Bumchewer

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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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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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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