IBD, ostomy, life and me!

This was my #ccuk story that I shared in 2014 for World IBD day. I shared it with my immediate colleagues at work as part of a cake sale that I held in our work room. This year, with whole buildings going purple and, alongside a colleague we upped the awareness raising stakes. We organised a college wide bake sale and invited staff and students to #gopurple! As part of the promotion of our bake sale I sent an email out to all staff in the building with a link to some earlier blog posts. I hoped staff would read these and understand why World IBD Day is so important and why we need to raise awareness of both Crohn's and Colitis! I know people followed the links and read the posts....I can monitor the traffic on my blog and it was great, if not slightly terrifying to know that potentially everyone I work in the same building as knew that I have a Stoma and an ostomy bag! But that is how we are going to raise awareness , not by hiding but by putting ourselves and our stories o...

I am currently at home, lying on my bed, unable to sit or stay in any position for too long as I recover from my proctectomy.....or in lay man's terms...the excision of my rectal stump. I have to say the current state of my arse or lack of it is one of the most painful things I have experienced! However I'm fine and will recover well! This, along with my previous op when I was given my ileostomy are direct consequences of Ulcerative Colitis. Being at home has allowed me the joys of watching daytime TV and to surf the net finding interesting stories. Last week I came across a fabulous open letter from Sam Cleasby's blog http://sobadass.me . Sam's comments and experiences reminded me of my own experiences using accessible toilets! Sam's letter went viral and yesterday she appeared on BBC Breakfast. http://www.bbc.co.uk/news/health-31636415 The interview that Sam gave and the way the BBC approached this topic was excellent... Professional, sympathetic and informati...

I find it hard to believe that I have had my stoma for nearly 3 years. Life is so different now than it was in early 2012. I am a completely different person. I am healthy, fit, strong and able to share a fulfilling life with my family. For that I am eternally grateful. I have blogged before about the final operation that I need to remove my rectal stump. I have put it off until now as I haven't been ready to face another operation. But now I am  - in my head it is time. It is time for closure on this. I had my annual EUA in December - while I was talking to the surgeon about the procedure he asked what was next. I said that I wanted the op done. He then said that he was retiring on March 31 but he thought he could fit it in before then!!!! That's slightly earlier than I anticipated but at least it will be done. Although this is a major operation and I am not underestimating it at all I also know that I am in a very different place from when I had the last op. I am fit an...

I am often trying out new products ... Particularly pouches. I try a range, find one I like and stick with it for a while then I find out about some other new or improved product so give that a go. Sometimes it works, sometimes it doesn't. Ostomy companies are generally happy to give out free samples in the hope that they will get your custom... It's like any business.... Up until now I have researched and tried out products off my back because I wanted to, there has only been personal reasons for this, I have begun to post short feedback on the website as I feel this might help others. Back in April I received an email from a lady, Mathilde, from Coloplast in Denmark who had read the "Toilets, trees and other things" post that was shared on the Ostomyland website. Mathilde asked if I would be interested in in reviewing Coloplast's Brava Lubricating Deodorant. Mathilde explained that this product helps to eliminate the odour from ostomy pouches, as well as preven...

Funny - its a year since I started writing this blog! World IBD day has come round again and I thought it would be a good time to reflect on the last year .... A year ago I started writing the blog as an outlet for me to share my experiences of living with a stoma, and to help raise awareness of IBD. It has become a way for me to work through some of the issues that I have had to face as well as being a way into the wonderful online support network that exists for ostomates. Through writing the blog I have learnt to rationalise many of the day to day issues that come with having an ileostomy - it has been a way for me to express how I feel whether anger and frustration or nerves and uncertainty. I have become more confident and less self conscious about my Stoma and I have found away of sharing the ups and downs with my friends. After I published my first blog posts I had several friends respond sharing some of their own experiences with bowel conditions. I have discovered a wonderf...

I've been thinking a great deal recently about what happens next.....  When I had my initial emergency op the surgeon left my rectal stump in, just in case I wanted to have a "j - pouch" created. The J pouch is an option that basically joins the end of the small intestine to the rectum and creates a small holding pouch so that essentially you can regain "normal" bowel function. I have never fancied this as a realistic option. There are several reasons.... Mainly because initially you return to having to go to loo several times a day! No thanks ... It's not for me although I know it's a great option for many people. However as I don't want this operation I have to have my rectal stump removed! Why? Well essentially as it is not used now it is a dead organ. While it is inside me there is a gradually increasing risk of it becoming diseased again, or developing cancerous cells. At the moment it is fine, although I still get a very small amount of mucus ...

I am becoming an expert on toilets ... Especially their ability to flush! Since having my Stoma I am still slightly self-conscious. I do worry that people might notice the bag under my clothes, especially if it's a bit full, and I worry that if the loo doesn't flush properly stuff will be left in the loo or around it. I tend to give loos a rating now. The best ones get a one flush rating! Generally these are home loos, or good public loos were there is a full flush option AND you can hold the flush down. Most public toilets are a two flush rating! And then there's Novotel rating! We stay in Novotels quite often and for some reason their loos just do not flush well! I can often alter the rating of a loo by preparing the it before I empty .. The simple trick of lining the bowl with some paper before emptying can promote a loo to a one flush rating. The best flush I have come across was on a really old (like over 100 yr old) loo at a little station (Weybourne i think) on t...