https://youtu.be/v8vyMgNRBgI

Ah I really thought you were my mate who lives in Bristol. But the age isn't a match still hope you get better though. Not a match I'm afraid though. Sorry bud.

https://youtu.be/C-9NZbR3OUA

I am !

I'm also handsome, ginger and turning 29 tomorrow. Is this a match ?!

Shoot me a DM !

I agree completely. For me it was all desperation. I was in a Yahoo group of fellow sufferers, and there was a discussion about an Australian doctor who had published a study in which he cured 20 people of colitis via fecal transplant. Some members of the group ended up going to see him. I couldn't afford to go, but I was able to download the complete paper he published via my brother's university account. It had a complete procedure. I basically just copied it, at home. My dad is a microbiologist, and my mom was a nurse, but it was simple enough for anyone to copy.

Since then a lot has happened in the fecal transplant space. I know there are freeze dried encapsulated pills that are used today. I think the most common disease that gets fecal treatment is c difficile. I doubt it's very easy to find a doctor that is knowledgeable about the space, and get in line for treatment, but there is definitely something to it with certain types of colitis/chrons.

Hey! I have been on both please let me know if you have any questions!

Hello! What do you wish people understood the most about living with Crohn's? I'll be the first to admit I'm quite ignorant on the subject but I want to know more. Hope you're as okay as can be buddy.

I love this question.

I don't stay positive and happy.

I accept there will be times, like now, where I'm trapped and in pain and missing my family and my birthday, and unsure if I will live much longer and I try and let myself feel sad about that and scared about that.

I prefer to be strong rather than positive.

Courage is a strange thing - it's a behaviour not a innate trait. It's a dipping line that follows you through life, sometimes it's high sometimes it's low, but I always try and remind myself to pick it back up again once I'm finished feeling sad.

I think we have to allow ourselves to have our emotions - not just the good ones but the bad ones too. Once we stop resisting our "bad" emotions and let them come and do their job we take all the struggle out and we feel them for normal and natural durations.

Ultimately, I've had a wonderful life filled with love and weirdness and funniness so when I am low I try and remind myself of how blessed I've been, even if for a relatively short time and I let myself grieve.

Are you in the UK? Only asking because you look a lot like my friend. I hope you feel better soon my dude. Love from the UK.

How do you stay positive and happy?

I'd really appreciate it if you could upvote this thread guys !

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I wanna spread more awareness about the disease and I also have a whole day to fill waiting for the doctors to visit my ward !

Also I'm not skinny !

People expect those with Crohn's to be frail and lanky but I'm around 180lbs at 175cm.

I try and lift a lot of weights and walk a lot. Also my go to safe foods are calorie dense and not considered healthy lmao. People see me eating potato chips, fries and chicken fingers and assume I'm making my disease worse ! Nothing I hate more than someone fit and well telling me I should eat dense fibrous foods like salads and raw fruit to be more healthy. Makes my blood boil

I wonder how many Crohn's cases are like this - dysbiosis of the microflora that goes undiagnosed. I think in general our healthcare systems are really poor at complex conditions, so it wouldn't surprise me if there were a lot of cases like this.

Doctors aren't like House MD - they're really not interested in mysteries or logical deduction they treat you like a tick box exercise - Crohn's -> 1st line treatment -> Steroids -> Send home.

How did you diagnose the altered makeup of your flora ? and how did you find a healthcare provider to organise and deliver a fecal transplant ?

I'm currently on a similar drug Humira - I'm just waiting on test results to tell me if it's in the right dose range and if I'm resistant to it. My hospital admission suggests it might not be doing the trick.

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I think remicade is the next bet - I know Mr Beast uses it for his Crohn's and he seems to be really healthy !

I get asked this a lot !

I don't use cannabis but I use a legal derivative called CBD - it's good as a painkiller and it really dampens down my PTSD anxiety without any intoxicating effects (minor a nice relaxed sleepy feeling)

However, like you mentioned, it helps to alleviate the symptoms temporarily, but I'm more concerned about the internal effects the disease has and it's course on my life and future - cannabis unfortunately doesn't help wit that.

Might help with some weight gain from the increased appetite and nausea blocking effects

Have you tried any medical marijuana to help you get some relief?

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Have you looked into remicade? It's working for my 99yo dad.

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I went to Morocco twice, I got sick both times. The second time I never got better, and after a very slow decline I eventually had colitis and Crohn's for years. Whatever it was that I caught in Morocco had altered the makeup of my gut flora. I tried special diets, probiotics, everything, but it wasn't until I had a fecal transplant that things changed.

I definitely feel for you man, those were some hard years. I remember buying Asacol from Mexico because I didn't have insurance. I remember going to a porta potty at a flea market, and seeing a huge turd in the bottom, and being jealous and wondering if I would ever make a turd like that again.

Deep ulcers in my intestine that breached blood vessels connected to arteries - I bled..ALOT !

I lost 3 litres of blood quickly on two separate occasions - I still suffer from PTSD from those incidents. It can be hard to see "harmless" blood in your stool without being convinced you're about to die again.

Those events really changed my relationship with Crohn's Disease from an unfortunately life-long condition you try your best to manage to a real threat to my life I had to constantly be on guard about.

That's probably the worse consequence of my diagnosis - the survival mode I've been in for 12 years.

I do ! Well most of it.

I've had two operations on my terminal ileum, no stoma yet though !

That's very interesting...How did you deduce it was external factors and not genetic ?

Do you still have your colon? Have you ever considered a fecal transplant? That's what I had to do to end my Crohn's, but mine was triggered by external factors, not a genetic disposition.

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