Tag Archives: CrohnsandcolitisAwareness

Crohn’s & Colitis Awareness Week 2020

Posted on by
Reply

All of a sudden awareness week is upon me again. 2020 has been a unique year, and I haven’t done much to raise awareness of Inflammatory Bowel Disease (IBD) – I’ve been just getting on with life in lockdown, and then with children isolating as bubbles burst.

However, it is an important week, so I’m going to make a bit of effort!

Here in the UK, Crohn’s & Colitis UK have set up a challange or event each day this week. You can read about all 7 of them here. I’ll be doing the #4FactsChallenge tomorrow, and will wear some purple on Friday. If you want to get an insight into a day in the life of someone with IBD, then I do recommend the In My Shoes App which will let you follow along for a day.

I know a number of advocates have been struggling with there place in the IBD awareness world recently, as the emphasis seems to shift to an influence rmodel. It’s really positve to see people with hidden conditions and stoma bags featuring in advertising and marketing, and building podcasts and businesses. I’m not sure I see myself as an adsvocat enaymore – mostly because I don’t seem to find the time to dedicate to it, but I still occassioanlly drop into the forums and offer advice if I can.

I think what I would want people to be aware of this year is that some people with IBD will be really unwell. They will need frequent trips to hospital, be debilitated by their condition, or by a combination of several conditions making treatment difficult.

Another group might not yet have found the right treatment, or have drug therapies failing, so having been well will now be unwell again.

Another group, particualrly for those with Ulcerative Colitis, will have had surgery (perhaps several times) and will be currently well – like me.

And a further group will have found the right treatment for them, and will be well. Working, enjoying life and exercise with minimal impact from their disease.

All of those people have IBD. It isn’t a competition about who is most unwell, who has had the most surgeries or different treatments, or who posts most on social media. We are all of us united by a disease that we still have lots to learn about, so as you read through the various posts this week, remember that everyone’s journey is unique. If your recently diagnosed, don’t feel that surgery or a life unable to leave home and be away from the toilet is inevitable – it might not be your path.

Connect and share as you wish – but remember first and foremost to look after yourself – you don’t owe anyone anything in respect of your illness. Right now, the coronavirus restrictions mean everyone is emotionally drained, so try to just breathe and do what you need to do survive, so next year you can thrive.

My IBD Story Part 2 – #IBDAwarenessWeek

Posted on by
Reply

This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?