More than just a bag lady

I don’t watch Ru Paul’s Drag Race but after reading about the comments that were made about stoma bags I had to search out the clip.  Click here to watch the clip I’m sure to Ru Paul and Michelle Visage it was just a throwaway comment and they’ve thought no more about it. But to those in the Crohns and Colitis community it’s a big deal. Could you imagine the outrage if somebody made an inappropriate comments about being trans or gay? There would be uproar. But these kind of ableist ‘jokes’ are what disabled people have to put up with all the time.  I had a stoma bag for 5 years so let me dispel some common myths:  Stoma bags smell . They don’t. They have special charcoal filters in them to stop smells emerging. The only time you would smell anything was if it leaked (which shouldn’t happen often) or when it was emptied in the loo. But everyones shit stinks when you go to the toilet.  Stoma bags are awful. They’re not. In my case I ended up with a bag after my large b...

 I’ve just got off from a 3 hour zoom call with my Cheshunt Coffee Group and I’m buzzing. I’ve known this group of women for 16 years after we were put into a group together by the NCT after we all had babies around the same time. When the babies were little we would go round to each other’s houses or meet for coffee or lunch and as they got bigger it became trips to the park, swimming lessons, birthday parties and everything else that goes along with having kids. Living in Hertfordshire when the kids were born I had no family nearby and these ladies filled that hole and became like family to me. As some of us went on to have second or third kids there could be up to 12 kids running round each other’s houses while we sat chatting trying to reassure one another that we were good enough Mums and keeping one another sane. Some of my happiest memories have these women and their kids at their centre and when we decided to move to Nottingham I was devastated to leave them behind.  W...

 I’ve made the huge decision to transfer all my medical care from St Marks in London up to Queens Medical Centre (QMC) in Nottingham. St Marks is the UK’s leading specialist bowel hospital and I’ve been a patient there for the last 8 years and despite living in Nottingham for almost 6 of those years I have continued to travel down for clinic appointments and tests. But all of my hospital admissions have been at QMC and this has meant that over the last 5 years the team in Nottingham has patched me up when I’ve had emergency inpatient stays and then handed me back to St Marks for follow up. This has resulted in me effectively becoming trapped in a no mans land where the team at St Marks never see how truly unwell I am and the team in Nottingham see it but can’t treat me because I’m technically not their patient.  The last 12-18 months I’ve become more and more unwell which has made travelling independently down to London almost impossible and then when you add in Covid-19 it ha...

 It’s been years since I blogged regularly. Five years in fact and it seems crazy that so much time has passed. I would love to say that the reason I’ve not written for so long is because I’ve been fit and healthy and out there living my best life but in fact it’s the exact opposite. My health has deteriorated, gradually to begin with but then like a snowball rolling down a hill it’s picked up pace the last 18 months and gotten to the point now where I’m pretty much bed bound most days. I thought now seemed like a good time to start writing again for a few reasons: firstly it’s always been good for my mental health to get stuff out of my head and onto (virtual) paper and with the world in its current state trying to stay sane seems like a pretty good idea. Secondly because my bowel disease seems to be progressing I thought it would be good to keep track of it all so I can look back and have a record. And people used to tell me that they enjoyed reading my blog and if I can help som...

How the hell has 12 months passed since my last blog post? Firstly, and most importantly, my iPhone has stopped supporting the app for Blogger so it has meant that I've not been able to quickly type for 5 minutes here and there. I have kept meaning to get the laptop out and write a post but it's usually at the bottom of my to do list so it hasn't happened. I haven't had any major spells in hospital so I can't blame that but I guess the second reason is Life. It just keeps getting in the way and any spare ounce of energy has been going on trying to keep the house ticking over, the chores done and the kids fed and clothed. In the week I tend to have a couple of hours in the morning when I'm able to get stuff done but then I begin to slow down until exhaustion hits and I need to sleep for a couple of hours. Then the kids come home from school and general chaos ensues. Now they are bigger they don't even go to be that early anymore and so it could be 10pm before...

I haven't posted a blog for a while and one of the reasons is because the blogger app I use on my phone isn't working. It lets me in and then after 4 or 5 seconds it shuts down. I've tried deleting it and reloading it but the same thing still happened, time and time again. Because I write 99% of all my blog posts on my phone it's obviously made it impossible for me to write one. This one has been written on my iPad where the app seems to be working fine- touch wood. I guess if you're able to read this then it has worked and if I've typed this all for it to disappear I will be cursing like I have every time I've tried to use my phone app! Anyway, by my reckoning it's been about 7 weeks or maybe even longer since I last wrote. Lots has happened since then and I will try my best to update you without this turning into an essay! One of the reasons I like to use my phone is because I can easily upload any photos that I've taken or saved from the tinterweb...

I know it sounds mad but sometimes I actually enjoy it in hospital. Of course I don't like being more ill than usual but it's a chance for me to get a bloody rest. When I woke up at home last Thursday nobody brought me breakfast in bed or offered to put fresh sheets on. I almost forgot to take my medication because I had become so used to having a nurse sort all that out for me. Not only do I get to physically rest in hospital I am able to mentally shut down. I don't need to remember birthdays or which kid is going to which friends house or stress about what to feed my ultra fussy Big Fella. For a week or two (or sometimes more) somebody else has to worry about the minutiae of life and I can be selfish and just think about me.  The reason I say this is because since getting home I've become immersed in all this shit and I'm shattered already. The the kids going back to school is a major cause of stress. Big Girl was set 7 pieces of homework to do over the summer but...