Gastroparesis and me


Imagine never being able to eat a meal. Those chips you love or the pizza you used to look forward to are now a distant memory. You suffer severe nausea with one bite of food, it’s agony when it hits your stomach. You are so full up after one mouthful that you feel you’ve eaten a three course dinner. You can no longer drink a whole glass of water. Never again being able to have a meal out or enjoy drinks with friends.



Gastroparesis according to the nhs website - Gastroparesis is a long-term (chronic) condition where the stomach can't empty itself in the normal way. Food passes through the stomach more slowly than usual.




It's thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach. 
If these nerves are damaged, the muscles of your stomach may not work properly and the movement of food can slow down.

My journey with gastroparesis began about 4 years ago. Although I had symptoms on and off for a few years before. I think it was about October time and I ate a huge biscuit in a cafe in a supermarket. Straight away I was in agony  in my stomach and I struggled to eat from that day on. It took me about 15 months to get a diagnosis in London. Mine is caused by Ehlers Danlos  syndrome.I’d tried every medication there was and my weight plummeted. In July 2015 I received my first feeding tube. Before I got it I had to go on Tpn ( a central line placed in the neck delivery nutrients into the blood) as apparently I was to weak to survive the operation. This is me the day of my surgery. Paper knickers make a great hat.


I was ok for about two months on tube feeds but then it started to become really painful. Found out after being sent to see psychologists that it was caused by my very slow bowel.My weight plummeted again. I was convinced I was dying and put my affairs in order.I then started Tpn in November 2016. I did well on tpn. It’s a major change from tube feeds as everything has to be sterile.

This was me last June 



 Three months in, I got my first infection in my picc line and blood clot. I then had a Hickman line which I accidentally pulled out with my wheelchair. My second Hickman line got mrsa and then I had sepsis and my third Hickman line got a staph infection. 

Last November I decided not to have a new Hickman line put in because I was spending so much time in hospital. It was a tough decision to make as I didn’t know how I’d survive. I got given calorie milkshakes and saw the gastro about every three months. Sadly when you come off tube feeds or tpn , the support ends. There was no one I called call if I wasn’t managing to get the calories in.

Fast forward to about March this year. I’ve been having unbearable stomach pain. I was going back and forth to the gp who just kept giving me different painkillers. Eventually one doctor decided to do a calprotectin stool test. This is a test for inflammation seen in Crohn’s disease. My came back high and I was referred for an urgent colonoscopy. That colonoscopy turned into just a plain X-
ray by the inflammatory bowel disease nurse. She said see you in three months. I saw my gastro in the meantime who dismissed my test result but said he’d order an ultrasound if my local didn’t do it. My mum rang to ask them to book it. I have no date. I went back to the gp begging for help. More painkillers that didn’t work. My weight plummeting. Agony unbearable. 

Last Sunday was the final straw and I went to a &e. I never ever go unless desperate as I have a fear of hospitals now. I went through 3 different people to tell them why I was there and eventually saw a doctor. She did bloods and urine sample and gave me painkillers. When you have a complex condition there is no where to turn. She said to come back to a special gp clinic yesterday to see a gastro. I thought finally someone might listen. I hadn’t eaten or drank for 48 hours. 

Before I went I wrote down why I was there, a brief history, diagnosis and medication. My blood sugar was very low by then and I had glucose to drink but couldn’t drink it.I saw a med student first then a doctor. A patronising doctor may I add. Said they won’t do scans as I’m young and radiation is bad. I ask if it could be gallbladder but he said it’s probably just my condition. I think I’m allowed to have something wrong that entirely not related to my condition. I had given up asking for help. Luckily he called the emergency gastro. He was nice and actually gave me a painkiller that works. I was painfree for a couple of hours last night and ate a tiny bit. Sadly I have to ration myself and I’m only able to eat a little if I take one in the evening. The doctor book me for an emergency colonoscopy and ultrasound.

I think this is the toughest fight at the moment. I don’t sleep much due to pain. I’m rarely able to eat or drink. Not sure how my body is still going. It could be down to my existing conditions but I want other things ruled out first. I could go back on tpn but it’s not going to solve the problem. I’m still going to have no quality of life. I spend my days in bed as it gets to painful to sit in my wheelchair for long. I’m horribly thin. The lowest weight I’ve ever been. I don’t sleep much due to pain. I just have to sit and wait.




Gardening from a wheelchair

A few years ago my carer emigrated to Australia. Before she went she gave me her tomato plants. This is where my love of gardening and growing vegetables began.

Gardening is hard enough for the able-bodied person but when you're in a wheelchair you can come up against quite a few obstacles.

This is why I thought I’d write a post about the things I've found helpful. Lots of photos included, sorry.

In an ideal world I would have an allotment, but I don't think it's practical with a wheelchair, so I  brought the allotment to my garden.

First I bought a grow table from my local gardening centre. It's made by a company called Ehlo. This allows me to have easy access to whatever I'm growing in there.


   




I also brought two big wooden planters from a company called zest4leisure. I really love these as they are so sturdy. I tend to grow carrots and potatoes in these because they are so deep.



   




Let me introduce you to my potting shed too deep for me aren't into so I bought this little lean-to shed. I've used shoe racks as shelves as it means I can move them where I like. Please excuse the mess. I'm currently sorting it out.




   
  
If your into growing your own veg then you might want a greenhouse. I saw a beautiful wooden one that i really would of liked but it was huge and i wouldn't of been able to reach the shelves at the top. So i decided on this one.I also wanted glass doors but its not practical when i would probably run into it with my wheelchair and smash it. This one suits me just fine. It wasnt to expensive and is quite sturdy.Its also the perfect height for me.


   


Oh i cant forgot to tell you about pots. Yes i have loads. You can grow all your veg in them if you have a small garden and can be moved anywhere you like. Just remember to buy ones with holes in the bottom or drill them in.I found that out the hard way when my plants drowned. 



                   

My gardener told me about this little gadget. It attaches to the wall from a bracket and its a pully system. It means if you have a hanging basket you can pull it down to water it at your level and then it springs back up.



And lastly and most importantly, an accessible garden. Obvious i know. Not long ago my garden was all grass.Wheelchairs and wet grass do not mix, so i was coming into the house with muddy wheels. I was also not using the garden as i wanted to.So I decided enough was enough and decided to start paving it. I can now get along to my plants at the bottom and all the way around. Its not finished yet as im going to pave abit more of it.


I hope you've enjoyed reading this post and have maybe got some inspiration x

Handmade bunny and stitched cards

I have lots of nieces and nephews to buy gifts for but it’s coming to the point that I dread buying them. They have sooo many toys that I feel mine just get lost amongst the others.

So this year I decided to make them something instead of buying. I have a craftroom full of fabric that needs using up and I wanted a gift that was more personal.

I found this bunny pattern in one of my books and thought it would be perfect for my nephews second birthday. Apparently he loved it. I also made an elephant for my niece but he wasn’t very photogenic.



Next I thought I’d make some stitched birthday cards. May aswell use some more fabric up. Not that I enjoy it or anything hehe.



I’ve run out of energy at the moment but hopefully I’ll be back crafting again soon and won’t leave it so long to update my blog x 



Cupcake bouquet and class link

Last year I became interested in cake decorating. Well cupcake decorating to be more specific. I think it started when I went to center parcs and took a class their.

After browsing the internet or rather spending hours on Pinterest, I came across a cupcake bouquet class run by Shelly baker. I learnt so much from the class which is all online and here are the bouquets I made and the website link http://www.mrsbakerscakes.co.uk

     



   




     

I’m excited to try more piping techniques, so watch this space x 




I’m back and happy new year

i haven’t felt up to blogging lately and I’m not even sure anyone reads it. 

I’m finding things difficult mentally at the moment and I thought writing my thoughts down here might help. It’s been hard adjusting to life with no tubes. I mean I should be thrilled but it’s not an easy adjustment after having one for about 3 years. 

So far as you can see I’m still alive. There are a lot of days that I just can’t carry on, so I have to get through hour by hour.

I’m trying to turn things into a positive an to start living again and do things that are way out of my comfort zone. One of which was to catch a bus.

This has been my goal for about a year. I’ve been in a wheelchair for six years but never been on a bus in my chair. So today was the today. I had a friend with me so I couldn’t back out. We only went into town but to me it was a massive accomplishment and so glad I did it. The thought of doing it was worse than actually doing it.

I won’t give up fighting , it’s just going to take a while.

So I will leave you with a picture of a very cute squirrel I took at center parcs. X 


Halloween sweet boxes

I made these sweet boxes for my nephews using my silhouette cameo.


Honey I'm home

Laying in my bed at home, I'm reflecting on my hospital experience. I have to say it was extremely hard mentally. I've been in and out so much that I now cannot cope in a hospital environment.

I have 3 days of antibiotics, then my Hickman line got taken out. I didn't see a consultant until briefly yesterday. He is very rude. I was going on a few hours out yesterday anyway but the day before I met him in the corridor and ask if he could see me before I left. His reply was ' I'll see the sick people first'. Charming

When I saw him yesterday he asked there was something wrong with my aseptic technique as I didn't get infections when I had the nurses.

So after a week of not knowing what is going on I felt incredibly alone. From day one I asked to see a counsellor as I wasn't coping in there but she/he never came.

I saw the dietician just before coming home yesterday and she was lovely. Said a lot of people with my condition have frequent infections for some reason. It's just one of those things.

I have made the tough decision not to have another Hickman line placed. I wanted to discuss my options with a consultant but there was no one so I was on my own with the decision. My reasons are that I can't keep living my life in limbo waiting for the next infection. I haven't been tube free in about 2 and half years so it's a new thing for my body. Mentally I can't cope at the moment with the procedure.

Coming to terms with being on tpn is hard. It's a lot different to tube feeds as it's life or death if you get a bug in your line. There is no emotional support. This is why I've said no more. I want some time to be me and get my head sorted out. I see a private counsellor soon which I'm looking forward to.

It's not going to be easy but I will have weekly blood tests to keep on top of things. The hospital said I can ring anytime. It might not work and I may have to go back on it but at least I can say I've tried.

About Me

About Me

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Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x

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