through breakfast!
I am going to be re-introducing eggs later this week after a 4-week elimination diet and I'm hoping they agree with me. If I can't eat eggs, I have no idea how I'll get through breakfast!
Hi loving the coast
I've stopped eggs until its under control and ill reintroduce when I am in remission. Unfortunately I am un diagnosed and in a flare (they know I have IBD) but I'm waiting for them to send me for tests before they'll treat me so paleo is all I have. Every time I eats
Stomach balloons paleo seems to be working alongside researching anti-inflammatory foods (eg fish oil tablets supplementing) but I am in desperate need of medical help! I've followed paleo strictly for a yr or two on the run up to competitions and it makes
Me feel amazing of course now this has happened ill be following it forever. I hate this disease: it doesn't like doing any of the things I like doing (eating, eating sugar, eating quickly)
I've stopped eggs until its under control and ill reintroduce when I am in remission. Unfortunately I am un diagnosed and in a flare (they know I have IBD) but I'm waiting for them to send me for tests before they'll treat me so paleo is all I have. Every time I eats
Stomach balloons
paleo seems to be working alongside researching anti-inflammatory foods (eg fish oil tablets supplementing) but I am in desperate need of medical help! I've followed paleo strictly for a yr or two on the run up to competitions and it makesMe feel amazing
of course now this has happened ill be following it forever. I hate this disease: it doesn't like doing any of the things I like doing (eating, eating sugar, eating quickly)I am not sure why exactly that would happen - hopefully it would be a sign of things getting better (less urgency). I guess the real question is what is the safest, most gentle way to improve the situation (stool softeners?). For me, vitamin supplements containing magnesium can send me to the bathroom presumably due to an osmotic effect (which seems like it should be more gentle than fiber supplements or something like that).
acemagic - I think UnXmas makes an excellent point. What works for one person doesn't always work for another. There are many kinds of "good" food versus "junk" food. I can't do the Paleo diet either because right now I cannot tolerate raw veggies or hard protein like beef and pork. I tried for months and got worse and worse. Just because a food is considered "banned" by one diet doesn't make it bad. Paleo does not allow peanut butter, but it is a good source of healthy fat and protein for those who can tolerate it and need the calories and fat. White rice doesn't have as much nutritional value as others, and it is a carb, but again it is a decent food source for those who can't find much to eat that is tolerated (like myself).
Believe me, I'd love to eat my big, raw-veggie-piled-up salads again. I miss the meats I used to eat. Chicken and rice and fish get pretty boring. But I know my body, and it's telling me that I cannot eat those things because I have a lot of pain when I try. Kefir milk is excellent for the gut, easily tolerated, and another good source of calories as well.
I think the lesson here is to find what works for each individual.
Believe me, I'd love to eat my big, raw-veggie-piled-up salads again. I miss the meats I used to eat. Chicken and rice and fish get pretty boring. But I know my body, and it's telling me that I cannot eat those things because I have a lot of pain when I try. Kefir milk is excellent for the gut, easily tolerated, and another good source of calories as well.
I think the lesson here is to find what works for each individual.
well I gave the probiotics a rest for a few days. Then today was like I took a prep for a colonoscopy Ihaven't seen this much stool come out in ages and all I wanted to do was sleep all day then I was in the toilet for an hour and so much stool reckon I passed a kilo of stool easy what the hell is going on at least was mostly formed and no blood thank goodness
To which part of dairy are you intolerant? Kefir milk is 99% lactose free, and the casein is destroyed in the fermentation process as well. I am lactose intolerant and casein gives me pain and bloating as well, but I tolerate kefir milk well. I make my own yogurt with lactose-free milk and tolerate that very well also. I can't eat cheese or eat even lactose-free dairy products if there is casein present, but those two products (kefir and the homemade yogurt) both do very well for me. Kefir has the added bonus of giving you the probiotics as well.
- Location
- Calgary, AB, Canada
Hey LtC!
Eggs on AI Paleo is a no-no, unless your body can tolerate it. For me, it's cut and dry...if I eat eggs, I have to go to the bathroom almost immediately afterwards, like clockwork. I try to avoid them, but I still give in once in a while. scrambled seems to be less irritating than other methods of cooking.
For breakfast, I've been having juic, fruits, and the PaleoKrunch cereals from www.stevesoriginal.com
-Adam
- Location
- Calgary, AB, Canada
Hey mccindy!
I couldn't agree more. I'm simply advising caution. Although things might feel well tolerated in the short term, they may be doing damage in the long term. An extreme, but somewhat relevant example is smoking. I've heard that crohn's sufferers who smoke actually get some benefit from it, because it relaxes them, but obviously, in the long term, it could be doing some damage, even though you don't feel it in the short term.
If you're following a diet like paleo or SCD and you start re-introducing new foods, but still feel okay, it doesn't necessarily mean that it's good for you, or your gut. It could be doing long term damage.
That being said, I don't really have any sage advice on how to reintroduce new foods safely, besides doing it excruciatingly slowly (introduce 1 new food a month or something), but even that isn't flawless. It'll be a struggle.
-Adam
Thanks for your insight, low fibre is of course a great way to control the disease. And you have obviously taken a lot of time to research.
But what you are actually talking about here is 'managing' symptoms...not actually 'curing' the disease.
And unfortunately a lot of us go through terrible re-lapses no matter what we eat.
My longest period of remission:
14-22
High doses of Imuran
Too much alcohol (and the occasional recreational drug i'm ashamed to admit here)
Basic diet (Sara lee chocolate gateau, student food, beans...i can't particularly remember to be honest)
Latest re-lapse 22-25
Very good balanced diet with little to no fibre.
Very limited to no alcohol
No drugs. (Not the good ones anyway)
Having said all that, of course I am going to revise my diet post surgery because I don't want to go through it anymore. I do believe I can manage my disease better. But western medicine isn't withholding a cure here, there simply isn't one at present.
But what you are actually talking about here is 'managing' symptoms...not actually 'curing' the disease.
And unfortunately a lot of us go through terrible re-lapses no matter what we eat.
My longest period of remission:
14-22
High doses of Imuran
Too much alcohol (and the occasional recreational drug i'm ashamed to admit here)
Basic diet (Sara lee chocolate gateau, student food, beans...i can't particularly remember to be honest)
Latest re-lapse 22-25
Very good balanced diet with little to no fibre.
Very limited to no alcohol
No drugs. (Not the good ones anyway
)Having said all that, of course I am going to revise my diet post surgery because I don't want to go through it anymore. I do believe I can manage my disease better. But western medicine isn't withholding a cure here, there simply isn't one at present.
Thanks Adam. I've reintroduced eggs over the last few days and I have pain and bloating all over again. It's discouraging after being so diligent and dedicated on the 4 week elimination diet, and three-day bone broth fast. During the fast, all pain vanished (for the first time in years, I felt pain free!) and then BOOM! pain is back. Dull, terrible evil crohn's ache. I guess eggs are out for me
Is the paleokrunch cereal okay for you? With ingredients like raw seeds and coconut, I feel like I would be setting myself up for pain-city and a partial blockage (I have a stricture and try and eat generally low fibre/low residue).
Also - how are you doing with paleo these days? Are you feeling well?
It's always interesting to see how different everyone's bad foods are. Eggs are just fine for me. Breakfast is one of the easiest meals for me, as there are lots of breakfast cereals I can tolerate (no bran or muesli or ones with nuts etc.), and dairy is no problem so I can have ordinary cows milk, or I can easily eat toast from white bread, butter's fine for me too and most jams, spreads, etc. so I have quite a lot of options to choose from.
Acemagic -
How are things going for you? I've been Paleo for 6 weeks now and I am feeling discouraged. My bowel movements are completely abnormal - I will goes days without, and then have one that's loose and not good. My energy is great at times, but other days I have a food hangover if I've eaten anything that is even slightly non-Paleo (ie. a paleo choc chip cookie - the choc chips having dairy/sugar in them).
Any advice? Are you doing well?
Also - I've had three partial obstructions since I started this diet (in about 4 weeks) This is more than ever, and close together. I am keeping my diet as low residue as possible b/c of my stricture, but I am starting to feel sort of helpless....
How are things going for you? I've been Paleo for 6 weeks now and I am feeling discouraged. My bowel movements are completely abnormal - I will goes days without, and then have one that's loose and not good. My energy is great at times, but other days I have a food hangover if I've eaten anything that is even slightly non-Paleo (ie. a paleo choc chip cookie - the choc chips having dairy/sugar in them).
Any advice? Are you doing well?
Also - I've had three partial obstructions since I started this diet (in about 4 weeks) This is more than ever, and close together. I am keeping my diet as low residue as possible b/c of my stricture, but I am starting to feel sort of helpless....
- Location
- Calgary, AB, Canada
Hello all,
The results are in.
I just got back from my Colonoscopy a few hours ago.
It's been a year long journey of trying my best to stick with a healthier diet, introducing Low Dose Naltrexone, and even some medical marijuana, among other things. One full year of avoiding any "approved drugs".
Before I get to the results, I have to admit to everyone that although I've been trying to stick with a regimen of eating Paleo friendly, I have had my slip ups and my temptations. I still am doing my best, but there have been times where I either had no options or just didn't feel like cooking on a particular night, so I couldn't stay strict.
I've also been on 4.5 mg of Low-dose Naltrexone for the last 9 months.
Okay, so here are the results:
Unfortunately, my crohn's is back. Only one year after surgery. I don't often feel it (very little cramping), but I have terrible gas some days, depending on what I eat. I think going back to the drawing board is in order. I think 9.5 months of LDN is enough to prove to me that it isn't doing anything, (sorry LDN friends!), so I think I will discontinue.
I'm going to continue striving forward with the dieting, and really trying to be a little more strict on myself. If nothing else, it has boosted my energy levels here and there.
I'm going to try and find a natural "reset switch" for myself. Maybe a cleanse or something. I feel like my body is out of whack. Along with Crohn's I've been developing these tonsil stones and my tongue has a white coating and a coppery taste. I feel like my body is trying to tell me something, but I'm not smart enough to know what it is. I've got an appointment with a naturopath on Friday, so hopefully I come back with something.
I'm also going to try and introduce more digestive enzymes & more probiotics.
But I also now need to listen to my doctor and probably try Humira, which scares the crap out of me, due to it's cancer causing side effects. But I think I'm out of options.
So there you have it! Energy wise, I feel fine, but my body is starting to crap out again. I'm sure that's not the result that a lot of you wanted to hear (neither did I), but I promised to stay honest with all of you throughout this journey. I hope that those of you who are having success on Paleo continue to stick to it and report back with any news you find. Thanks to everyone who has followed this thread along, and I'll continue to post information as I find out more.
Cheers!
-Adam C
The results are in.
I just got back from my Colonoscopy a few hours ago.
It's been a year long journey of trying my best to stick with a healthier diet, introducing Low Dose Naltrexone, and even some medical marijuana, among other things. One full year of avoiding any "approved drugs".
Before I get to the results, I have to admit to everyone that although I've been trying to stick with a regimen of eating Paleo friendly, I have had my slip ups and my temptations. I still am doing my best, but there have been times where I either had no options or just didn't feel like cooking on a particular night, so I couldn't stay strict.
I've also been on 4.5 mg of Low-dose Naltrexone for the last 9 months.
Okay, so here are the results:
Unfortunately, my crohn's is back. Only one year after surgery. I don't often feel it (very little cramping), but I have terrible gas some days, depending on what I eat. I think going back to the drawing board is in order. I think 9.5 months of LDN is enough to prove to me that it isn't doing anything, (sorry LDN friends!), so I think I will discontinue.
I'm going to continue striving forward with the dieting, and really trying to be a little more strict on myself. If nothing else, it has boosted my energy levels here and there.
I'm going to try and find a natural "reset switch" for myself. Maybe a cleanse or something. I feel like my body is out of whack. Along with Crohn's I've been developing these tonsil stones and my tongue has a white coating and a coppery taste. I feel like my body is trying to tell me something, but I'm not smart enough to know what it is. I've got an appointment with a naturopath on Friday, so hopefully I come back with something.
I'm also going to try and introduce more digestive enzymes & more probiotics.
But I also now need to listen to my doctor and probably try Humira, which scares the crap out of me, due to it's cancer causing side effects. But I think I'm out of options.
So there you have it! Energy wise, I feel fine, but my body is starting to crap out again. I'm sure that's not the result that a lot of you wanted to hear (neither did I), but I promised to stay honest with all of you throughout this journey. I hope that those of you who are having success on Paleo continue to stick to it and report back with any news you find. Thanks to everyone who has followed this thread along, and I'll continue to post information as I find out more.
Cheers!
-Adam C
Hi Ace:
The white coating on your tongue is most likely trush (candida) due to an imbalance of yeast in your body. My daughter goes to a osteopathic doctor and she recommended anti-candida tablets, probiotics, L-Glutimine & S. Boulardii. She has continued to take vitamin D3 & folic acid for the past six months, which stopped the bleeding she was experiencing. She recently stopped taking the D3 & folic acid for two days and the bleeding started up again, so she will not stop her D3 supplements ever again. As with you, her GI has recommended Humira, but she continues to refuse to take it. She still has runny stools many times a day, but is hoping that between her diet & supplements, she will eventually get that under control.
Please continue to post your experiences as I, and I am certain many others, have gained many insights as a result of your posts.
Wishing you all the best!
Lisa
The white coating on your tongue is most likely trush (candida) due to an imbalance of yeast in your body. My daughter goes to a osteopathic doctor and she recommended anti-candida tablets, probiotics, L-Glutimine & S. Boulardii. She has continued to take vitamin D3 & folic acid for the past six months, which stopped the bleeding she was experiencing. She recently stopped taking the D3 & folic acid for two days and the bleeding started up again, so she will not stop her D3 supplements ever again. As with you, her GI has recommended Humira, but she continues to refuse to take it. She still has runny stools many times a day, but is hoping that between her diet & supplements, she will eventually get that under control.
Please continue to post your experiences as I, and I am certain many others, have gained many insights as a result of your posts.
Wishing you all the best!
Lisa
- Location
- Charlotte,
Hey man, sorry to hear about this, I was really pulling for you. I will say that I was on Remicade for 5 years, and those were 5 of the healthiest years of my life, I could literally function as a normal person, with the exception of going to get the infusions every 8 weeks. But, like many others, side effects (for me, Multile Scleorsis or perhaps something similar that looks like MS) forced me off of it I know it was working because a couple of months after I was off of it, I went downhill pretty fast. Like you, I am trying to go the path of diet, but I am also now on Tysabri ( grrrrrrrr.) because it treats Crohn's and MS, and I must admit, I feel great once again.
These meds are like an oxymoron. They are so wonderful, unless they kill you with cancer or something like that (hopefully people are not too scared by that comment, I have a very dry sense of humor). And to be completely honest, if I had to do the Remicade all over again, i actually might, because that is how good it made me feel....I know it doesn't work for everyone, but for me, I had forgotten how great it was to have energy and not spend days holed up in bed with fevers and the D.
Now, I am just waiting for Vedolizumab to be approved (it is like Tysabri but "allegedly" a lot safer)
Sometimes I wonder if having Crohn's is like having a broken leg. What I mean by that is, there may be 10 different people with broken legs, all of which broke their leg in a different way. I am starting to be convinced that there are MANY different factors that can lead to Crohn's, and that is why so many people have so many different responses to so many different things (Paleo, imuran, biologics, LDN, SCD, etc.)
Right now, I am doing Vegan plus fish, and I have to admit, I feel great (except when people around me are eating delicious things like bacon, etc.) I supplement with vitamin D (we should ALL be doing that), S. Boulardi, exercise, and cannabis. Next step, meditation, as I have been researching this a lot lately.
Wow, long post, sorry for the book.
I know it was working because a couple of months after I was off of it, I went downhill pretty fast. Like you, I am trying to go the path of diet, but I am also now on Tysabri ( grrrrrrrr.) because it treats Crohn's and MS, and I must admit, I feel great once again.These meds are like an oxymoron. They are so wonderful, unless they kill you with cancer or something like that (hopefully people are not too scared by that comment, I have a very dry sense of humor). And to be completely honest, if I had to do the Remicade all over again, i actually might, because that is how good it made me feel....I know it doesn't work for everyone, but for me, I had forgotten how great it was to have energy and not spend days holed up in bed with fevers and the D.
Now, I am just waiting for Vedolizumab to be approved (it is like Tysabri but "allegedly" a lot safer)
Sometimes I wonder if having Crohn's is like having a broken leg. What I mean by that is, there may be 10 different people with broken legs, all of which broke their leg in a different way. I am starting to be convinced that there are MANY different factors that can lead to Crohn's, and that is why so many people have so many different responses to so many different things (Paleo, imuran, biologics, LDN, SCD, etc.)
Right now, I am doing Vegan plus fish, and I have to admit, I feel great (except when people around me are eating delicious things like bacon, etc.) I supplement with vitamin D (we should ALL be doing that), S. Boulardi, exercise, and cannabis. Next step, meditation, as I have been researching this a lot lately.
Wow, long post, sorry for the book.
- Location
- Calgary, AB, Canada
Rockdawg,
Your post inspires me. You mentioned you're on a very restrictive diet and feeling great. So I guess my question is: why bother with meds if you're responding to dietary changes?
-Adam
Your post inspires me. You mentioned you're on a very restrictive diet and feeling great. So I guess my question is: why bother with meds if you're responding to dietary changes?
-Adam
- Location
- Charlotte,
Ace,
It went down like this. I was on the Remicade and doing great. Then, my right eye started to hurt and I started to lose the ability to see color out of it. I had to have an MRI, which revealed some lesions on my brain (this is how they diagnose MS). They immediately took me off the Remicade, and told me I needed another MRI in 6 months. The 2nd MRI showed more lesions, at which point the diagnosis of MS was made. During this time, I started getting sicker and sicker...running really high fevers and feeling Crohnsy. Missing a lot of work and ended up in the emergency room because of the fever. At that point, I went on the Tysabri, because it treats both MS and Crohn's. I also started a vegan diet plus fish, as I read a lot about it in relation to Western disease (see the China Study, etc.)
Don't know if it is diet or Tysabri, but I am doing great now...hope that helps.
It went down like this. I was on the Remicade and doing great. Then, my right eye started to hurt and I started to lose the ability to see color out of it. I had to have an MRI, which revealed some lesions on my brain (this is how they diagnose MS). They immediately took me off the Remicade, and told me I needed another MRI in 6 months. The 2nd MRI showed more lesions, at which point the diagnosis of MS was made. During this time, I started getting sicker and sicker...running really high fevers and feeling Crohnsy. Missing a lot of work and ended up in the emergency room because of the fever. At that point, I went on the Tysabri, because it treats both MS and Crohn's. I also started a vegan diet plus fish, as I read a lot about it in relation to Western disease (see the China Study, etc.)
Don't know if it is diet or Tysabri, but I am doing great now...hope that helps.
- Location
- Charlotte,
The crux is this...I refuse to be on the Tysabri for more than a year, because of the potentially fatal side effects. Well, in December, that will be a year, so I am not really sure how this will play out, but for now I feel great.
I developed Hodgkin's Lymphoma while on 6mp and Remicade. Not trying to scare anyone either, but the side effects are very real. That said, it didn't kill me and I lived to fight Crohn's another day. This time with Methotrexate.
Thanks for investigating the paleo diet for us, Adam.
Hello All,
Spent the last hour or so reading through this thread and registered specifically to comment. My journey is fairly similar to Adam's and I wanted to share a parallel experience.
I was diagnosed with CD in 2009 and shortly thereafter I developed an abscess that I thought was a hemmorhoid for the better part of 3 years. When I told my GI he didn't even bother to look he just prescribed me a suppository. Glad I don't go to him anymore. Anyways, my CD was fairly manageable after the initial diagnosis and I made the mistake of not taking it very seriously. Last August I moved to Boston where my new GI immediately told me the hemorrhoid was a fistula and scheduled surgery. It was after this that I decided to take matters into my own hands.
I didn't want to start on Remicade or Humira because of the scary side effects so I started on a very strict SCD in November of 2012. I had immediate success. I was having one BM a day and it was typically solid. I sang the praises of SCD wherever I went as I had never felt better in my life. In my 7 months of remission, I never cheated once as this is key to the diet working.
In May 2013, while in remission, I decided to try acupuncture. That very night I had D for the first time since starting the diet. I immediately made tweaks thinking I could get things under control. I soon found out I couldn't. My symptoms became worse than they were even before my diagnosis. Blood in my stools, insane cramping, and just a general miserable existence. No doctor could offer an explanation of why acupuncture might have triggered this, most just guessed it was a timing thing.
After 3 weeks of suffering, I contacted my GI who started me on Entocort. Slight improvements, but far from normal. 2 weeks later he switched me to Prednisone. Again, slight improvements but the side effects are hell. I can't sleep and the bloating and gas pains have returned. To make matters worse, SCD had helped me drop from a chubby 205 to a healthy 165 and now that I am flaring, I am down to 147 and cant do anything to stop it. I have resorted to spooning coconut oil and avocado to try to keep weight on.
My GI is now pushing for Remicade. I am obviously disheartened because I just fought a war for 8 months to avoid just that. My last alternative has been turning to some integrative doctors who are looking more at the root cause rather than treating my symptoms. I spoke with a Dr. for over an hour today who flat out told me "SCD/PALEO/GAPS do not work." She claims that these diets allow way too many carbs in the form of fruits and honey that essentially just break down into sugar. Why it worked for me for so long and then suddenly failed, I have no idea. She is working up a new diet for me that will further restrict things, taking out fruits and high sugar veggies such as beets and carrots. This was already a trying 8 months so I am pretty bummed about restricting my diet further. We also discussed the possibility of fecal transplant and some other stuff as well. All in all, I don't know what to think. I am trying to get an appointment with an integrative Dr. in NY almost 4 hours away who has had great success treating patients with digestive enzymes, fatty acids and a bunch of stuff I don't understand.
I am hoping for one more shot at remission before caving in to the Remicade and risking lymphoma and all the other terrible side effects. I'll try to come back and update this thread to let people know what I learned after I meet with this doc. But yea, just my story so far...
Spent the last hour or so reading through this thread and registered specifically to comment. My journey is fairly similar to Adam's and I wanted to share a parallel experience.
I was diagnosed with CD in 2009 and shortly thereafter I developed an abscess that I thought was a hemmorhoid for the better part of 3 years. When I told my GI he didn't even bother to look he just prescribed me a suppository. Glad I don't go to him anymore. Anyways, my CD was fairly manageable after the initial diagnosis and I made the mistake of not taking it very seriously. Last August I moved to Boston where my new GI immediately told me the hemorrhoid was a fistula and scheduled surgery. It was after this that I decided to take matters into my own hands.
I didn't want to start on Remicade or Humira because of the scary side effects so I started on a very strict SCD in November of 2012. I had immediate success. I was having one BM a day and it was typically solid. I sang the praises of SCD wherever I went as I had never felt better in my life. In my 7 months of remission, I never cheated once as this is key to the diet working.
In May 2013, while in remission, I decided to try acupuncture. That very night I had D for the first time since starting the diet. I immediately made tweaks thinking I could get things under control. I soon found out I couldn't. My symptoms became worse than they were even before my diagnosis. Blood in my stools, insane cramping, and just a general miserable existence. No doctor could offer an explanation of why acupuncture might have triggered this, most just guessed it was a timing thing.
After 3 weeks of suffering, I contacted my GI who started me on Entocort. Slight improvements, but far from normal. 2 weeks later he switched me to Prednisone. Again, slight improvements but the side effects are hell. I can't sleep and the bloating and gas pains have returned. To make matters worse, SCD had helped me drop from a chubby 205 to a healthy 165 and now that I am flaring, I am down to 147 and cant do anything to stop it. I have resorted to spooning coconut oil and avocado to try to keep weight on.
My GI is now pushing for Remicade. I am obviously disheartened because I just fought a war for 8 months to avoid just that. My last alternative has been turning to some integrative doctors who are looking more at the root cause rather than treating my symptoms. I spoke with a Dr. for over an hour today who flat out told me "SCD/PALEO/GAPS do not work." She claims that these diets allow way too many carbs in the form of fruits and honey that essentially just break down into sugar. Why it worked for me for so long and then suddenly failed, I have no idea. She is working up a new diet for me that will further restrict things, taking out fruits and high sugar veggies such as beets and carrots. This was already a trying 8 months so I am pretty bummed about restricting my diet further. We also discussed the possibility of fecal transplant and some other stuff as well. All in all, I don't know what to think. I am trying to get an appointment with an integrative Dr. in NY almost 4 hours away who has had great success treating patients with digestive enzymes, fatty acids and a bunch of stuff I don't understand.
I am hoping for one more shot at remission before caving in to the Remicade and risking lymphoma and all the other terrible side effects. I'll try to come back and update this thread to let people know what I learned after I meet with this doc. But yea, just my story so far...
- Location
- Calgary, AB, Canada
Twan,
Wow. Thanks for sharing this. Certainly disheartening. Hopefully it's not that the Paleo/GAPS/SCD don't work, I've heard WAY too many comments that speaks to the contrary online.... but they might just not work for some people (namely, us). I've been on STRICT SCD for the last 5 days and no changes. Still getting gas & bloating, still getting D. Mind you, I've had 4 resections and my gall bladder out and a colonoscopy a couple of weeks ago that shows that my crohns is back. I might just get D for the rest of my life. Who knows.
Im grasping at straws, but defintiely not giving up yet. I'm on Cod oil, L-Glutamine, LDN, SCD/Paleo, digestive enzymes, probiotics, a candida cleanse and I just did a stool test for my Naturopath. I'm really really trying to be the guinea pig for this stuff, but if things don't pick up soon, I might have to go the humira route. I'll keep you posted and I think I speak for everyone when I say we appreciate you posting, and look forward to hearing more about your progress. I'm hopeful that if we all share these kinds of experiences, we'll be that much closer to finding something that works!
-Adam
Wow. Thanks for sharing this. Certainly disheartening. Hopefully it's not that the Paleo/GAPS/SCD don't work, I've heard WAY too many comments that speaks to the contrary online.... but they might just not work for some people (namely, us). I've been on STRICT SCD for the last 5 days and no changes. Still getting gas & bloating, still getting D. Mind you, I've had 4 resections and my gall bladder out and a colonoscopy a couple of weeks ago that shows that my crohns is back. I might just get D for the rest of my life. Who knows.
Im grasping at straws, but defintiely not giving up yet. I'm on Cod oil, L-Glutamine, LDN, SCD/Paleo, digestive enzymes, probiotics, a candida cleanse and I just did a stool test for my Naturopath. I'm really really trying to be the guinea pig for this stuff, but if things don't pick up soon, I might have to go the humira route. I'll keep you posted and I think I speak for everyone when I say we appreciate you posting, and look forward to hearing more about your progress. I'm hopeful that if we all share these kinds of experiences, we'll be that much closer to finding something that works!
-Adam
Years ago a co-worker swore to me a number of times that acupuncture was the best cure for aches and pains. I should go. So, I thought what the heck, I'll give it a try, go where she does and see if helps a little. Figured it couldn't hurt.
Rather odd place to say the least. I would have run out after the chanting music was turned on and the guy began making strange statements. My only problem is he first placed many needles into the bottom of my feet! I didn't feel the needles when they went in, but certainly could see them and figured I'd feel it if I got up and tried to leave quickly! :lol:
Good luck with the new diet your doctor is working up. Hope it helps.
Another diet idea you could take a look at is Dr. Hunters. He's been published a few times about using diet ideas, liquid and then elimination diets, to obtain remission in Crohn's patients. Ran across a Daily Mail article about his work, with a claim of around 90% success rate in patients.
His sight:
http://crohns.org.uk/
&
"How to tackle Crohn's Disease without the help of drugs"
http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html
Rather odd place to say the least. I would have run out after the chanting music was turned on and the guy began making strange statements. My only problem is he first placed many needles into the bottom of my feet! I didn't feel the needles when they went in, but certainly could see them and figured I'd feel it if I got up and tried to leave quickly! :lol:
Good luck with the new diet your doctor is working up. Hope it helps.
Another diet idea you could take a look at is Dr. Hunters. He's been published a few times about using diet ideas, liquid and then elimination diets, to obtain remission in Crohn's patients. Ran across a Daily Mail article about his work, with a claim of around 90% success rate in patients.
His sight:
http://crohns.org.uk/
&
"How to tackle Crohn's Disease without the help of drugs"
http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html
Adam, I agree and I found it infuriating that she would just say that they "don't work" especially when it clearly did work for the better part of a year. She should have been a bit more sensitive and positioned it as "it might not work long term if you allow too many carbs and sugars as part of the diet." This is certainly not an opinion I haven't heard before, as I have read some experiences of people simply ingesting too much of one thing and having a setback. When the diet was working, I was having a fruit smoothie almost every night because they are delicious. It retrospect, that was probably just way too much sugar even though it was all coming from fruit. The problem with the diet for me is once you cut those things out, what is left? The past few days I have been experimenting with simply cutting down on those high carbs fruits and veggies. I did some research online about high carb fruits and found raisins to have an absurd amount of carbs. I wish I had known because I was also having a box of raisins with lunch every day and snacking on them at night. I am hoping that if I can stick to the diet while removing fruit, and high sugar veggies like beets and carrots, I might see some results. That would at least give me some hope that I can turn this around without the drugs.
Losing honey is going to be tough for me though, we use honey in so many SCD recipes to make nice little sweets and things of that nature that really make the diet tolerable. I guess I'll just wait to see what kind of diet she has drawn up for me.
For the rest of us, I think it's important that we don't focus on the possibility that the diet doesn't work, but think about it as, maybe we need a diet tailored specifically for US. We all know Crohn's comes in many shapes and colors and while some of us might tolerate unlimited fruits or red meat, some may not. We just have to figure out what works for US. Thanks again for sharing, your experiences inspire me to not give up this fight and to keep looking for answers. Maybe sharing information will get us closer to that "normal" life we are all striving for
Losing honey is going to be tough for me though, we use honey in so many SCD recipes to make nice little sweets and things of that nature that really make the diet tolerable. I guess I'll just wait to see what kind of diet she has drawn up for me.
For the rest of us, I think it's important that we don't focus on the possibility that the diet doesn't work, but think about it as, maybe we need a diet tailored specifically for US. We all know Crohn's comes in many shapes and colors and while some of us might tolerate unlimited fruits or red meat, some may not. We just have to figure out what works for US. Thanks again for sharing, your experiences inspire me to not give up this fight and to keep looking for answers. Maybe sharing information will get us closer to that "normal" life we are all striving for
Welcome TwanXP - Thank you for sharing your story & please continue to post updates. My 20 year old daughter took Remicade for just under three years but has been med-free since October 2012, just trying to control her symptoms with diet & supplements. It been rough, and her GI is pushing Humira, but she refuses to take any more meds and she has my full support. It's odd because just today she received a fedex package in the mail telling her, "Congratulations! You have been approved to receive a year of Remicade FREE for one whole year!" Ah, no thanks. We are not going down that road again. You can keep your meds, even if they are "free."
Take care.
Lisa
Take care.
Lisa
Hi, My Mom has been suffering with this desease for many years. i AM determined not to loose her to this. I will watch your post and I am also going to find the Paleo diet and get her started. Thanks
- Location
- USA
They have great success with fecal transplants. I would do that if I were you. Some are instantly better! Go for it!
- Location
- USA
Even back in Bible days their main staple was bread. But, it was unleavened bread, no yeast!! Yeast is the problem in carbs! Rice never hurt anyone and it is a carb. This is obvious to me. Too many fruits can be bad, but if you juice and take out the fiber part, it is good for you. Just not too much.Veggies too.
- Location
- USA
I am leary of acupuncture due to it's origin of ancient gods and spirits. I won't do it because of that!
Very informative and will be on top of this...
- Location
- Calgary, AB, Canada
I'm not sure if I agree with what you've posted 723... The SCD diet and Paleo diet both take out any bread, unleavened or not. Although Paleo allows for *some* rice, it's more of a once a month treat... not to be taken all the time.
I was actually in the same boat as you with acupuncture, but I watched a full blown documentary on www.documentaryheaven.com about acupuncture, and they actually found that it does physically do things to you! They measured brain activity and noticed a visible change between people who got acupuncture and those who didn't. It was actually really interesting to watch. They showed a Chinese woman going through open heart surgery, while AWAKE. Her only pain relief was acupuncture. Pretty intense stuff.
Small update on myself: I decided to stick to the SCD diet for 4 day (the "intro" diet, where I had nothing but soup and homemade beef patties and homemade gelatin for 4 days. Also, after reading this article published 2 months ago about Marijuana and Corhns, I also started taking some of that.
http://digitaljournal.com/article/350495
The results? I'm about a week in, and yesterday I only had 1 bowel movement, and it was mostly solid!!!!! That's a first in a very long time. Today I only had 1 bowel movement too, but it was more liquidy. But still... I might be seeing improvement!!
-Adam
I was actually in the same boat as you with acupuncture, but I watched a full blown documentary on www.documentaryheaven.com about acupuncture, and they actually found that it does physically do things to you! They measured brain activity and noticed a visible change between people who got acupuncture and those who didn't. It was actually really interesting to watch. They showed a Chinese woman going through open heart surgery, while AWAKE. Her only pain relief was acupuncture. Pretty intense stuff.
Small update on myself: I decided to stick to the SCD diet for 4 day (the "intro" diet, where I had nothing but soup and homemade beef patties and homemade gelatin for 4 days. Also, after reading this article published 2 months ago about Marijuana and Corhns, I also started taking some of that.
http://digitaljournal.com/article/350495
The results? I'm about a week in, and yesterday I only had 1 bowel movement, and it was mostly solid!!!!! That's a first in a very long time. Today I only had 1 bowel movement too, but it was more liquidy. But still... I might be seeing improvement!!
-Adam
I'm sorry but for one Crohn's isn't just a battle with "diarrhea." You've had four resections and your major concern is diarrhea? Not colon cancer (assuming you still have your colon), short bowel syndrome, malnutrition, more surgery or death even?
I'm glad that you may entertain the idea of trying Humira in the future but I'm really curious as to how much bowel you're willing to risk loosing not to mention endangering your own life before trying a medication that may help get you into remission. Yes all medications come with side effects yet that doesn't mean you'll get all of them or any for that matter. Often times leaving the disease untreated will cause much more harm than the possible side effects from medication.
I wish you good health in the future and hope that you continue testing to keep track of how you're doing inside.
- Location
- Calgary, AB, Canada
Hey Jennifer,
My 4 resections have occurred despite being on every medication available, besides Humira. The last year of my life I have come to the realization that I'm not getting better, despite the medications. I've listened to my doctors for 14 years and have still had 4 resections. That's why I started looking closer at the role of diet. A quick search of the Specific Carbohydrate diet online will come up with hundreds of testimonials from Crohn's patients who have had incredible success with it. I'm not saying medication isn't the appropriate way to go for some people, but it's likely not the appropriate way to go for me, and I wanted to offer up an alternative solution to others who find themselves in my same boat.
Of course I worry about colon cancer, malnutrition and death. I never meant to give the impression that my primary concern is diarrhea. My primary concern is getting my body back in check, whether it's through meds or diet. But looking back at my experience, meds haven't worked great for me.
To answer your direct question, my answer is 0 or 1. If I can't control my symptoms through diet alone, or if I have to get another resection because the disease is prevalent despite sticking to a dietary regime, then I will certainly try Humira. But no, I can't justify putting another chemical into my body, when may of the other meds have ravaged it. 6MP paralyzed me from the waist down. Prednisone took all the calcium away from my bones, and I now have osteoperosis at age 32. I wasn't made aware of either of those risks before my doctors put me on these meds. I sometimes just think that doctors are too quick to prescribe the medications that can affect peoples lives negatively, even if they do help with the Crohn's. I think everyone needs to be aware of that.
-Adam
My 4 resections have occurred despite being on every medication available, besides Humira. The last year of my life I have come to the realization that I'm not getting better, despite the medications. I've listened to my doctors for 14 years and have still had 4 resections. That's why I started looking closer at the role of diet. A quick search of the Specific Carbohydrate diet online will come up with hundreds of testimonials from Crohn's patients who have had incredible success with it. I'm not saying medication isn't the appropriate way to go for some people, but it's likely not the appropriate way to go for me, and I wanted to offer up an alternative solution to others who find themselves in my same boat.
Of course I worry about colon cancer, malnutrition and death. I never meant to give the impression that my primary concern is diarrhea. My primary concern is getting my body back in check, whether it's through meds or diet. But looking back at my experience, meds haven't worked great for me.
To answer your direct question, my answer is 0 or 1. If I can't control my symptoms through diet alone, or if I have to get another resection because the disease is prevalent despite sticking to a dietary regime, then I will certainly try Humira. But no, I can't justify putting another chemical into my body, when may of the other meds have ravaged it. 6MP paralyzed me from the waist down. Prednisone took all the calcium away from my bones, and I now have osteoperosis at age 32. I wasn't made aware of either of those risks before my doctors put me on these meds. I sometimes just think that doctors are too quick to prescribe the medications that can affect peoples lives negatively, even if they do help with the Crohn's. I think everyone needs to be aware of that.
-Adam
Definitely. Knowledge is power. The more we know about the medications that doctors offer the better decision we can make for ourselves. Whether or not to try it, whether or not we should try a lower dose, to try and suggest an alternative be it another medication, diet change etc, and be able to monitor our own health better by knowing which meds require monitoring through blood work or which meds shouldn't be taken long term (such as steroids). Yet knowing this we can't simply blame the doctors. Although, all this information wasn't so easy to find in the past or wasn't even known until more recently. Yet we're able to advocate for ourselves a lot better now than we were in the past.
I'm having a little trouble following your story. When did you have your 4th resection? You went from 3 resections to 4 in this thread. You said your last one was in May 2012. Is it 3 or 4?
From your first post:
"I've done this because I've been laid up in hospital for the last 3 weeks, having undergone my third and hopefully final resection of bowel."
Recent post:
"I've had 4 resections..." http://www.crohnsforum.com/showpost.php?p=679719&postcount=287
You also said that you've dealt with Crohn's for 12 years:
"I'm speaking from experience here too. 12 years of crohns." http://www.crohnsforum.com/showpost.php?p=651853&postcount=257
Then:
"I've listened to my doctors for 14 years and have still had 4 resections." http://www.crohnsforum.com/showpost.php?p=681828&postcount=299
Is it 12 or 14 years?
It sounds like you did extremely well with Remicade. Do you think that if you had stuck with it then you might have avoided another resection? It can take three months or longer for some people for Remicade to fully kick in yet others notice immediate benefits as you did.
"I had a terrible flare about 8 years ago, took 1 dose of Remicade, and I was fine for a year. No, it didn't solve the problem of the disease being present, but it certainly masked the symptoms enough that I was able to function again." http://www.crohnsforum.com/showpost.php?p=463067&postcount=42
The only meds I've seen you mention in this thread that you've actually taken are Remicade (which you did well on), LDN (you didn't notice any change so stopped it), 6MP (only mentioned just recently that it caused some major damage) and Prednisone (again mentioned recently and also caused damage). There have been many times where you mentioned trying every med out there but you've only mentioned four (that you've actually tried). Have you actually been on any other meds or did I miss that in one of your posts?