IBD, ostomy, life and me!

Last time I posted I had just started training for a half marathon... since then I’ve completed the Stow half twice... both times were amazing experiences. The second of my half’s was about 10 days ago.. since then the world has gone crazy... we are living in lockdown, fighting a global pandemic.... Coronavirus or Covid-19. This is a flu-like respiratory virus which has infected thousands.. of not millions of people world wide. It is an airborne virus which seems to survive for long periods of time on hard surfaces.  In the last 10 days the UK has plunged into what can only be described as a parallel reality... shops have been stripped bare of all products.. including toilet rolls, pasta and flour!  Schools have been closed for the foreseeable future meaning my wonderful y6 daughter may not finish primary school.. we are both currently working from home. It’s wierd being a teacher and not standing in front of a class... instead I’m setting work online either ...

I have signed up for a half marathon! The Stowmarket half.  I have run consistently all my adult life! I was running right up until just before I got really sick back in 2012, and it has always been one of things to help me focus on getting back to fitness. Up until now I have been content with running for pleasure, doing ark runs and the odd 10k.  I ran London back in 2004 and have done nothing further than 10k since however inspired by my running friends and fellow Ostomtes in some of the FB groups I belong to O have signed up to a half! The course is apparently “ undulating” .... Suffolk speak for pretty hilly! So I know I have got plenty of training to do, through the summer when the weather is hottest. I plan to cycle as well as run especially on the hottest days as I think this will help me to stay hydrated whilst still getting my body used to exercising for the time needed (just over two hours!) I have a hydration bladder so am training with that, and will ru...

A while ago I was sent a link to the application form to become an ambassador for the This Girl Can Suffolk campaign. I applied and was successful! The role of the 61 ambassadors is to help encourage and motivate other women to take small steps and overcome the barriers to become more active! I have always loved sport but as a working mum it is easy to fill the small amount of time that is available and exercise is often the thing that has to give.... So my pledge as an ambassador is to try to find ways of making exercise part of my daily routine so that I don't miss out! Whether that is walking the dog, cycling the school run, walking up stairs instead of taking the lift, running back from the school run, or doing a HIIT session after everyone's in bed to making the most of organised free sessions like parkrun or great run local! I have free use of the fitness suite at work which I never use so I am going to regain some work life balance and use it at least once a week! Me t...

Tomorrow is World IBD Day... it is the 5th that I have celebrated. Tomorrow I will be wearing purple in honour of the day. Prior to 2012 I had no idea about World IBD Day indeed I didn't know what an IBD was and I certain didn't know what an ostomy was! In honour of my 5th World IBD Day here are 5 thoughts to share... 1) Having an IBD IS HORRIBLE. It is debilitating, life changing, life limiting and exhausting. At my worst I had very little life. I couldn't go out with my family, I couldn't do things with my daughter or my husband. 2) Going to the toilet up to 30 or 40 times a day IS NOT normal! It is not the same as having a dodgy curry! It is exhausting. And time consuming! 3) The medical profession can be both brilliant ... they saved my life...but also awful at diagnosing IBD. It is much easier to diagnose IBS than IBD. Being told for years that I had IBS probably nearly killed me. 4) There is no cure for IBD... research is finding answers slowly, but it is ...

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...

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...

March 31 2012 - four weeks after having had major surgery to remove my colon I should have been fulfilling a lifetime dream to run in an Olympic stadium. I had been lucky enough to get a place to run in the National Lottery Olympic Park Run - a 5 mile run finishing in the New London 2012 stadium. I'd been so excited to do this and had been training hard pretty much right up till I went into hospital! When I came out of hospital our focus was on getting me fit and although I an kept trying to think of ways to get me to the park it was realistically a few weeks too soon! we went up to London anyway and I was gutted as the train went past the stadium but it was far more important that I was alive to spend a weekend with my family than I ran in a stadium. Like everyone in the UK we followed the amazing events of London 2012 from France and experienced the magic of the Paralympics for ourselves, spending a weekend experiencing goal ball, basketball and the athletics, savouring the amaz...

Waking up from my colon removal I entered a whole new world of appliances, delivery companies, "lingerie", prescriptions and support garments. My first challenge beyond getting out of bed, was to discover the contents of my "black bag" which the hospital stoma nurses guided me through - pouches, wipes,  adhesive removal sprays, scissors. All inhibitions, if I had any left after a week of using a commode were soon banished with a nurse watching me learn to empty my bag, and then change it.  To be fair... It's not rocket science....spray to release the stick, wet wipes to clean, dry wipes to dry, barrier wipes to protect and bag on. Oh and use the template that the nurse has made to cut the whole to exactly the right size! I was fairly determined to get home, particularly after I was moved onto a ward and I knew they weren't going to let me out until I could do this on my own. After two and a half nights in my private room being moved onto the ward ...

To cut a long story short I had a horrific weekend. The hospital was closed due to noro virus so I couldn't have visitors, I hadn't seen my little girl since I came in and I was being monitored in case my colon ruptured or burst! Monday was d-day....Ian came in to talk to the stoma nurse, but by the time they started talking the consultant and surgeon were already talking about ops and the danger of leaving my colon where it was any longer! It clearly wasn't responding to the steroids. I really had no choice whether to have a colectomy or not.... Indeed I suspect really the decision had been made on the Friday when the stoma nurse drew a cross on my tummy! Monday night was much worse for Ian than me! I was under anaesthetic having chunks of my bowel removed.... He was sitting waiting for me. We'd been told the op would be short.... Not sure who thinks a 6 hour op is short! But there we go... That was it my faulty colon was removed and I was left with a stoma, somethi...

May is IBD awareness month, tomorrow is World IBD day.....which got me thinking about the past 15 months.  Up until February last year I had little idea about IBD and I had no idea what colitis was... I knew loads about ibs, but that was where my knowledge stopped. Soon after my daughter was born my doctor had diagnosed my symptoms as irritable bowel syndrome. I was on fybogel and various pills during flare ups. Fine.... Generally life was ok. I could manage the flare ups most of the time.... but when it got bad I struggled....as did my husband and my little girl. Most mornings I would spend on the toilet, maybe going 8 - 12 times before leaving for work. Sometimes I would have to leave the classroom and hope I made it to the nearest loo in time. If my little girl woke in the night I would have to get her up, take her to the toilet, QUICKLY, then sort her out! One of the worst experiences was our first ever camping holiday. Even though our tent was only 100m from the toilet ...