My journey to remission

Hi everyone,

To get started I'd like to share the following with you about myself. I am 39, male, professional. I have had Ulcerative Colitis since I was 18. Then as a result of my colitis I developed Reactive Arthritis around the age of 25. I am currently taking Remicade (infusion every 8 weeks), Imuran 200mgs a day (Azathioprine), and Salofalk granules 3 grams a day. Up until 12 weeks ago I was also using Salofalk enemas a few times per week.

My colitis developed quite late I am told. This was because I smoked from the age of 13 until I quit age 18. Within a matter of months of quitting my symptoms appeared. Apparently smoking/nicotine keeps symptoms in check so I had no idea that I had the disease. It is in my family with an uncle and a cousin both sufferers. My uncle has a colostomy bag, is in his 60s and had his entire colon removed around age 15.

Up until three years ago (around 19 years of remission) I was mostly in remission and was only required to take Dipentum to maintain my remission. I had two fairly acute flares during that time and they were both exactly a year apart at age 25 and 26. Both times a week after my final exams at university. Generally a dose of prednisone for a couple of weeks would fix me right up and I'd be back to normal.

From age 27 to 36 I never had a single issue. I would have colonoscopies every two years and would always walk away with clear results and told to come back in two years. Unfortunately around the age of 35 I had stopped taking my Dipentum. Then as a result of some serious stress in my life I flared up around age 36 (roughly 3 years ago this month).

There is a lot of information here so I've probably lost most people right now. Unfortunately my decision to stop taking Dipentum (with consultation of my GP mind you) was not a good move. I had thought that because there was no sign of my disease and I'd not really had any issues for so long that I didn't need it. Additionally, a rarely took it properly anyway.

What that meant was that I no longer responded to that drug. I tried for a month to get it under control with Dipentum and had terrible symptoms. Severe constipation, blood, mucous, stomach pain. Constipation you're probably asking. Because my colitis is in the sigmoid area the rest of my bowel operates as it should. However, once something passes towards the final 25cm of my colon it wouldn't pass as the area was too ulcerated and inflamed. Resulting in constipation and the other symptoms I mentioned above.

I was on Prednisone for roughly 15 months as well as Salofalk granules at the start. I was taking roughly 25 to 50mgs a day of Pred' and it wasn't doing anything. I was not going into remission. We tried steroid enemas again nothing. Then they put me on Remecade infusions while also on the Prednisone. I really didn't want to due to all of the side effects however after speaking with a surgeon he convinced me that I should just follow my specialists advice.

Eighteen months had passed and to be honest I thought I'd never get better I honestly thought this was my life from now on. I had no idea what I was in for and that i would in fact go almost three years like this. I was taken off the prednisone around 18 months and have been on the Imuran ever since. Even the combination of Remecade and Imuran did nothing if i'm going to be honest with you. At least the Remecade kept my Reactive Arthritis in check I guess.

I tried every single diet you've ever heard of over these last three years. If you name it i tried it trust me. In an effort to become "normal" again and get rid of the blood and mucous and pain i would try anything. Paleo, low fibre, no gluten, no dairy, trust me I tried it.

Three months ago I watched a documentary called 'What the Health'. It honestly changed my relationship with food. I was a massive meat and chicken eater up until three months ago. And after watching this movie and listening to them discussing all the hormones and crap that get pumped into these animals I thought to myself I've tried everything so what do I have to lose?????

I need to put context around this. I train regularly at the gym, I weigh around 100kg and have about 18% body fat. I used to eat a lot of meat to get protein etc. So this was a massive change for me. Three months ago I stopped eating chicken and red meat. Three days after i stopped my symptoms started reducing. Within a week I no longer required the enemas I was using.

Within two weeks my bowel motions had started to become regular again. There was no blood, no mucous, no constipation. Four weeks in my blood test showed that my crp levels had returned to normal after showing inflammation for three years. Two weeks ago I reduced my Imuran to 150mgs a day from 200mgs a day.

The best part of all is that I had a colonoscopy on Monday just passed (previous one was six months ago) and my colon was completely healthy again. I need to be clear about something. I don't think there is anything wrong with chicken or red meat however for some reason I believe that the hormones and antibiotics etc that are pumped into these animals sets my colitis off.

My body hasn't been responding to the most harshest of drugs. I tried all diets. And I sit here today three months after cutting chicken and red meat out in complete remission. I've already told my Dr I'm coming off the Imuran and I also want to reduce my Remcade dose.

If this helps even one of you then i'm happy.

Mark

Hi Chiron. No I didn't try that. I made the decision to cut them out and it worked. I won't be poking the Bear and experimenting now after what I just went through for three years.

Hi Mak37. I'm sorry to hear it didn't work for you. I agree with you that people could learn a lot. Like I said, I'll be happy if even one person is helped. Ive read many articles and journals showing a positive correlation between western diets and autoimmune disease. The trend and growth in autoimmune response has really picked up in the last fifty years and I think it is pretty ignorant to not look at our diet for answers. People from developing countries rarely suffer from these diseases yet when the same groups migrate to western societies you see a spike in all of the nasty autoimmune diseases. Doctors are only taught to treat the symptom not the cause.

Have you stopped meat entirely, or just chicken? What about fish?

I cut out all meat for the first four weeks including seafood. I then reintroduced fish after four weeks followed slowly by other seafood (prawns, bugs etc).

I also don't drink normal milk. I find that normal milk and some cheeses and yoghurts increases mucous.

I stick to almond milk in my coffee and only eat good quality dairy.

I have to admit, going vegetarian is not something I've tried yet for my UC. I read that meat produces a lot of sulfur and ammonia which can trigger UC in some. What worries me is that because I can't eat dairy, if I cut out meat I would basically be vegan and I don't know what that'd do to me.

Do you eat eggs?

Hi Chiron. Yes I stilll eat eggs and plenty of them. For home I'll buy organic. Obviously breakfast at a cafe or restaurant they will use what they want.

It's a massive change and like I said earlier I love my meat. Sometimes I think about just smashing some nandos chicken but in the end I know for a fact I'm in remission because of this change.

my old heart needed a new valve jan 2017, but all the plumbing and such were that of 30 yr old - no issues with it since the swap -

only other real issue is asthma and that's been on board since my 20's -

and of course, Irritating Bowels darn it - but mostly in submission the last 5 years i guess with occasional blips when i jump off the wagon -

not so sure about the certified part - altho Zoe the goat milk lady says it's real good for me - who am i to question her ?

Thank you 🙏🏻

Hi albear99. I quit smoking when I was 18 and then briefly took it back up again for about six months when I was 21. I was already in remission due to my medication at the time so wouldn't have noticed any different. about 18 months ago I tried to use Nicotine patches to get myself into remission and just gave myself a massive migraine all day so stopped.

The meds that got me under control at the start was straight prednisone for about a month followed by maintenance with Dipentum. Obviously the risks associated with smoking aren't worth the benefits. You'd just be exchanging one health problem with another.

Good luck!