Wound News – October Edition

Well I never thought I would be writing this post.

To recap, my surgery was at the end of January – a major operation to remove my failed internal pouch, rectum and anus. There were two wounds – the big stapled one at the firnt and the smaller one at th eback. This initialy healed well, then broke down and got really painful, and I ended up back in hospital in July for vac therapy for a week.

The vac therapy was syccessful in awakening the wound and remonding it had to heal – but it was still pretty big (about 7 coms deep). Since then it has been variously packed, had a gel treatment and is now being packed agin, We have got down to every other day, but it is still going on, And on. And on.

It isn’t painful which is good. It is still a bit leaky, and I have had to go back to the big inco pads in order to save on laundry. I’ve gone back to work full time, but it is really frustrating. The nurses at my practice, who have all had to endure far more of my bottom than should really be asked of them, have been great, and a few blips aside the bits of the NHS are now all working together. It is however taking much longer than I was prepared for.

As ever I am trying to be positive, but this week we are going on holiday as a family, and I had really been looking forward, this year, to be being able to swim with my little boy. He loves swimming, and his whole face lights up in the water. And I’m not going to be able to. Which means his mum is going to have to do it all. Again.

And I know it’s not forever, that it is getting better each day. It is frustrating to not be able to exercise, to still be wearing pads, to need shares in Parazone toilet wipes and be taking so many appointments at my local practice – all whilst returning to full time work and trying to parent and live life to the best of my ability.

Being realistic, I think this could still be goign on In November, hopefully be done an ddusted by Christmas. So watch out for more Wound News – but lets hope there isn’t too much more of it.

Happy World Ostomy Day


October 1st is World Ostomy Day, and also the UK Colostomy Association Colostomy Day with the strap line #fightthepootaboo – so today seems like a good day to talk about my ileostomy or Stoma.

So, science bit first. Ostomy and Stoma are often used interchangeably, although an Ostomy is the surgically created hole in the body for the discharge of waste, and the Stoma is the bit of bowel or untether poking out.

There are three main types – urostomy takes urine from the kidneys when the bladder is diseased or defective

Colostomy is when the large bowel or colon is brought to the surface of the skin to allow poo to leave the body

Ileostomy is when the small bowel or ileum is brought to the surface of the skin to allow poo to leave the body

There are lots of reasons for having them, including inflammatory bowel disease, cancer or trauma among others, and there are also various sub-categories which I won’t go into too much here.

I have a permanent end ileostomy because of ulcerative colitis – a form of inflammatory bowel disease. And this is my third Stoma.

Many Stomas are incontinent and require an appliance or bag to collect the waste from the body. These are often incorrectly referred to as colostomy bags, but could be urostomy or ileostomy.

Stoma 1

Stoma 1 was also a permanent end ileoatomy – the bit of bowel sticking out was the end of the ileum. I had this formed in 2005 after my colon nearly ruptured because of a severe flare up of ulcerative colitis which put me into hospital. This Stoma saved my life – it was that serious. Had the procedure not been possible I would not be here. Because of that I was very positive about it and adjusted pretty well. I even went back to fencing, with the aid of a Stoma guard.

Stoma 2

Stoma 2 was a temporary loop ileostomy – a loop of bowl that diverted poo away from my newly formed internal pouch – a surgical reversal to create a resovoir inside the body and no longer require a bag. This was formed in August 2006, and eventually closed in June 2007. It was a bit of a nightmare to manage as it was very flush to the skin and I need a hard convex bag to manage it.

Stoma 3

Stoma 3 is my current Stoma, formed in January 2015 when my bowel was diverted away from my failed internal pouch. We have had a few issues, but are managing OK!

So what it like! Well, you sometimes worry about the bag being visible under clothing, or smelling – which usually is in your head rather than the reality. Since my first Stoma 11 years ago the bags and accessories have got much better – I remember not discovering adhesive remover spray until about a month before my Stoma was closed, and now I use it all the time!

Sometimes I get a leak, usually at night because I’ve left it too long to change it, or eaten or drunk something that causes lots of gas and the bag gets pulled away from the skin (alcohol and sweet mixers often to blame here).

And I do like to use the disabled toilet where I can – the extra space makes it much easier to check the bag is intact, and to do a change of required. I’ve been fortunate to never be challenged about that as I ‘don’t look disabled’ but I know many people have.

And it hasn’t stopped me doing stuff – that has always bee ongoing symptoms of my condition, not the Stoma itself.

So, I hope you have a good day, and spread the word, there are more Ostomates out there than you think!

Some more thoughts about the first #IBDHour

So it’s nearly two weeks since the first #IBDHour and I am still really buzzing about it! There was a really great response with 8 – 10 people taking an active part throughout and some lurkers and people whos tarted off. There was interest from the USA and Canada, a participant from India and following on the Storify has been viewed over 40 times – not bad going!

I’m now putting together the artwork and questions for the second event on 20th October and hope it will continue to grow – there have been plenty of new followers so hopefully it will be bigger and better!

First #IBDHour – Great Success!

So last night was the first #IBDHour over on Twitter. After a slow start we had 5 or 6 people answering all the questions, and a few other lurkers liking and RTing.

If you missed it, you can see the whole thing through the magic of Storify here.

Next one is on 20th October. If you took part, let me know what you thought, and what topics you’d like to discuss in the future!


A busy week ahead


So I’ve just got back from a long weekend in the Cotswolds with some friends. It was nice, of not slightly washed out on Saturday which wiuth a two year old makes things a bit more challenging. I wasn’t able to use the hot tub (who knew they were not a great place for open wounds?) and I had a collosal bag leak at 4am this morning resulting in bed changing – I think it was a combination of beer, gin and too much Tzatiki…

Anyway, I am a dressing change first thing, then on Thursday night it is the first #IBDHour – I’ve done up some Hints, Tips & Advice for that is your coming along to take part! I’ve got  a few last things to prep, but I’m hoping it goes well – some of the big names in the IBD world have jumped on the RTing band wagon!

Last week I joined in with the latest #GetYourBellyOut picture sharing, and was really touched when people donated, and even got a few people doing there own belly selfies!

And finally, the voting stage has opened in the wego Health Activist Awards – you might remember me talking about my nomination a little while back. I am nominated in the ‘Best Kept Secret’ category, and would love it if you could endorse me (which means vote) – the top three endorsed nominees get through the the final, and it is going to be tough, but who knows – you have to start somewhere!

I hope you all have a great week, and maybe chat to some of you on Thursday at #IBDHour!