Discovering what you can/cannot tolerate.

Hey all,

Just joined up and wanted to ask about the best way to find out what you can/cannot tolerate, but before i do i thought i would just tell ya my story of how i was diagnosed with crohn's and how i have got on since.

A couple of weeks before my 18th birthday (Sept 2003) i started to feel sick and having discomfort when i eat anyway thought nothing of it and carried on as normal. After about 2 months it started getting worse and i noticed that i was loosing weight with it, i have always been a fussy eater so when i wasn't eating all my food everyone thought i was just being fussy again. By the time christmas had come i was really ill and had lost about a stone (14lb) i was a slim lad anyway weighing in at around 10st so when i lost that stone it made me look really ill.

By the time the beginning of February came i had lost another stone and was in so much pain (as you know its very painful). Anyway i was going to a&e around twice a week and they kept saying it was either a bug or ulcers and sending me away. On the 26th feb my mam got married and then went on her honeymoon for 2 weeks by the time she returned i was around 7.5st and for a lad thats 5"10 you can imagine how thin i looked so she rushed me to hospital and demanded that i stay in. Anyway after tests they told me i had crohns and that i would need urgent surgery on march 26th 2004.

When i woke up from the op and come out of HD they told me that i had to have 12cm of the big intestine removed and 15cm of the lower intestine removed. They told me that they have given me a epidural for the pain and thats why i couldn't move or feel my legs and that they had now stopped it and everything will be ok.

ONLY EVERYTHING WAS NOT OK! After 2 days the feeling or movement had not returned to my legs and the doctors started to panic and sending me for scans of which they found my spinal fluid was inflamed and sent me to a different hospital Anyway to cut a very long story short after a week they told me that they where very sorry but i would never walk again i was paralysed from my shoulders down. As you can imagine with this revelation the crohn's had taken a back seat and i spent the next few months in rehab coming out of hospital a week before my 19th birthday (Sept 2004). I would like to just say that they never found out exactly what went wrong during the surgery although i am convinced its got to be something to do with the epidural, but because they couldn't fond out what went wrong i didn't win any compensation at all.

Anyway back to the crohn's, after i had that surgery i eat what i wanted and was fine up until about 2 years ago. I was then put on azathioprine which has been good really. But every couple of months i have a bad bought of loose stools and stomach discomfort of which i think it must be something i am eating or drinking.

So the question i wanted to ask was what is your opinion on how its best to find out what is upsetting my stomach?

Thanks in advance.

Logan

Hi Logan,
Sorry to hear of all you have gone through.
I am in the process of trying to find out what upsets my tummy so have decided to keep a food diary. I know it seems too simple an answer but If a write down what I eat then how I feel I can map out what is causing me issues although to be honest it seems like anything at the moments is setting my tummy off.

yes i have been thinking of a food diary also. But if i write down say everything i eat then i have a bad stomach do i look at what i have just eaten the day before or 2 days? Thats where i get stuck.

I have been looking on this site and a lot of people seem to think that the paleo diet has helped them. I am looking into that atm.

I know what you mean about the timescale, do you give it 24 or 48 hours or do you just stick to the same foods for a couple of days.
I am also going to take a look at that diet you mentioned too.
To be honest with you I am in a flare at the moment so maybe I should just try to get this under control & then try something new as it may not give a true representation of how the diet works to do it now.
I am waiting for a resection & hope I don't get admitted sooner than the 4-6 weeks quoted as my tummy is really giving me grief over the last 3 days but we have so much going on at home.

i have tried diets before i tried to do gluten free and found it quite hard if im honest. Im going to see if i can introduce this paleo diet slowly because then i think you will have more of chance at sticking to it. Although I DO LOVE MY CRISPS AND CHOCOLATE LOL.

I know its seems so unfair that these lovely things are not good for you, although many years ago after being in hospital for over 3 months with a crohns flare they couldn't control my mum went completely off chocolate & hasn't eaten it since & that's about 24 years ago.
You see everyone who came to see her brought chocolate to try & fatten her up as she was so thin so she got fed up of it even though it was the only thing she could eat at the time.

Hi all,
I am finding that I tolerate different foods at different times. For me, it all depends on the cycle of the disease. I do feel like I am figuring out what and when to eat certain things. I love popcorn and chocolate, but can no longer tolerate either of them. The only way I figured that out was eating them one time too many times! Not putting myself through that again!

so you eat things one at a time to see if you could tolerate it?

Hey Logan and welcome! Thank you for sharing your story. I'm so sorry to hear about your paralysis though, what a tough break *hugs*

Man, figuring out tolerable foods is such a tough one. A smart guy here named acemagic who is on the paleo diet had a way of categorizing foods that I thought was neat. He mentioned something along the line of:

Crohn's Causing
Crohn's Irritating
Crohn's Safe

Now, I don't think food CAUSES Crohn's Disease but I think that it can lead to a flare. For example, the glycoalkaloids in potatoes are shown to disrupt the protective barrier of the intestines. For someone predisposed to Crohn's Disease, I could see that and other variables leading to a flare over time. You might eat french fries for three weeks straight and not feel the slightest twinge, but they're doing damage.

Conversely, when in a flare, eating popcorn or nuts can be IRRITATING to the already inflamed and ulcerated intestines and you feel that like there's no tomorrow.

And then there's the safe foods.

My point here is that it's not quite so simple as, "This hurt X duration later so it's not safe". In my opinion, there is that factor, but there's also a tremendous amount of research that must go into what kinds of foods are hard on the gastrointestinal system. And that's why I'm a fan of the paleo diet. They've already done a lot of that research.

Again, welcome!

Phone Apps to track your food, symptoms

Kip1 said:

Hi Logan,
Sorry to hear of all you have gone through.
I am in the process of trying to find out what upsets my tummy so have decided to keep a food diary. I know it seems too simple an answer but If a write down what I eat then how I feel I can map out what is causing me issues although to be honest it seems like anything at the moments is setting my tummy off.

Click to expand...

If you have a mobile phone, there are free (as well as cheap) apps that you can use to log your foods you eat, your symptoms (Meals, Pain, Bowel movements etc.). I tried 4 or 5 apps, finally settled on WellApps "GIMonitor" which I think is free, it comes closest of all the ones I tried to "doing it all". You log events every day, then you can search back through your history online or via a PDF log file to see what events caused you to have painful episodes etc. I recommend it. You just need to get in the habit of using it.

As to "how long do you wait?". I find some foods (e.g. Coffee) can cause me diarrhoea within 10-15 mins, some within a half hour or one hour, some within 12 hours, some within 12-20 hours. Generally, if you feel pain or other symptoms, cast a critical eye on ALL the foods you ate in the previous 24 hours.

Note: Some foods could cause problems days or weeks down the track. I am thinking of nuts and the like which can get stuck, and not cause bad symptoms until much later.

Just my personal opinion...

Hi Logan. I'm so sorry this happened to you. I can't imagine going through this.

I wanted to suggest starting one of the diets for digestive health like SCD or Paleo. Many including me have found relief through simple diet change. they are also great for starting at the basics and eliminating all the bad foods out of your diet, then slowly reintroducing them finding out what causes you symptoms. I know within 12 hours if a food causes me symptoms. I have learned so much since starting the SCD diet. Check out my links in my signature if you are interested.