It’s Been Too Long…

Over a year in fact. It has been a busy time with one thing and another, and if I told you everything now I’d probably not post again for ages!

A couple of things have brought me back. The first was the domain renewal notice! It’s going to be Crohn’s & Colitis awareness week soon (1st – 7th December) and I’ve seen a few people previewing that.

The final thing that brought me back was a whole range of posts that I’ve seen following the sharing of extracts of Matthew Perry’s book, Friends, Lovers and the Big Terrible Thing. In this book, Matthew talks candidly about his drug addiction and how an overdose led to a coma, and when he then vomited into his breathing tube and swallowed his vomit the toxicity caused his colon to burst. This led to periods of time with a colostomy and ileostomy, and 14 surgeries. What grabbed headlines and a focus was his account of frequently waking up covered in his own poop (’50 – 60 times’) of needing nursing assistance each time, and of a therapist advising him to use the thought of the colostomy bag as a motivator to come off drugs (which he did).

The focus on these ideas (seized upon in The Daily Mail in particular) have caused a flurry of people condemning both the comments and the coverage, but also some well considered posts about how we have to recognise that this has been his experience (my favorite of these is here). So lots has already been said, and I may well not add much to the discussion coming to it as late as I am, but let’s give it a go…

Firstly, it was new to me that someone might need a stoma in these circumstances – even if it was as a complication of the coma rather than the drug use directly. Having not read the book, I am unsure of the exact circumstances at the time, but I wondered if opioids might be causing overflow, making the stoma particularly difficult to manage. When I had my loop ileostomy (between the formation of my internal pouch and it being activated) it was very hard to manage and frequently failed leading to leakage and in turn sore skin.

Secondly, it struck me that Matthew did not appear to be getting high quality stoma care. When a stoma is first formed, it frequently changes size and shape, as well as the body changing shape (swelling from the surgery reducing, weight gain or loss) and the hole cut for the stoma has to be remeasured frequently. I don’t know what kind of hospital he was in, and if it had a stoma nurse to support him, but it sounds like he had a terrible experience. The interpretation of his experience being that having a stoma is terrible has caused some upset, as many people with a stoma see it as either saving there life, or giving them there life back.

If he was willing, I wonder if Matthew could front a campaign in the US, or even globally, to promote the value of high quality stoma nurse care? In the UK there is a national shortage of nurses, let alone clinical nurse specialists, and it would be great to have such a high-profile figure receive some information and education, and then say this is something patients need for quality of life. Could this bag be any stickier?

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s