Hi Folks,
It's taken nearly 5 years, but in May 2010 I had my Crohn's confirmed.
2007 after many flare ups and a bad (or maybe no) reaction to the meds I ended up having surgery. Which didn't go to plan and ended up as 4 operations in the space of 10 days and a 5+ month spell in hospital.
The last op they had to leave my stomach open as it was too dangerous to operate further due to the weight I'd lost and the amount of scaring.
I had to wait a whole year for the wound to heal naturally before they could operate again to reverse a stoma and remove the last hole/infected part of my small intestine.
Anyway that last op went well and they sorted out to scarring and now it doesn't look too bad. (Apart from my gut is often swollen, giving me a 6months pregnant look which I've had for years. Not good when you're a bloke).
I managed 2 years with no meds and being able to eat and drink anything I wanted with no problems. I thought what ever I had was gone completely as at the time the surgeons couldn't agree if I had crohns or not, so I was just told I had "suspected Crohn's". Obviously I preferred to believe I didn't have it.
In May for my 35th birthday, I had a flare up which kept me in hospital for 3 weeks. Was told they were gonna put me on Humira.
Went and had my first injections and all went well except 1 week later they told my I was carrying TB, so they would need to stop the Humira and treat me with Anti-Biotics to clear the TB. That's a 3 month course which I'm half way through. Just had another flare up again and they've put my on steroids, but are looking to put me back on the Humira early. I find out on Tuesday about this.
So since May I have been researching foods and started seeing a nutritional therapist. Problem is my doctors tell me Crohns is not food related.
They've put me on a low residue/low fibre diet for a while to rest my bowl.
My nutritional person gave me a diet which I've found almost impossible to follow, although I have taken on-board some advise like -
Baby food on toast. I bought a juicer as she was adamant I should try cabbage juice. I made it, but the look and smell mixed with the fact I don't like cabbage made me gag and I couldn't drink it.
Marmite I eat more and I have tried to cut dairy out as much as possible. I switched to a lactose free milk. Tried a soy milk but don't like the taste. And the other milk alternatives (rice) don't make good tea.
She also suggested 2 supplements which I have literally just started taking which are: L-Glutamine Powder and Saccharomyces Boulardi.
In the last few days through my own research I discovered the specific carbohydrate diet online and have ordered the book from Amazon to give it a try. The scarey thing for me with that is no rice, pasta or potatoes as I love all of those very much. But for me I want a healthy life without meds, so am willing to give it a shot.
In the last 5 years since first becoming ill I have already given up fizzy drinks, which was very hard as I used to drink coke with every meal and most times when I was thirsty. I was hooked on the stuff.
Alcohol I have given up which was also very difficult as I enjoy going out an socialising. I have been drunk maybe 2 times in the last 5 years.
I used to smoke weed a fair amount (mostly just weekends) which was my only vice left. Since my last flare ups I haven't touched it though as my nurse said smoking reduces the effectiveness of the meds I'm on.
I thought I'd give you all my history so you can understand where I'm at with Crohns.
Why I joined here is to find out more about the conflicting info I have on foods. I read here and across the net lots of people seem "ok" eating certain foods which are banned on the SC Diet. Also the foods recommended to me to rest my gut on the low res / low fibre diet also conflict with the SC Diet. And some of the foods my nutritional therapist recommended are also on the banned list. The good thing is there are foods & drink on there which I love and have been scared to eat for years. Like chilli, cheddar cheese, onions and certain alcohols.
I've asked my docs about the SC Diet and they just said by all means try it, but it's not proven and they insist Crohn's is not food related?
I told my Nutritionist about it and she said I should try it, but not until I've been told to come off the low res / low fibre diet.
I have loads of rice, pasta and wheat products in my kitchen that I have bought but and now thinking I shouldn't eat. Basically I feel scared to eat almost anything at the moment.
Before my illness I used to weigh around 75kgs and was a regular at the gym. Since being ill the most I've weighed is 65kgs and haven't made it back to the gym yet. Plan on joining up again soon as I miss it and feel weak.
Any advise, tips from you guys would be very welcome. If you have any questions I'd happily answer as best I can.
If anyone had similar experiences with operations as me I'd be interesting in hearing about them. I kept a photo diary of my ops. The pics are pretty horrific though. I'm happyish now with how my scars look though.
I know that was a lot to read, so thanks if you read it
It's taken nearly 5 years, but in May 2010 I had my Crohn's confirmed.
2007 after many flare ups and a bad (or maybe no) reaction to the meds I ended up having surgery. Which didn't go to plan and ended up as 4 operations in the space of 10 days and a 5+ month spell in hospital.
The last op they had to leave my stomach open as it was too dangerous to operate further due to the weight I'd lost and the amount of scaring.
I had to wait a whole year for the wound to heal naturally before they could operate again to reverse a stoma and remove the last hole/infected part of my small intestine.
Anyway that last op went well and they sorted out to scarring and now it doesn't look too bad. (Apart from my gut is often swollen, giving me a 6months pregnant look which I've had for years. Not good when you're a bloke).
I managed 2 years with no meds and being able to eat and drink anything I wanted with no problems. I thought what ever I had was gone completely as at the time the surgeons couldn't agree if I had crohns or not, so I was just told I had "suspected Crohn's". Obviously I preferred to believe I didn't have it.
In May for my 35th birthday, I had a flare up which kept me in hospital for 3 weeks. Was told they were gonna put me on Humira.
Went and had my first injections and all went well except 1 week later they told my I was carrying TB, so they would need to stop the Humira and treat me with Anti-Biotics to clear the TB. That's a 3 month course which I'm half way through. Just had another flare up again and they've put my on steroids, but are looking to put me back on the Humira early. I find out on Tuesday about this.
So since May I have been researching foods and started seeing a nutritional therapist. Problem is my doctors tell me Crohns is not food related.
They've put me on a low residue/low fibre diet for a while to rest my bowl.
My nutritional person gave me a diet which I've found almost impossible to follow, although I have taken on-board some advise like -
Baby food on toast. I bought a juicer as she was adamant I should try cabbage juice. I made it, but the look and smell mixed with the fact I don't like cabbage made me gag and I couldn't drink it.
Marmite I eat more and I have tried to cut dairy out as much as possible. I switched to a lactose free milk. Tried a soy milk but don't like the taste. And the other milk alternatives (rice) don't make good tea.
She also suggested 2 supplements which I have literally just started taking which are: L-Glutamine Powder and Saccharomyces Boulardi.
In the last few days through my own research I discovered the specific carbohydrate diet online and have ordered the book from Amazon to give it a try. The scarey thing for me with that is no rice, pasta or potatoes as I love all of those very much. But for me I want a healthy life without meds, so am willing to give it a shot.
In the last 5 years since first becoming ill I have already given up fizzy drinks, which was very hard as I used to drink coke with every meal and most times when I was thirsty. I was hooked on the stuff.
Alcohol I have given up which was also very difficult as I enjoy going out an socialising. I have been drunk maybe 2 times in the last 5 years.
I used to smoke weed a fair amount (mostly just weekends) which was my only vice left. Since my last flare ups I haven't touched it though as my nurse said smoking reduces the effectiveness of the meds I'm on.
I thought I'd give you all my history so you can understand where I'm at with Crohns.
Why I joined here is to find out more about the conflicting info I have on foods. I read here and across the net lots of people seem "ok" eating certain foods which are banned on the SC Diet. Also the foods recommended to me to rest my gut on the low res / low fibre diet also conflict with the SC Diet. And some of the foods my nutritional therapist recommended are also on the banned list. The good thing is there are foods & drink on there which I love and have been scared to eat for years. Like chilli, cheddar cheese, onions and certain alcohols.
I've asked my docs about the SC Diet and they just said by all means try it, but it's not proven and they insist Crohn's is not food related?
I told my Nutritionist about it and she said I should try it, but not until I've been told to come off the low res / low fibre diet.
I have loads of rice, pasta and wheat products in my kitchen that I have bought but and now thinking I shouldn't eat. Basically I feel scared to eat almost anything at the moment.
Before my illness I used to weigh around 75kgs and was a regular at the gym. Since being ill the most I've weighed is 65kgs and haven't made it back to the gym yet. Plan on joining up again soon as I miss it and feel weak.
Any advise, tips from you guys would be very welcome. If you have any questions I'd happily answer as best I can.
If anyone had similar experiences with operations as me I'd be interesting in hearing about them. I kept a photo diary of my ops. The pics are pretty horrific though. I'm happyish now with how my scars look though.
I know that was a lot to read, so thanks if you read it
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