More than just a bag lady

Whilst out in the car this afternoon I got a phone call from the hospital. I recognised the voice straight away as one of the deputy sisters from the ward- the same one that took my bloods the day before I went on holiday. Apparently Dr B had reviewed the results and most of my levels are holding reasonably steady but they’re worried about the results of my liver function tests. So much so that they want to see me again for more tests as soon as I’m back from holiday. Oh joy! Unfortunately being on TPN can cause damage to the liver as the liver has to work harder to process the feeds. This can lead to long term damage to the liver which can ultimately lead to liver failure and the need for a liver transplant. Obviously I’m nowhere near that stage yet but that’s why it’s so important that my team continue to monitor my levels closely.  Today the stitches securing my Hickman line had to be removed. They stay in place for 3 weeks to stop the line from coming out while it embeds itself...

Lots of people tell me “I don’t know how you do it” or “I have no idea how I would cope if I were you”. Well now you can find out. Crohns and Colitis UK have launched an immersive app called ‘In My Shoes’ which gives people a 24 hour experience of what it’s like to live with Inflammatory Bowel Disease. From depleting energy levels, to managing pain, rushing to the loo, trying to juggle work and a social life, this app will give users a first hand experience of how these conditions can affect every part of your body and every aspect of your life. I would LOVE it if people reading this downloaded the app and then let me know their thoughts on it and the experience. It’s a free app and if it gets too much you can turn it off or delete it, which is obviously something I don’t get to do with my illness.  Click on the link below for more information and details on how to download the app. https://www.ittakesguts.org.uk/share/in-my-shoes-app

Now this is a sign I honestly didn’t think I would get to see this year. But I did and I’m writing this from our holiday home for the week near Porthleven. I’m in bed though as the last few days have been busy, busy, busy and I’m exhausted. But I’m in Cornwall with my family so I’m happy.  Before going away I had a super busy day. Big Girl was going to school to collect her exam results and because of bloody Covid she had to book a time slot rather than just turn up like we all did in pre-pandemic times. She booked her slot ages ago and as is always the way with my life, the law of Sod came into play because I was sent a letter with an appointment at the gynaecology clinic at exactly the same time. I tried to change it but the clinic was full so I resigned myself that this was going to be yet another life moment that I would miss as a result of my illnesses. But then a couple of days before the clinic called and told me that unfortunately they had to change my appointment time from...

  That was yesterday. I think I did too much on Monday and yesterday I just couldn’t function. I needed to pack my clothes for holiday but just couldn’t get out of bed. So I decided it was going to be a rest day. I stayed in bed and dozed on and off until about 6pm. Hubby and Big Fella were off to football training and before they went Hubby asked if I might be able to get my case packed. He wants to be organised this year and get everything in the car ready to go a day before we set off instead of our usual last minute rush. So I forced my arse out of bed and started to pack.  But I didn’t just pack, I ended up feeding the dog, loading the dishwasher and the washing machine and a few other chores around the house. When I went back upstairs to put the last few bits in my case I knew I had overdone it and didn’t feel well. I could feel that I was about to pass out but there was nobody in the house to catch me so I hit the decks. Eventually I got myself up and ended up phoning o...

Today has been a good day. I managed to get up and have a shower, which is an achievement in itself and then the four of us went into the city centre to get the last few bits we needed for holiday. We put the wheelchair in the boot incase I needed it but I was able to manage with just my walking stick. Today was mainly shopping for Big Fella cause he keeps growing. Annoying how kids do that isn’t it? Usually I order everything online and get him to try it on at home because he’s a bloody nightmare at shopping but I didn’t want the hassle of having to do the returns. At first he refused to try stuff on, saying that he would try it on at home and then it could be returned if it didn’t fit but I frog marched him to the changing room and told him that I would take away his Xbox if he refuses to try the stuff on. Funnily enough he was a bit more cooperative after that! After a couple of hours we met up with Big Girl’s boyfriend and his family and we all went to Pizza Express together. I am ...

You would not believe the amount of medical supplies I need to take with me for the holiday. I have just spent the last 2 hours, yes that’s right, 2 hours, getting it all together and packed ready for next week.  Here is all the stuff laid out on my bed… …and that’s not everything!  I still have some meds to collect from the pharmacy and Hubby has already put 2 packs of Tena pads in the car. When we went away a few years ago he put them in the car right at the end and when we pulled up at a service station I got out the car only to find he’d squashed them up against the window in the boot for all the world to see! 🙈 He’s promised not to do that this year! There is also a box of 12 saline bags that I’m taking with me in case it gets hot or I start to get unwell and need extra fluids. And obviously my feed, pump and rucksack can’t be packed until the very last minute because I will be using them everyday.  Calea, the company that deliver my feed and all the ancillaries wil...

Yesterday I think I almost sent Hubby over the edge. I wasn’t feeling too great on Tuesday and stayed in bed all day and then yesterday woke up and vomited. Hubby heard me and came running into the bathroom. I think he wanted to literally pick me up, throw me in the car and rush me back to the hospital because he was frightened it was the beginning of a bowel obstruction. But I had had days like this in hospital where I just wasn’t good and I wanted to go back to bed and ride it out. I promised him though that if I continued to vomit or felt any worse I would tell him and we would go straight in. I think the cause of the sickness was the fact that I had dared to have a cuppa soup the night before and my insides were just registering their protest. Well, it’s been duly noted and I won’t be making that mistake again! I woke up today feeling a lot better and decided that it would be a good day to take Big Girl for the piercings she wanted doing before holiday. She got her 3rd holes in her...

Yesterday I received a phonecall from the ward to tell me that they had reviewed the bloods I had done on Sunday and the consultant is a bit worried about some of my levels are low. They want me to get repeat bloods done later this week or early next week at the GP surgery. So I rang the surgery to book this. Should be simple right? Wrong. I rang 3 times and each time the call failed to connect. In the end I decided it would be easier to go down to the surgery and speak to a human being face to face so rang Dad’s taxi service to take me.  I explained what the problem was and asked to book a blood test but was told that until the surgery had received the request from the hospital they were unable to give me an appointment. I told them that we were due to go on holiday next week and that if I waited until they had the info from the hospital then chances are they wouldn’t have any appointments available before we go away. So the receptionist checked with someone else who said that the...

  Today marks the beginning of Home Artificial Nutrition awareness week. The charity PINNT uses this week to raise awareness of the people that rely on artificial nutrition to stay alive...me being one of them.  Over the last 7 years I’ve been on and off full TPN feeds which is where all your calories and nutrition is provided in liquid form and through a central line, in my case a Hickman line in my chest. I was first on TPN after the 2nd part of my j-pouch surgery in 2014 when my bowel didn’t ‘wake up’ and start working as expected. This was when I spent the best part of 11 months in St Marks hospital in London while they stabilised me and got me well after things didn’t go quite to plan after the surgery. By the end of the 11 months I was off full feeds and onto fluids only as my bowel wasn’t absorbing fluids and without fluids through my Hickman line every day I would literally have dehydrated and died. More recently my bowel has decided to give up the ghost and eating an...

I am home!  I AM HOME!!! After 127 days in hospital I honestly thought this day would never come. But it has and I am finally at home.  Friday afternoon I fell asleep in the afternoon and didn’t feel too good and then I was asleep literally all of yesterday. The nurses were a bit worried cause I was feeling crappy so they got one of the doctors to come and review me. I already knew we were aiming for discharge on Sunday and I was worried that this would set me back but I also didn’t want to come home to bounce straight back in again. The doctor didn’t seem too worried but ordered blood tests just to make sure I wasn’t brewing anything.  So this morning I waited impatiently to have the blood tests done which didn’t happen until almost lunchtime. Hubby had been texting me almost hourly asking if I would still be coming home, neither of us daring to believe it would actually happen. I didn’t know what to do with myself because I didn’t want to pack and jinx it but also knew ...