More than just a bag lady

Looking back on my New Years Eve Facebook memories I spot a recurring theme. Each year I reflect on the shit time I’ve had with my health and hope that the coming new year will be better. But they never are. Every year my health seems to deteriorate and brings me a set of new challenges to deal with. But every single New Years Eve I hope that this will be the year where my luck will finally change. I continue to have hope because I honestly have to believe that one day things will get better. Things cannot always be this hard. But I’ve been thinking that for almost 14 years now and sometimes it’s tough to stay optimistic.  So what do I wish for in 2023? I would like to spend more time at home than in hospital this coming year- something I’ve not managed to do in the last 2 years. I want the immunosuppressant medication to work; for it to keep my bowel disease in remission and ultimately remove the need for any surgery. But if it doesn’t and I do need surgery then I hope that this w...

I’m currently in bed with a temperature, hacking cough and feeling like I’ve done 10 rounds with Mike Tyson. It would appear that I’ve succumbed to one of the many winter bugs doing the rounds which isn’t surprising given that 1) I’m immunocompromised and 2) both the kids have been poorly recently. To be honest it’s been a bit of a miracle that I’ve not been sick sooner. But despite knowing that the germs would eventually get me I’m still feeling rubbish and very, very sorry for myself!  The thing that does concern me is that if I get an infection then I cannot have my weekly injection and I’m worried that if I miss a dose then I will end up suffering with my bowels as a consequence. This comes on the back of my appointment earlier in the week with the community pain team where I sat there and told them I was the most well I had been for years! I obviously spoke too soon! I had a MDT (multi disciplinary team) meeting with their lead pharmacist and their occupational health/CBT spec...

What have I been up to the last couple of weeks? Living is the answer! I’ve been able to take the kids to school, do the food shop, have family dinners, see family and go out with friends. And it’s been bloody brilliant!  That’s not to say that everything has been hunky dory. I’m on a reducing dose of steroids and 10 days ago my dose reduced from 30mg to 25mg. Within 2 days I was in agony, going to the toilet all the time and passing blood. So I rang the IBD nurse, who spoke to my consultant and back up to 30mg I went. The plan now is to taper off the steroids really slowly so instead of reducing by 5mg every week the reduction will be every 3 weeks. Hopefully that will give my body time to adjust to being less reliant on the steroids and stop me from flaring when the doses get lower.  I think the adalimumab injections are definitely helping. Since being on these weekly I have felt soooo much better. But to get 5 good days a week I have to have 2 crap ones. I inject every Mond...

I’ve been home now for by almost 2 weeks and I’m loving it! Since getting out of hospital I’ve been able to start doing all the things that I wanted to do with Hubby and the kids; just boring, mundane, everyday things but things that make me really happy. I’ve been able to do the school runs, help the kids with their homework, get their rooms tidy and even managed to help them set up online banking. We’ve been able to sit down as a family each evening for dinner which is really lovely as now the kids are older it’s pretty much the only time we get together as a family.  Big Girl has been poorly this last week with really bad tonsillitis and a cold and has been off school. She is the worst patient! She’s been extremely demanding and has had me up and down to her every 5 minutes! But she’s hardly ever ill so I can’t really complain and it’s actually nice to be needed. Although it has wore me out! Big Fella has had mock exams so a lot of my time in the evenings  has been spent t...

Last Thursday I had an outpatient appointment with the Community Pain Team (CPT). Believe it or not there is no long term, chronic pain management service within the hospital, which to me is crazy, but probably a result of them not having the budgets for one. As a result when I came out of hospital in the summer I had to go and see my GP and get a referral into the CPT.  While in hospital I am visited a couple of times a week by the pain nurses from the chronic pain team so they can keep an eye on my ketamine and morphine doses. They advised me to attend the outpatient appointment if I possibly could so that when I went home there would be some provisions in place to help manage my pain. One of the things I’ve been looking into and talking about with the doctors and pain nurses is Narcotic Bowel Syndrome. This is a relatively newly recognised condition where the bowel can be damaged due to long term opiate use. It’s becoming more widely recognised and studied as a result of the opi...

I had really hoped to be at home by now, spending time with Hubby and the kids during half term. But instead I’m writing this from my hospital bed. Frustratingly there doesn’t seem to be any hope of me going home any time soon and I’m getting a bit fed up.  In my last blog I wrote about the steroids rollercoaster that I’ve been on for the last few weeks. This last week has again seen me on IV steroids yet again after having an awful flare up last Thursday. It seems that after a few days on oral steroids my bowel goes “erm, not having that!” and throws a hissy fit. The pain goes off the scale; the only way I can describe it is it feels like I have swallowed razor blades and they’re steadily working their way through my bowels shredding me from the inside out. And then there’s the fun of either having to go to the loo 30+ times a day or the alternative when everything grinds to a halt and nothing comes out. Things were so bad that I ended going down for another CT scan last Friday so...

I feel like I’ve been on a steroids rollercoaster during this recent hospital admission. When I first came in 3.5 weeks ago the doctors started me on IV steroids to try and get the inflammation from this Crohn’s disease flare up under control. After a few days things seemed to improve so I was moved onto oral steroids with the hope of being able to go home but within a couple of days the pain and constant trips to the loo had returned. So I was put back onto IV steroids and had a CT scan to see what was going on.  The scan showed there was severe inflammation in my small bowel so as well as having IV steroids it was decided to start the adalimumab injections again. I had originally started this immunosuppressant treatment back in May/June but had to stop when I got a line infection and Covid. So I was given the 4 loading doses again and we crossed our fingers that it would help.  Things appeared to get a bit better and back onto oral steroids I went. I even managed to escape f...

This last week has been full of ups and downs in lots of ways. It’s been a strange one at home as Hubby has had to work away a couple of nights this week and even though the kids are old enough to be by themselves and look after themselves as a Mum you can’t help but worry about them. The dog went to the dog sitter so he would be walked and looked after but that meant that he wasn’t there at night to guard the house and protect the kids which I didn’t like. And because my parents are on holiday it meant that in an emergency they weren’t just up the road like normal. And I dread to think what they’ve eaten this week! It’s probably all been from various takeaway places but I suppose if they’re not cooking then they can’t burn the house down right?? Thankfully there were no fires or any other kind of emergencies, the kids have survived and all is ok.  But things haven’t been quite so straightforward for me. The good news is that I’ve restarted adalimumab- the immunosuppressive medicat...

I’m back in hospital. If you don’t count the 1 day I spent in A&E in Cornwall I’ve managed to stay out of hospital for about 8 weeks, which for me isn’t bad. But all that changed on Tuesday.  I’d been getting really bad pains since Friday and when I say bad pain, I mean like 10/10, take your breath away kinda pain. I’m used to being in pain and like to think I’m pretty good at dealing with it but those few days were absolutely awful and completely floored me. The pain was different to normal though and I was hoping that it might stop as suddenly as it started so I spent the weekend gritting my teeth trying to just get through it.  The only way I can describe the pain is to say that it was like having labour contractions; the pain came on, it’s absolute agony and is so intense and then it goes off again. It can last a few seconds or minutes and the ‘contractions’ can be minutes apart or two or three can follow in quick succession. When they come I can’t walk, I can’t talk a...

 When I got back from holiday there was the usual pile of post on the doormat that needed sorting out. But in amongst the bills and the take away menus was an A4 brown envelope. Anyone receiving benefits knows that brown envelopes strike fear right into the very heart of you and this particular letter didn’t disappoint.  Oh joy of joy! It’s time for my PIP review! PIP, or Personal Independence Payment, is a benefit paid out to anyone with a physical or mental disability, regardless of whether or not they’re in work. It’s designed to mitigate some of the expenses of being disabled in an ableist world. For example, if you’re unable to use public transport as a result of your disability you might need to get taxis to appointments or to the shops and obviously that costs more. So you use your PIP money to help with that.  But as is the case with any benefit you apply for the hoops you have to jump through are ridiculous. The forms you have to fill out are very long, repetitiv...

I made it to Cornwall!! To be honest there were times that I didn’t think I would be well enough and there were other occasions where packing all the medical supplies and sorting my feed out all got a bit too stressful and I just wanted to stay at home. But I didn’t. I went and we had a lovely 2 week family holiday.  I would love to say that I was well the entire time but we all know that’s not real life and probably never going to happen in my world. There were a few days each week where I stayed at the house while everyone went out for the day because I was either completely exhausted or just not feeling good. But I just tried to w joy the good days and do as much as I was physically able to do.  Unfortunately I did see the inside of Truro hospital again. This was my worst fear and driving down through Cornwall on the way to St Ives we drove through Truro and past the hospital and it was a little bit triggering to both me and Hubby. We had really hoped I wouldn’t have to go ...

I ordered some  CathDry dressings  at the start of the year with the plan to start going swimming again but my recent hospital stay meant that I never actually got round to using them. I’ve been packing stuff for my holiday and when I was sorting through all the medical stuff I need to take I came across them. The house we are staying in for the first week has its own pool and last year I had to sit on the side watching everyone else having fun in the water. So I decided to pack the CathDry dressings incase I decide I want to go in.  But because I’ve never actually used one before I thought it would be a good idea to have a trial run at home. So this morning I put one on and jumped in the shower. I was still hooked up to my feed so had to feed the giving set wire back out of the dressing so I wasn’t expecting it to be watertight… but it was! I was only in the shower for 10 minutes but when I got out my Hickman line was completely dry!  (Yes, I’m aware it looks like a...

On Monday the Council House and Green’s Windmill in Nottingham lit up green to support HAN week. Unfortunately I wasn’t able to go and see them as we had gone to Birmingham to watch some sport at the Commonwealth Games but my incredible parents went and took these photos for me.  My story also got picked up by The Mirror and Walesonline…seems crazy to think of how many people may have read it and might have learned about artificial nutrition for the first time.  https://www.mirror.co.uk/news/uk-news/mum-describes-15-year-long-27629325.amp https://www.walesonline.co.uk/news/real-life/i-diagnosed-bowel-disease-15-24638471.amp I’ve had lots of positive feedback, especially from friends and family about the articles but there is another side of living with bowel disease and all it’s associated complications. Lots of people have told me I’m ‘brave’ and ‘inspirational’ and I’m not a big fan of those words. Because what these people don’t see was me sat in bed crying this morning bec...

Home Artificial Nutrition (HAN) week this year is 1-7 August and way back in May I got in touch with buildings in and around Nottingham asking them to light up green in support 💚 This will help to raise support for  PINNT , the charity that supports people like me that need artificial nutrition to survive.  Nottingham Council have agreed to light up the Council House in the Market Square on 1st August to mark the start of HAN week. And Greens Windmill have also said they will take part and light up the windmill. Greens Windmill holds a special place in my heart as my Grandad used to take me, my sister and cousins there as children. I’ve continued the tradition with my kids and God-children and have so many happy memories there.  I also contacted:  ▪️Nottingham Castle ▪️Newark Castle  ▪️Nottingham University Hospital (NUH) Trust who have the ability to light up QMC and City Hospital ▪️Kings Mill Hospital which is about 13 miles away in Sutton in Ashfield  ▪...

I got a new Hickman line last Friday.  I started to write a blog post on what happened but I just can’t. I’ve tried and tried but every time I try I manage to write a few sentences and then I have to leave it. The whole experience was extremely traumatic and I’ve accepted that for now it’s too difficult for me to write  about in any great detail.  In a nutshell I went down to have a new line put in last Wednesday. Because of issues with my veins after about 20 minutes of trying the procedure had to be abandoned. During those 20 minutes despite lots of local anaesthetic and sedation I was in a lot of pain and found the experience really awful. As a result it was agreed that it would be best if the insertion was done under a general anaesthetic. It should have happened on the Thursday but they had some emergencies in theatre and I got bumped off the list. Any how it happened on Friday afternoon.  I know they must have had some issues putting the line in as before they...

So this just popped up on my Facebook memories… It was 9 years ago today I went down to theatre and had my first J-pouch surgery at St Marks. I was so hopeful that the operation would solve all the problems I had been having with my stoma and give me back some quality of life. Little did I know that it wouldn’t be the end of my journey but rather just the start of another awful chapter.  Knowing what I know now would I still have had the surgery? Honestly, I don’t know. The last 9 years have at times been pretty horrendous. The surgery left me incontinent, in pain, with bowels that don’t work and needing artificial nutrition through a Hickman line. I’ve had multiple bouts of sepsis and more hospital admissions than I could possibly count. But there’s no way any of that could have been predicted by the doctors and surgeons all those years ago. And I was having a pretty tough time trying to get by with a stoma that didn’t want to work which was why I was willing to give the surgery a...

So Covid and sepsis didn’t kill me but this bloody heatwave might… I have spent lots of time in hospital during the summer months but given that is likely to be the hottest day ever on record then it follows that this is the highest temperature I have ever experienced as an inpatient.  So let me tell you a little bit about where I’m staying. Firstly, let me begin by telling you with absolute certainty that there is NO AIR CONDITIONING here on the wards at QMC in Nottingham. The ward I’m on is on the top floor of the hospital and as we all know, heat rises. The room I’m in is South West facing meaning that it gets the sun shining directly into it from about 11.30am until it goes down, making it  very hot. It’s like trying to sleep in a greenhouse! I’ve been keeping the curtains closed and that helps a little bit but it’s still as hot as the Devil’s armpit.  The windows on the ward have restricted openings, presumably to stop us from throwing ourselves out of them on bad ...