Happy One Year SCD Anniversary to Me!

So here I am, at one year at last (January 2021). I started writing this back in November because I was terrified that I would miss important details if I did not give myself time to work through the year. I have been meaning to write about my battle with Ulcerative Colitis through diet for sometime but I honestly have only started to find this kind of motivation recently. 

On January 19th 2020 I had yet another day on the toilet coupled with an angry episode. One of the aspects of UC which is difficult to talk about is how hard it is mentally. Put it this way, for sure my wonderful family were suffering with me. For most of my adult life, I would usually weigh at least 64kg (141 lb). Sometimes I would even get to 70kg (154 lb). During this 2nd flare of UC (since I was diagnosed in 2017) my weight had plummeted to below 61 kg (134.5 lb). I am 5 ft 10 in and a bit so I look too thin. 

I had been thinking about starting SCD for a few weeks at this point. I had started noticing that on web forums people would say something like "sure I tried this or that drug, but what really helped me recover was SCD". 

Pre-diet background and timeline

- Diagnosed January 2017

- Prednisolone to remission: (February 2017 - April 2017). Prednisolone (September 2017 - June 2018)

- Entyvio or Vedolizumab (September 2018 - April 2019) || Anti-Integrin || Block white blood cells moving into gut

- Humira or Adalimumab (April 2019 - October 2019) || Anti-TNF || Block action of Cytolines

- Nothing: except emergency Prednisolone (October - November 2019)

- Trial drug "Lucent" - a type of Anti-Interleukin - Eli Lily (December 2019 - April 2020)

My doctor and I had decided to try the trial drug after I had very little success with biologics and because of my relatively young age I was eligible, in fact perfect for the trial. To start the trial I needed to stop the biologic, this is what kicked off a really tough couple of months. 

Nothing was working. I was working out a lot, fasting occasionally (once for 72 hours) and eating a gluten free/nearly sugar free diet but I couldn't keep things under control. By November it became obvious that I was in real trouble, I called my doctor and he prescribed me the steroid prednisolone at 40mg and then taper down to nothing. 

When my flare first started up I had taken prednisolone for nearly 10 months before trying the biologics. I was done with prednisone, horrible drug if taken long term like that. My experience was that I was very angry, then very sad then angry again! The worse thing is that prednisone is very effective for UC initially. When I was first diagnosed, I took it and I was "fixed" within 2 months. This second flare was a very different animal. Fortunately prednisone worked well and I survived until the trial start date in December.

Trial Drugs

The trial was randomised so that the patient did not know whether they received a placebo or the actual drug. Initially, after the first infusion I did not notice a lot of improvement. I nearly always passed blood and mucus with my stool and my bowel frequency ave. was over 6. However after this initial disappointment my symptoms did seem to diminish. Sadly I do not have the data for early 2020, because I was instead recording this info and sending it via a smart phone to the trial company, however I am fairly sure that bloody stool instances decreased and bowel frequency by the end of the initial 8 week starting period (March 2020) was between 3-4.  

Starting SCD

During February 2020 I was still struggling/thoroughly fed up, the trial drug was not helping much and my gluten/sugar free diet also seemed mostly ineffective. I had been reading about SCD for a little while and I decided to give it a go.

Straight away it was really beneficial although I was not doing the diet very well, at least following it a little + the trial drug kicking in really helped to give me a bit of freedom from symtoms. 

However, in March the initial phase of the trial came to an end and I was re-randomised. I will never know for sure, but I believe that at this point I was given the placebo.

In May my Dr and I made the decision to exit the trial and sign up for Stelara. Since then, this drug + SCD has really been working well to keep my symptoms in check.

Acacia gum

Recently (2021) I discovered that Acacia gum is not only SCD illegal but generally really bad for you. It is a thickener used in lots of things but I was ingesting it with commercial Almond milk. This is yet another example of how it is easier to say you are doing the SCD and subsequently realised that you really were not!