Welcome to Issue #27.

This week is markedly different to the usual TV and food content. Buckle up!

For those of you who aren't aware I was diagnosed with ulcerative colitis at the end of 2020. It's one of the two inflammatory bowel diseases (the other being Crohn's) and I've seen figures of between 1 in every 120 to 200 people suffer from one of these IBDs. It's not always life threatening but is a serious disease and must be managed for life to try to minimise and prevent flare ups and further complications.

Backstory

My diagnosis came after I was passing blood in my stools for a good week and things weren't improving. A strong course of steroids almost immediately improved the situation and after a couple of months I was weaned off and felt back to 'normal'. I tried taking long term medication which is meant to help reduce the chances of another flare up, but seemed intolerant to it and so instead opted to fly solo (no medication) to see how I'd get on.

The specialists stressed to me that I'm almost certainly going to have another flare up at some point, but part of me still hoped this whole event had been a misdiagnosis, a one-off random bleed that they couldn't explain, but was better now and wouldn't ever rear its ugly head.

More recently...

The fact I'm writing about this should come as no shock that my hopes were false and after approximately 18 clear months signs started to appear that not everything was as it should be:

• The occasional cramping after eating

• A few more tummy rumbles than I might typically expect

• Feeling unwell after eating large quantities of food

• Not being able to tolerate certain food groups (coffee for certain, spicy food most of the time, and others seemed more random)

An unrelated GP appointment led to the IBD specialists getting in touch for a follow up to see how I was getting on and so I went through the joyous experience of another camera up the bum so they didn't have to just take my word for it!

They indeed found active inflammation in ~September 2022 and said that my options were another (milder) course of steroids or to try a relatively new drug called Vedolizumab, taken through regular infusions at the hospital, potentially for life.

I did my research and found that Vedo has a success rate of around 50% and I really didn't like the idea of having to go into hospital regularly (once every 1-2 months) for infusions. I opted for the steroids.

Another test a few months later unfortunately confirmed the inflammation, although reduced, was still not at acceptable levels and so I was strongly encouraged to start the Vedo.

I agreed to kick things off in December 2022 and I must have just slipped through the net because the team who were supposed to get in touch with me, never did. I was scared about starting the infusions (the list of potential side effects makes for miserable reading) and ashamed to say I didn't chase them up.

Diet

In January of this year I felt more determined to see if my diet could help reduce symptoms, saw my GP, was referred to a dietitian and used my work's private health insurance to see a couple of different specialists and ask for their opinion.

Everyone I spoke to confirmed that it's common for someone with an inflammatory bowel disease (IBD) to also have irritable bowel syndrome (IBS). Flare ups of the former is less dependent on diet, whereas IBS flare ups are very often impacted by what you eat. I started to research a low FODMAP diet and was thinking about when could I fit this into my schedule; I had my stag do last week, which wouldn't exactly lend itself to that, but again I was just making excuses.

I received varying advice from the dietitians, however what they unanimously agreed on is that I should be starting the Vedolizumab infusions, regardless of what I do with my diet.

Ulcerative colitis cannot be managed by diet alone

So I got back in touch with the team from December, arranged the preliminary blood tests required, had a consultation to go through any questions and booked my first infusion for this Tuesday 28th Feb 2023.

Today

The day before the infusion and something isn't right. I'm aching all over, exhausted, have a fever and spend most of the day in bed. By late afternoon I have diarrhoea and I assume I have some sort of bug.

I start to feel a bit better, did a PCR test at home which was negative, but the diarrhoea keeps on coming and when I rock up to my appointment at the hospital they aren't sure whether it's a good idea to start. I couldn't tell if there were any risks directly for me, or if they were just worried I could infect other patients (many IBD patients are immunocompromised due to the medication they take), but either way we rescheduled for next week.

Since coming home I've continued to slowly feel better, but the diarrhoea hasn't quite stopped. I have no idea whether I'm in the middle of a mild flare up, I'm getting over a bug, the wild (it really wasn't) stag weekend has taken its toll, if I'm stressed or something else, but I sure hope it goes away soon.

Closing Thoughts

I really do love my food. Eating out at delicious restaurants and learning to make tasty dishes at home are some of my favourite pastimes and it's sad to think if I want to stay as healthy as possible, these are likely to be somewhat restricted.

I've thought this week about branching off this blog into a more niche area and documenting my food journey. I'm well aware that everyone has different trigger foods, but when you read up there appear to be common food groups that are typically harder to process for someone living with IBD. Perhaps I'll try to come up with tasty recipes within those limitations and share them with anyone interested enough to listen.

Watch this space!

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Thanks for reading and have a great week.

Adam