My tips /advice after being in remission for 10y

[RoyW]

Hi all fellow Crohnies,
I wanted to share with you my story of crohns and hopefully help at least one of you out there. Let me start off by saying that all my suggestions and thoughts are just that and should not be a substitute to the advice of a real medical professional

I'm a 34y old male diagnosed with crohns 18 years ago when I was 16 years old. I started off with 5-asa meds for some time and immediately started looking for diets to try in order to get rid of it. I quickly found out about the SC diet and followed it extremely strict, could get off of the meds within 3 months and thought I was cured after doing it for a year. Sadly, soon after I started introducing more foods again and going through the well known first breakup of my life, my crohns came back in a flash. I then got so sick that I couldn't get it back under control with the SC diet myself and the doctor prescribed me Prednisone for a short while. This helped me gain back control (that is, no blood in my stool and cramps disappeared) that I stopped all meds again and continued on the SC diet. I did this diet on and off for years, trying to introduce foods when I felt fine for a long period of time and really learned how to handle a 'flare up' when I felt it coming.

Here is my biggest advice for any of you going through a flare up :

Eat ONLY chicken bone broth.

Throw some chicken legs, a carcass or even a whole chicken in a pressure cooker. Add an onion and make yourself the broth. Throw away the onion after (don't eat), add some salt and pepper for taste, and only eat the broth. (no chicken meat, no onion, just the broth) this gives your intestines the rest it needs while still absorbing vital nutrients from the broth. Because as with any inflammation, it needs to calm down in order to heal. Eat as much broth as you like and do not add anything until there is no blood anymore within your stool. Once that is the case(hopefully within a week because you will lose weight a lot and if not, really go to your doctor) you then start eating the chicken meat. In fact you can eat any really well cooked meat (meat is probably the best thing us Crohnies can digest) and you might even add some broccoli to your new soups. (broccoli the best veggie for us crohnies).
From there on out, as long as you do not feel pain and or see blood, you slowly add more veggies to your soups. (I usually put broccoli, carrot, Cauliflower, celery) You can then eat plenty of meat and start making the soups tasty again. Stick with soups though until you really feel better. Soups mean the food has been well-cooked and makes it a lot easier for your intestines to digest and absorb. (It would even be better if you blend the soups before eating them).

Yes, it's not fun to eat the same soups all the time, but it's a lot better than being sick.
Once you are feeling good and your energy levels go up a lot, you then can introduce non-soup food.

If you doing this regime very strict every time you feel a flare up, you should be able to never get too much inflammation, although make sure your mental health is in tact.

There are a few things that I would recommend when it comes to food. And while every Crohnie responds differently, I do believe most will benefit from the following;
- Don't eat raw vegetables.
- Dont eat dairy (perhaps very old cheeses, but I'd recommend to completely avoid)
- Go low on carbs. Especially if you are tired often or have difficulty gaining weight. Try removing carbs from your diet. Even fruits.

I believe that if you want to be completely symptom free, the carnivore diet will be the best. (truth been told I have never done this, because I do not believe it is maintainable in the long run) I have done the Paleo diet for a very long time, but struggled with energy levels
until I took out the fruits. Currently, I'm on a low carb diet (keto) eating lots of meat, fish, nuts, vegetables with the only fruits being occasional berries. This works wonders for me.

I have not taken any medication nor have I been in a flare up for the last 10 years. I really hope you will have the same. And while I know everyone is different and maybe for you my diet is not working at all, I do hope it helps someone to belief its possible as long as you are strict and consistent.

That ends me with the last rule for staying in good health.

- Do not cheat. Really, just don't. It's never worth it

 

[westernbuddy]

Yes I was only thinking the other day.

Out of all the people in the world with crohns, how many people control it with food or diet and how many with medication.

Food is key, you also need some supplements to take along side it, folic acid, omega 3, vitamin d. e.t.c

Food has slight differences from person to person, some can touch meat some cant, some can touch fruit and veg some cant.

I think if someone has strictures fibre matters, soluble or insoluble fibre.

Often there is a work around if you can't eat dairy, take soy, almond or coconut milk, banana or avocado is best fruit for strictures, blend a banana with almond milk for a soothing shake.

Sometimes a patient can't control symptoms with medication, and sadly sometimes with food, and then surgey is required.


But I think food and diet is key, maybe tests to test inflammation levels after food or a new food, and tests to make sure nutrition and vitamin levels are maintained from the custom diet, then maybe we would need no medication no side effects.

Also training on how to cook these foods for example, maybe one patient gets 0 inflammation from fish let's say cod, but if you fry that cod it causes inflammation, if you oven bake It does not, then how much are you absorbing as it's a solid food, how much vitamins and minerals am I getting from it.

 

[RoyW]

The problem with most Crohn patients is that they try food and believe because they feel worse the next day that the food is just not good for them.
Sadly, oftentimes you aren't even aware of having trouble in your guts for weeks/months until you eat something that affects the area where the mild inflammation exists, and then they blame the food they ate before it happened.
That is how they start eliminating more and more foods, which makes them convinced that certain foods aren't just good for them.
Others just can't stick to a strict diet and prefer staying on meds or accepting to have more than one bowel movement a day.

I read some posts on this forum about people avoiding meat and eat whole food diets with plenty of vegetables and grains.
For me, it is just crazy to see people can abide by such a diet without any symptoms or medication for a long time.
A diet full of legumes, flour, grains, almost sounds like they must have another disease, haha.
Those are really really hard on the gut. Foods high in fiber cause me issues (without being aware) sooner or later (can be 1-3months or longer, depending on the intake).
When I started noticing it and went only on bone broth, the cramps and bad stool got a lot worse for a few days, until everything calmed down and started recovering.

I would love to see some research done on 100+ Crohn patients that do not use any medications, where half would do such whole foods plant-only diet and the other group carnivore, and then see the results of their inflammation markers every month. Very interesting!

 

[westernbuddy]

Haha yes I very much agree, a lot of the whole world is going vegan now and not just the crohns forum.

And i sit there thinking could I do that, in reality i have no chance as per your comment A diet full of legumes, flour, grains is hard to digest, some fruits are highly acidic.

I can't eat all fruits and veg i can't eat all meats, so why limit myself to one side or the other, both come with various benefits and nutrition.

Chicken I feel causes me 0 inflammation, bannanas 0 inflammation, this expands my safe foods.


I think there is a lot of research still could be done on diet, it could even be done here with us the patients, some simple software is all it would take to create our own study.

 

[asadmom]

Hi Roy, so, so, great to hear your journey and the wonderful outcome.

Could you please share how and when you decided to go off the med and how you tracked your progress (blood and stool tests, MRE...) How did the conversation with your GI doc go when you expressed the desire to go w/o med and how they supported you through this journey?

We hear a lot of diet but not a lot of the hurdle. Would love to hear how you executed the grand plan. Thank you.

 

[RoyW]

My GI doc and I had a terrible relationship. I don't think any doc would support you in taking off meds. Even today, where at least most doctors are aware that diet actually helps, they still are following procedures of what they have learned from the books.

I was a very stubborn kid back then (16y) and when I was diagnosed, my GI doc told me with a big smile on his face that I would be on meds forever. I was put on pentasa (mesalazine). I disliked him from day 1.
I immediately started doing my own research by reading everything I could about it online. Quickly found out about the SC diet (there was a nice forum back then where people shared their information, but it's gone now I see). Started following it extremely strict right away and felt really good after a while, dropping the meds myself after 2-3 months (tampered them off from 6 to 4 to 2 to 0 a day) Pentasa is just a first line of defence. Not doing too much to your body. I remember seeing my GI-doc around that time and telling him about the diet and that I felt so much better. He laughed again and told me I should eat everything and that diets wouldnt make any difference. He told me to keep taking Pentasa (I said sure), went back home, not took any meds, changed my GI doc, and followed the SC diet strictly for a year staying in remission (though often quite fatigued (from the fruits I can say now)).

I saw the other GI doc after a 6 months checkup, just for my blood work. He just said that I should keep doing what I was doing as my numbers looked great. I got a nice stack of Pentasa from him as well that I did not use.

I remember on the SCD forums they said you have to follow the diet for 1y very strictly before you could introduce more foods again. And so I did. Sadly, introducing french fries and the likes didn't go so well. I started getting bloated and heavy stomach after a few months and I decided to start with Pentasa without seeing my doc first ( I don't recommend playing your own doctor though(!)). Don't remember the details of what I exactly did anymore. I managed to get it under control everytime I went back to the broth only, but I kept trying different foods occasionally while doing the SC diet. I remember back then thinking white oven-baked bread was fine for me, as my stool got solid and I didn't have any issues the first days/weeks doing so. Well, I didn't understand much at that time yet. Tried introducing multiple things. When the symptoms started after a while, I used to always think about the last food I ate, and that something I ate the night before must have been bad (lol!).

If I felt bad, I could go to my local doctors' office. (in the Netherlands, we have a first-line (general) doctor living nearby where you can go with any symptoms, before being forwarded to a specialist). This doctor supported me with the diet and I could go to him asking for bloodwork if I felt off. I went a few times when I felt really tired or had severe stomach aches, usually right after I started the soups already. I learned that my blood would turn out fine if I would have symptoms but at the same time would eat bone broth only. I guess CRP/inflammation drops fast doing only bone broth (depending on the severity of the flare). When I was convinced my Crohn was active while my CRP didn't show, I checked my stool, and those times (2 times I did), I always had small traces of blood in it. Just followed the strict soup diet and I always could get it back under control, so I did not need to do a follow up anymore at a GI-doc. I kinda just cancelled one appointment once after 1 year and never saw a GI-doc again until the first severe flare after 4y.

Around 3-4y after my initial diagnosis, I had the worst and last flare I ever had. I was trying a few things with foods (spelt bread I remember well), I went out drinking with my buddies quite often, and I went through my first breakup in life. All that combined really got me hard. It was then that I could not control it with the soups and had to go for stronger meds. I went to my GI doc and did a colonoscopy showing inflammation and got a prednisolone treatment. This worked really well. I think I had to take it for 2 weeks and combining it with the bone broth I got quickly into remission. Immediately after the strong meds, I stopped taking anything again.

After that flare, I decided to be really strict with paleo style diet. My food basically consisted of lots of fruits, cooked/steamed veggies, meat/fish, nuts and seeds. I gained a lot during this time (I would say the nuts did that mostly). I did this diet with an occasional potato whilst eating out, for about 10y. I had periods where I got really fatigued for unexplained reasons, and then just went back to blended soups until I slept 8h and felt great again. Around 4y ago I read about keto and its potential for energy levels. I quickly realized all I had to do is drop the fruits and I was doing a keto style diet. I was already living the nomad lifestyle and I was traveling a lot. In asia I got really tired again. I did not understand why it was like that, until I dropped the fruits. (SEA is known for the delicious high sugar fruits like mango). I went full keto and within a week of no fruits, my energy levels went through the roof. I never had so much energy and so little brain fogs. Thats how I learned that (for me) not doing specific carbohydrate diet, but an almost zero carbohydrate diet works best.

I personally try to avoid meds, especially in the long run. I don't want my body to become dependent on a drug. I think there are a lot of long-term side effects of taking medications. I also think that once you give your body long-term medications, it will be harder each year to get rid of them completely, simply because your body adjust and depends on it. I do however believe medication is very important, but only to get back into remission. Just to help your body with that extra boost it needs to overcome a flare. I personally am a huge fan of sports. I see sports as a great way to keep my mental health in check, but also moving, in general, is extremely beneficial for crohn's patients. Go for that walk after a large meal(!)

Looking back you migh say it was quite risky, but I knew in the back of my mind that I could always take meds if I got into a severe flare.
I think it is really important that people take control of their own health, and understand that every patient is different, really depending on where the inflammation is located.
Nobody knows nor feels what your body wants and needs, except for yourself.
And while medical science got alot better over the last 20y, do know that most doctors you see over age 40 are still using knowledge based upon 20+ years ago. Most doctors don't really read the latest science, thats something you have to take charge of yourself.
They just follow protocols; If inflammation at part p, prescribe x,y,z meds. Do this, then that, okay? Next patient!

I dare say that if I would have followed the doctor's advice and eaten everything that time while taking meds, I would currently have been through some colectomies and whatnot. I am also very aware that most people can't follow strict diets. I dont know why it never was an issue for me.

If anyone wants to try it out; I will attach a file that I made awhile ago. Would be great if I even helped just one fellow crohnie out there one day. And while LCHF might not work for you, I think bone broth works for everyone that wants to get rid of inflammation. Maybe finding your own path that works for you, but only after you are in remission. Rule number 1 when dealing with crohns is always to get rid of your inflammation ASAP when you have one. Only after that you can start to think about implementing certain foods.

Btw, I do a yearly routine checkup that includes CRP as well, and ever since I dropped the carbs, my results come back as non-traceable crp. < 0.1 mg/L (or <1mg/L) not sure what it stated.

 

[Cliffandmorgane]

THANK YOU! This is so encouraging to hear. My husband was diagnosed with Crohn's more than 15 years ago and was told, similarly to you, that he would be on meds his whole life, and that it was incurable. He has been on several different meds throughout the years and on many rounds of steroids, but the last med he was on - mystelera - wasn't working and was creating lots of nasty side effects. The doctors' solution was to increase the dosage! Which we didn't want to do because of all the side effects. By God's providence at that time we heard about medical diets like the SC diet you mentionned. We switched to the keto diet only recently just to clean up our diet before starting the proper one, and my hubby is already in remission and has stopped taking the drugs. So I was doing the same as you, going on the forums and telling people about this! But your testimony speaks a lot louder than ours, cause you have been well for so many years. Keep sharing about it! Do you have a YouTube video about it or something like this? If no you should I think people need to hear about this. My husband trusted the medical system for so long. He even had a part of his intestine removed by surgery. And all this time we didn't know that a specific diet could manage his symptoms, and that he was probably making himself worse by what he was eating - he was told by his docs he could eat anything he wanted.
By the way, the diet we heard about is similar to SC diet, it's called the GAPS diet. Have you heard of it? It links a lot to what you're saying.
Anyway, thank you very much for sharing your testimony, we heard from many other crohnsies who experienced healing following that path, and it just gives us more faith that it can work!!