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pursual t1_j59si64 wrote

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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CrohnsBoyTheThird OP t1_j59uf0a wrote

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 ?

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pursual t1_j59uz9k wrote

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.

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CrohnsBoyTheThird OP t1_j59xyax wrote

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 ?

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pursual t1_j59zhlt wrote

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.

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CrohnsBoyTheThird OP t1_j5a1061 wrote

Thank you for the time it took to write this and find the information for me. I appreciate it.

I will sip a little oral morpine later and go down this rabbit hole. Godbless.

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Bumchewer t1_j5bj5o3 wrote

I also got Crohn’s after a trip to Morocco and my symptoms just gradually got worse until I was diagnosed with the condition around 4 years later. I was sure it was from something I picked up on that trip as I had never had an issue with my stomach before that point. Doctors ran lots of tests but unfortunately everyone’s microbiome is different so it’s impossible to say what is wrong or right.

I wanted to try FMT but it is not available in my country as a treatment for IBD outside of trials. I did however do lots of research as I’m sure everyone does. It’s not like there’s much else to do when on another extended stay in the hospital. I found that another way to drastically alter your own micro biome. Basically you starve all the bacteria. Most bacteria is in your large intestine, so I stopped all nutrition from reaching this area. The only methods to do this are to not eat at all for 6 weeks or longer except using a milkshake, elemental 028 (has to be this type I’ve not heard of anything else that’s similar). You can not cheat at all during the process even once. These were developed for astronauts so they wouldn’t produce waste in space and get absorbed within the first meter of your small intestine. This allows the rest of your intestines to heal. They are insanely expensive and you need a lot. God bless the NHS is all I will say. Or to undergo a temporary surgery where they put you on a stoma for a short period before switching back this is obviously a lot more invasive and not as much of your system gets a break as the majority of your small intestine will still be in use and you’ll require 2 surgeries which will then need to heal. The gut takes a very long time in my experience to repair so my advice to anyone trying to heal themselves is to monitor a change over a 6month period.

From this point I added food back in to my diet as if I was a new born baby one item every few days keeping a diary of my symptoms and removing any that caused issues. I also continued using the shakes for a further 6 months to a year slowly reducing the amount. Took around 18months to eat a full diet again. I found Gluten, brewers yeast and eggs can cause me issues. Today I don’t eat gluten at all and eggs sparingly.

This was a huge undertaking for me as I had to make every single thing I ate from scratch for a very long time. Was it worth it? 100% I am completely symptom free, and I mean completely for the past 5 years. I no longer have to carry spare pants everywhere I go and having learnt to cook which this process basically forces you to do has improved my life on its own massively as an added bonus. I was discharged by the doctor just a few months ago so no longer even need to go for check ups.

Hope this helps someone.

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CrohnsBoyTheThird OP t1_j5bs0nt wrote

That is genius.

I'm totally stealing this 100%. I love experiments like this. Please message me, I'm going to start tonight!

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Conor_Stewart t1_j5dn9xs wrote

The NHS supported you doing this? It seems very far outside of their normal treatment plan for IBD.

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Bumchewer t1_j5eg83j wrote

Yeah they did, I was in hospital a lot at the time I was young mid twenties and didn’t want to go on a stoma. I had a great doctor, think he was one of the top guys in the country at the time and he gave it the ok. As expensive as the shakes are they were probably cheaper than me spending another month in hospital. I also tried all other meds but had life threatening side effects with a lot of them so it was a sort of last resort to get me of the steroids. The only drug that did actually work for me, for the 6months I was on it was remicade.

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Conor_Stewart t1_j5ij9sx wrote

How long ago was this?

Also did you have any lasting effects from being on a liquid diet for that length of time with your bowel pretty much not working for the entire time you were in the liquid diet?

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Bumchewer t1_j5imblw wrote

It was 2015 looking back at my photos. Yeah the lasting affect was I slowly got better from that point onwards. I was also on Remicade/Remsima started shortly after the shakes. But I was only on that for around 6months as I kept going in to anaphylaxis with it. Happened 3 times. The combination of the 2 in quick succession really helped me heal though and eating a good diet now has kept me that way. Will be 7 years now since I took any medication and over 5 since I’ve had any symptoms. I made lots of other changes as well but the shakes really stopped the downward spiral I was on and got me out of the being on steroids feeling better coming off steroids going in to a flare cycle.

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