IBD, ostomy, life and me!

I've been really struggling with my hydration over the last couple of weeks. I'm not really sure why. Hydration is always an issue for people with an ileostomy... the colon is the part of the body that is responsible for absorbing most of the water that we need. With no colon it is much harder for my body to absorb water so I am really conscious about drinking water and using rehydration tablets. I do a reasonable amount of activity.... running, gym, dog walking and we travel quite a lot too. I often feel thirsty but rarely have struggled the way I have over the last few weeks. It has been really noticeable when I go for even a short time without drink... I quickly feel tired, headachy and sluggish. I am really struggling to get back to normal hydration. At the moment I have constant dry lips, headache and I feel tired. I am drinking well over 2 l of water a day and hydration salts daily. I am hoping that this is just a spell and that it's linked to being tired and hav...

It's another World IBD Day .... Another day to help raise awareness of Inflammatory Bowel Disease and the first time in four years that I have been free from hospital visits. I had a total proctectomy last year and finally got signed off from the hospital. I am officially IBD FREE ...there is no more diseased and ill sections of my body left! However events like this are hugely important. Increasing numbers of people are being diagnosed or tested for forms of IBD, but diagnosis is a long slow process, often resulting in people becoming seriously ill before they get a final diagnosis. IBD is life threatening, there is no cure. It is a debilitating condition that severely impacts on quality of life. When I was at my illness it was difficult to go out, to go to work, to look after my little girl ... I lived with a constant fear of having to be near a toilet ... And I mean NEAR a toilet .. Like seconds away. If I needed to go I needed to get to the toilet instantly. And I certainly...

Today is World Ostomy Day. Most people won't know this or even care and if I'm honest I didn't up until 3 1/2 years ago when my Ostomy saved my life!  That's pretty much the long and short of it... If an amazing surgeon hadn't taken out my colon and formed an opening with my ileum on my stomach I wouldn't be here. I wouldn't be watching my daughter swim. I wouldn't be able to go out for a curry with friends. I wouldn't be able to run. Before I was given my ileostomy I honestly didn't know much about them. I guess the concept of pooing into a bag on my stomach was pretty grim. It certainly freaked me out when the surgeon came in and told me that they were considering removing my colon... But you can't live without a colon! Actually you can... Very well...and a whole load better than I could live with my diseased colon. So ... What do I want you to know today? 1) My Ostomy is the single most important reason that I am here today! 2) I look...

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...