More than just a bag lady

Yesterday I had my first clinic appointment with the consultant in Nottingham. As much as I love St Marks one thing I won’t miss about their clinics is them running 2-3 hours late (although that did give me the time to spend with my friend Kitty who would always accompany me to the clinic where we would sit catching up, putting the world to rights and discussing our bowel habits without a care in the world!) The last week I’ve been feeling even worse and eating is becoming more of a challenge again. There’s not a lot I can manage now that doesn’t send me into hours of agony and if I eat any more Quavers I will start to look like one! The fatigue is crippling and I’m pretty much stuck in bed although I am trying really hard to get outside for a little walk with Buddy when I can even if it’s just for 10 minutes.    At the clinic I was greeted by one of the Deputy Sisters from the ward who just so happens to be one of my favourite nurses on F22. She is quite possibly one of the h...

 Today I’ve had a busy morning involving a trip to the dentist and the hospital. I had to go to hospital to have some blood tests done to see how my haemoglobin levels are doing on the new iron tablets. I’m not sure there’s going to be a big improvement cause I still feel exhausted and breathless a lot but hopefully I will have the results back before my appointment with my consultant next week so we can make a plan. I originally went to the GP surgery last week to have the blood tests but after two nurses spent 45 minutes trying (and failing) to find a vein they admitted defeat and decided the hospital phlebotomists would be the best people to do the tests.  I’ve mentioned in a couple of previous blog posts that I’ve had toothache for the last couple of weeks and I’ve tried my hardest to put off going to the dentist but it’s been getting bad. Every time I eat or drink anything I’m getting a shooting pain in one tooth in particular but there are a couple of other teeth that ar...

When I was an inpatient recently I asked about getting the Covid vaccine because I’m classed as Clinically Extremely Vulnerable (ECV). Apparently other patients on the ward had gotten theirs but I was told that it wouldn’t be possible and that I would have to get in touch with my GP. Apparently staff within the hospital had been using the system to book vaccinations for friends and family by saying that they were an inpatient and as a result they were now only vaccinating staff who could show their ID badge.  I can understand that people are worried about the people that they love but to think that people abused the system in that way makes my blood boil.  So when I was discharged I rang the GP surgery and was told that they had absolutely nothing to do with the vaccination programme and that I would need to get in touch with NHS England. So I called NHS England and spoke to an adviser who told me that according to the system I wasn’t eligible for a vaccination. I explain...

Following on from my last blog post I ended up spending a week in hospital before my Hickman line was fixed. I had to have a second blood transfusion cause the first one only raised my haemoglobin from 70 to 76g/l and it needed to get above 80g/l. So on the Sunday the second bag of blood was given and I hit 86g/l which meant that I could be added to Monday’s list to get me line repaired (or replaced if it couldn’t be fixed).  But when the doctors did their ward round they told me that there were staff shortages in Interventional Radiology (IR) (which is the department that deals with fixing or inserting new lines) and that they would have to see if they could do it the next day. Turns out that they couldn’t do it on Tuesday either so I was really starting to feel fed up about being stuck in hospital when I technically wasn’t unwell. But I did get on Wednesday’s list and thankfully they were able to repair it which turned out to be literally a 5 minute job. I was so pleased that the...

A lot has happened this week and unfortunately I’m writing this blog post from a hospital bed. I know- I can hardly believe that I’m back in again. This is my 5th admission in as many months and Ward F22 at QMC hospital is starting to feel like a second home! So what happened this week and why am I in hospital?  On Wednesday I had a flexible sigmoidoscopy which is basically a lot like a colonoscopy but without going quite so far into the bowels. This was the first one I had in Nottingham and they do things a little differently to St Marks. I did have the exact same procedure done at St Marks a few days before Christmas last year but there were some problems meaning that they couldn’t see what they needed to. Firstly because I was in so much pain with my bowels they couldn’t give me the enema needed to wash out my J-pouch and small bowel and then they couldn’t cannulate me which meant I couldn’t be sedated. Because of the pain they could only get the scope in a few centimetres and c...

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...