Scared, Need a Helpful Diet

[alexisreese]

I just got prescribed Remicade infusions along with 6mp. I'm way to scared of the side effects of these drugs. I need some info on how to control my Crohns with a strict diet. I wanna try any OTC pills and diets before I resort to these meds. Please post some diets or tricks that help keep your Crohns under control. :sign0085:

 

[kiny]

You should ask to not go on the 6mp together with the remi, that will greatly reduce the chance of side effects. A diet isn't going to put you in remission, and if they suggested to go on remi you probably aren't in remission so...dunno what to say. Thinking a diet is going to keep you in remission...good luck with that, isn't going to happen.

 

[alexisreese]

Okay well I realize a diet is not ideal and not likely to put me in remission completly... I'm trying alll my options before I put poison through my veins. I'm onlt 20 and id like some quality of life in case anything bad comes out of remicade.

 

[Jennifer]

Hi alexisreese! Sorry to hear about the flare and that you may need more aggressive medication. Personally I've never thought of medication as "poison" but rather something that keeps me alive and improves my quality of life. I've been taking 6MP since I was about 14 or so and am now 30. Never had any side effects from it. I've never taken Remicade but I know its only used in more extreme cases. I believe GI docs usually go the biologics route before attempting surgery (just depends on how bad things are really).

May I ask what your symptoms are? If things are fairly out of control then diet change may not be enough but its obviously your choice.

For me the only time I ever went on any type of diet was during a flare and I usually followed the BRAT diet while taking medication. That stands for bananas, rice, apple sauce and toast. It's not strictly just those four items though. Was it means is a low residue diet meaning mild, not spicy, not fried, low fat, low sodium etc. Other people on the forum like to try juicing and other stay away from both starches, carbs and processed foods. None of these diets are bad really. In fact they're good for anyone with or without IBD but there is a lower rate of getting people into remission and staying in remission using just a diet vs going on medication. Doing both at the same time may be more beneficial.

If you're going to try just the diet route I encourage you to continue seeing your GI and have regular testing done done make sure that you're improving and if not, maybe then you'll be willing to accept medication to help you get into remission. Be safe about it. There have been some people on the forum who almost died because they went so long without meds (me included) where in their situation, they needed it and most had to have surgery to take out the damaged portion or had to have a stoma. Be careful and keep us posted.

 

[hugh]

Diet is the first thing to do, and the most important.
Obviously only you know where your health is at the moment, so be sensible,
You may have to get it under control before you can approach a diet, keep your GI in the loop but ignore his disbelief and disapproval, There's a ton of evidence supporting dietary measures

Many people are doing very well -not cured - but symptom free so don't give up.

sorry this reply is a cut and paste reply, i get tired of saying the same thing over and over,
I really wish the killjoys would get tired of it too (it won't work, it won't work, it won't work. Give it up mate, let those who are open to reality work on it)
search the forum for paleo or it's variations (SCD, GAPS,)

from http://crohnsdad.com/2011/09/20/corestrategy/

" Stop eating the foods that cause leaky-gut
Stop eating the foods that feed pathogenic bacteria
Supplement to kill pathogenic bacteria and replenish good bacteria
Supplement to reduce inflammation and heal leaky-gut

Diet – The most important component – 75% – is diet. Eliminate all processed sugar, grains, legumes, and dairy. Although grains are the enemy, it’s also important to reduce high omega 6 fats and fructose. So what do you eat? Meats (hopefully grass-fed/pastured animals and wild caught seafood), Vegetables, Fruits and Nuts (and Tubers after some healing). Great diets for this include: SCD or Specific Carbohydrate Diet, GAPS or Gut and Psychology Syndrome Diet, and Paleo. Both SCD and GAPS are specifically designed for autoimmune disease and offer an intro phase and process for healing. Paleo doesn’t offer a process, but I’m partial to their evlolutionary biology approach to the world. Here is a PDF (http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf) that outlines a solid approach. It combines the best of SCD/GAP with its low FODMAP strategy, all within a Paleo foundation. "

"and 100% of the patients had their symptoms reduced"
http://crohnsdad.com/2012/01/13/ibd-pilot-study-using-diet-based-on-scd-shows-100-success-rate/

 

[alexisreese]

As of right now I'm have no crazy symptoms. I've already tried cimzia, which was an epic fail and lead to my first bowel resection a year after being diagnossed. The ball is rolling with remicade right now and while it takes a while to get approved by my insurance id like to try a diet and see if it can just keep me feeling okay without medicine. I just had a really eye opening experience yesterday when I sat down and thought about my life at 30, will I ever find someone to marry me if I have cancer caused by remicadee. Will I ever be able to have children if I get one of the nasty side effects from these medications. Like I said I'm on 20 and id like the chance to be 25 and 30 years old without a bunch of illness under crohns disease. And there, I just spilled out my heart on tbhis fourm. Tada.

 

[kiny]

I really wish the killjoys would get tired of it too (it won't work, it won't work, it won't work. Give it up mate, let those who are open to reality work on it)
search the forum for paleo or it's variations (SCD, GAPS,)


it’s also important to reduce high omega 6 fats and fructose

It's not that at all.

You recommend avoiding fructose and you recommend the SCD diet.

Do you know what the SCD diet recommends? Fruit and Honey, you know which foods are highest in fructose? Fruit and Honey.

While I appreciate people who recommend diets, I also realise that a lot of it is making no sense whatsoever, and I also know that many people who rely on diets end up in the hospital. Both sides have risks, while medications have risks for some, so does relying on a diet.

So if people think that a diet is going to put them in remission, be my guest, relying on snippets of info that are often wrong, contradictory and have never been proven.

Sorry if I sidetracked, I just hope if you pick a diet, you realise you're taking a huge leap of faith.

 

[maggied]

Hi Alexis!
I know just how you feel. I have always been really nervous about some of these drugs, especially being a young woman and wanting to have children. I found a great general practioner when i was first diagnosed about 8 years ago who suggested i look into the Specific Carbohydrate Diet (SCD). I got the book that lays it out, Breaking the Vicious Cycle, and decided to give it a try. I still eat this way 8 years later. When i started I had fistulas and recurrent abcesses from my ileum. I did have to go on 6mp for about two years and between that and the SCD diet, my fistulas healed and I went into remission. I got pregnant (with twins!) about five years ago and went off the 6mp at that time. I just stayed on the SCD and didn't have another flare until about a year and a half ago (when I also started to cheat on the diet pretty consistently). Since then I've had to go back on some medications. i'm back on pentasa and i've had to take antibiotics once or twice for abcesses. I would say, don't reject medicine. Sometimes you need it. But don't reject these diets either. I still have some issues while i'm on the SCD, but i've had some really serious problems in the past and I've managed to avoid surgery completely (you should see the looks on the drs. faces at the ER when I tell them this!), I eat well, and I almost never have bathroom trouble. I have a normal bowel movement once a day, pretty much every day. Just for that its worth it to try a diet, even if you have to do it in combination with medicine. I don't know about the paleo diet, but it seems pretty similar to the SCD. I know how terrifying it can be to think about your life and your future (especially health-dependent things like having a kid). Just wanted to encourage you to give it a try. It won't do any harm and it may help. Bodies really do want to heal and they can. Finding the right path for that can be daunting and frustrating, but I wanted to let you know that it can be done and, at least in my case, diet has been a major part of that healing. good luck!

 

[shmo]

Hey Alexis,

I'm basically in the same boat. On 6mp now, waiting to be approved for Remicade though obviously I'd rather not take it if I can help it.

Things have been better for me lately *knock on wood* and I'm not starting to wonder whether remicade will still be necessary.

I haven't changed a whole lot to be honest. First off, I haven't really cut anything out 100%, I love some foods too much. But one thing I've really tried to do is eliminate highly processed foods. Nothing with too high a salt content. I've also started using a lot of products made from coconut, like coconut oil, flour, milk. I also take probiotics daily (when I remember them) and have minimized my gluten intake

It's nothing major but since I had my flare up and started doing these things, I've gained almost a pound a week and am starting to feel like a normal human again.

I'm not one to push what I do on other people, but just letting you know what has worked for me in the past couple months. Generally, the healthier/less processed, the better.

 

[Snoflayk505]

Diet put me completely in remission and now medication free. I started it 2 months ago. Its called the SCD diet. I was in full blown flare and unable to eat. After 4 days I could eat soup and after 8 I was eating real food again. Check out my links in my signature I would be happy to help if you want more info.

I suffered from Crohn's/Colitis for 11 years and was practically living in the hospitals and on prednisone the entire decade. My Doctor is very impressed that this diet has done what it has because we had a long hard fight.

 

[Snoflayk505]

And yes you will find someone I have an Illeostomy and I am now 30 married with 2 kids, I had the most unmanageable IBD my Doctor came across. I also did a clinical trial and got pregnant and went the entire pregnancy on Humira. She was just fine

 

[hugh]

“You recommend avoiding fructose and you recommend the SCD diet.” -kiny

I recommend the paleo diet, I think SCD is an imperfect second best, but an easier introduction for people who don't want to go the whole hog.
When SCD wasn't working for me I looked around and found Paleo which does work for me

“Do you know what the SCD diet recommends? Fruit and Honey, you know which foods are highest in fructose? Fruit and Honey.” -kiny

By avoiding refined sugar and only eating raw honey and fruit most people will be severely reducing their sugar intake.
SCD recommends avoiding high sugar fruits and limiting honey intake although I will admit this part of the message gets lost as most of the recipes seem to just replace sugar with an equal amount of a different sweetener.

SCDLifestyle.com recommend the following if the SCD isn't working for you
-avoid dairy, nuts ,eggs and fruit/honey.

“While I appreciate people who recommend diets, I also realise that a lot of it is making no sense whatsoever, and I also know that many people who rely on diets end up in the hospital. Both sides have risks, while medications have risks for some, so does relying on a diet.” -kiny

Having spent a couple of years looking at the effects of diets on health in general and immune-related diseases in particular I am confidant that diet plays a huge role and most people will see an improvement within a short period of time.
I do not recommend ignoring the messages from your body or those from your doctor, but I do recommend a healthy dose of scepticism for their narrow dogmatic and unscientific mantra -”Eat what you feel like, it doesn't make any difference” .
There is no risk from a properly managed and balanced paleo diet, there are issues with the introduction, the issues related to die off (the first week/10 days) and extra issues for IBD sufferers due to the limited ability to tolerate some foods.
I do not recommend going it alone- there are many sources of information but much research needs to be done as many of them are incorrect/misguided.
My own recommendations are.....
( to understand leaky gut and it's role)
http://crohnsdad.com/2012/06/05/framework-matters-study-links-for-safe-effective-crohns-strategies/
http://paleodietlifestyle.com/dealing-with-autoimmune-diseases-and-digestive-problems/
http://paleozonenutrition.com/2011/11/02/the-paleo-diet-variation-to-treat-auto-immune-disease/
and
a food list very restricted to begin with
http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf
Also check out the GAPS or SDC introduction protocol (try google)

“So if people think that a diet is going to put them in remission, be my guest, relying on snippets of info that are often wrong, contradictory and have never been proven.” -kiny

Diet has put many in remission, and enabled many more to stay in remission brought about by other means. This link is to a small study with 100% of participants having improvement (not cure but improvement)
http://escholarship.umassmed.edu/cgi/viewcontent.cgi?article=1025&context=cts_retreat

"Sorry if I sidetracked, I just hope if you pick a diet, you realise you're taking a huge leap of faith." -kiny

To quote Rob Wolf
“These are exciting times for those who struggle with AI, as current research attempts to explain what thousands of people have found to be anecdotally true. As Chris Kresser, L.Ac discussed in a recent podcast http://bit.ly/JhUrFg the issue of intestinal permeability or ‘leaky gut’ has been made fun of for years as pseudoscience. Not to worry, the research surrounding this issue is about to explode due to the fact that the first drug to treat intestinal permeability is being developed. Once “Big Pharma” gets involved, and there is suddenly money to be made from treating this issue, the research to justify it won’t be far behind!”

 

[ravensfan88]

I'd like to add that Remicade has been a life saver for me.

I lost over 40lbs and hovered around the 100lb mark from this disease. It wouldn't allow me to absorb any nutrients from food, even though I was on a VERY bland diet.

I only ate rice, fish and bread every day. It didn't matter. It didn't help my symptoms and though it didn't make me feel any worse, it didn't make me feel any better.

I had to get TPN (nutrition through a catheter placed in my vein) to give my body what it needs to survive. That, along with the Remicade has now given me hope. I almost died and now I can live again.

I really suggest you think it over more and if your GI thinks Remicade is right for you, it probably is. Start with a diet now, and really consider taking the treatment. It will make a drastic change in your life.

Good luck!

 

[Jennifer]

As of right now I'm have no crazy symptoms.

I'm sorry I still don't understand what symptoms you're having.

I can understand why your GI would want you on more aggressive medication since you recently had surgery and are already flaring. Best thing to do now would be to avoid another surgery. However you do that is up to you but its important.

True I haven't taken Remicade but ever since I joined this forum I haven't heard anyone getting cancer from it or any truly severe side effects. You may not even need it for long term.

For me I'm still on the 6MP, will be getting married this year and do plan on having children not long after. Remember that this disease and even the medication don't stop life from happening.

 

[Jennifer]

Work with a dietitian to make sure you are getting enough vitamins and nutrients, and ask if you should take any supplements.

This you can do with your GP or GI by having blood work done to check and see if you are low on any vitamins and then they can help with what supplements you need, do blood work again to see if the supplements are helping and in some cases where certain ones aren't you can get shots (like for B12) or infusions (for iron etc.). As far as I'm aware a nutritionist does not order blood work. In other areas they may or may not be of any help. I haven't met one so far that was worth a dime.

 

[hugh]

even though I was on a VERY bland diet.

I only ate rice, fish and bread every day. It didn't matter. It didn't help my symptoms and though it didn't make me feel any worse, it didn't make me feel any better.

Bland doesn't do it, try paleo or SCD bland and see how you go
I hope you will try diet again, and leave out the bread,
seriously, it's one of the worst thing to eat
http://www.glutenfreesociety.org/gl...g/gluten-and-the-autoimmune-disease-spectrum/