Gastroparesis Is Ruining My Life

I don’t even know how to start this post. Tears won’t stop falling and my head hurts so much. But I know I want to write it because for me writing is cathartic and also I hope it helps to bring awareness to chronic conditions.

I have Gastroparesis. It is sometimes called ‘delayed gastric emptying’ and quite literally means paralyzed stomach. There are varying degrees of severity from how bad the condition is and the capacity at which the stomach is working. Some people only have mild symptoms and manage with still being able to eat with help from some medications. But others struggle with severe nausea and/or their symptoms are so bad that they are tube fed into the Jejunum, bypassing the stomach.

Gastroparesis is a condition whereby the stomach doesn't work properly and food often sits for days before being moved through to the small bowel

My Life With Gastroparesis

It’s ruining my life. I wish that was an over exaggeration, but it’s not. Things got pretty bad in 2015 with vomiting non-stop every day for months on end. I had to have wide bore NG tubes in to drain my stomach and medication to encourage my stomach to empty. It was then that I was diagnosed as having a gastric outlet obstruction following surgery to remove my stent. And when things continued to get worse, I was wrongly diagnosed as still having gastric outlet obstruction, which turned out to actually be Gastroparesis.

I can’t even begin to explain how truly awful living with this condition is. Vomiting on a regular basis or having food sit in my stomach for days, rotting is not fun. It’s debilitating.

For months I’ve been convincing myself I’m doing okay. I even took myself off the liquid diet I was told to be on and stopped my nutritional shakes because I so desperately wanted to be ‘normal’ again.

Starving For A Cure

I didn’t realize until my recent admission into the hospital last week that I’d lost quite so much weight. I say I didn’t but it was more a case of I didn’t want to believe it. Of course, I noticed my clothes were getting baggy and hips were starting to dig into my mattress when I slept. But I kept saying to myself ‘oh maybe the material has stretched’ or ‘the mattress is knackered’.

I can’t eat properly and it’s not through lack of wanting. I love food. Like, a lot. But my body doesn’t. I can manage a few bites of something and that’s it. If I push myself then I’ll vomit. Sometimes those few bites are okay, other times my stomach distends and rots for days. It’s as awful as it sounds.

What Happens Next For Me

My dieticians are very concerned and unhappy with my weight loss and current weight. Not to mention my lack of nutrition and calorie input. I was scheduled to have an NJ tube placed this Monday and go onto tube feeds. However I was wrongfully discharged by an on call doctor who wasn’t the slightest bit interested in my weight and nutrition issues.

I’m due in to see my consultant and dietician in a few weeks. After speaking to my dietician when she called today, she wants me in to see her and on feeds ASAP. But ultimately, a plan needs to be agreed with my consultant due to my complex anatomy.

I am quite literally starving and in all honesty, I’m fucking terrified.

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25 Comments

  1. Kim
    22nd February 2017 / 11:46 pm

    I didn’t realise things had gotten so tough for you, this sounds awful! Fingers crossed that the doctors can help properly <3 miss seeing your face on YouTube, sending strength πŸ’ͺ

    • 23rd February 2017 / 12:23 am

      I’ve been running away and pretending things weren’t so bad. One of the reasons I’ve not been on YouTube is because I’ve really hated seeing myself on playback. I’ll be back soon lovely. Thanks for your sweet message xo

  2. Heather Link
    23rd February 2017 / 2:09 am

    That’s awful. I hope your Dr is able to get things back on track and you feeling better. I have gastroparesis too, just mild, and even that is a nightmare. I can’t imagine it worse.

    • 23rd February 2017 / 4:01 pm

      It’s awful isn’t it? Sending love your way xx

  3. Red Herring
    23rd February 2017 / 2:32 am

    Much love, hon. I never know what to say to you about all the things you’ve had to endure. I know you probably don’t feel like a strong person, but I’m sure that all of your followers, friends and family think otherwise. I hope that doctors can get you taken care of (properly!) and that your pains ease.
    You’re always in my white light and thoughts.

    • 23rd February 2017 / 4:06 pm

      I have my days of feeling strong but others of not. It sort of ebs and flows, if you know what I mean? Thank you for your kind words. I appreciate them lovely xx

  4. Rebecca
    23rd February 2017 / 3:00 am

    So sorry you are going through this πŸ™ Sending many prayers and love your way!

    • 23rd February 2017 / 9:17 pm

      Thank you x

  5. Laura masters
    23rd February 2017 / 7:44 am

    I hope they manage to help you Hun and find you some relief of some kind . It sounds awful I can’t imagine how you must feel . Keep us posted Hun I wish there was something we could all do to help xxx

    • 23rd February 2017 / 9:18 pm

      Thanks lovely. Will do xo

  6. Christy Bartle
    23rd February 2017 / 9:21 am

    πŸ™ I really don’t know what to say. It saddens me to read this and hope things get a bit better with the tube (hoping you get a bit stronger so you feel better able to live a bit more/ enjoy life) x hugs x x

  7. 23rd February 2017 / 9:52 am

    I’m so sorry to read about your current situation in life πŸ™ Sincerely hoping that things look up for you soon. Sending much love x

    • 23rd February 2017 / 9:32 pm

      Thank you for your sweet comment! xo

  8. Sarah Price
    23rd February 2017 / 2:08 pm

    Thank you so much for sharing your experience, I know it’s not easy to put yourself out onto the internet.

  9. Ava Meena
    24th February 2017 / 9:49 pm

    I’m so sorry, my heart goes out to you. A friend of mine has this and she had surgery, I’m not sure of the details but she’s been in the hospital for weeks and is still not doing well. I wish there was more that could be done for you.

    • 24th February 2017 / 10:41 pm

      Was she having the gastro pacemaker fitted? I am sorry she’s unwell. I will keep her in my thoughts. Sending love xx

  10. 25th February 2017 / 4:41 am

    Oh Tamsin this was heart breaking to read. So sorry you are going through this. It sounds like for the most part you have a good team looking after you which is good. Wishing you luck with where this next takes you. Keep positive – you will come through this a stronger person x

  11. 25th February 2017 / 11:29 am

    I am so sorry you have to experience this. It sure doesn’t sound very nice. xx

  12. 25th February 2017 / 1:35 pm

    It’s really lovely that you found the words to write about it! It can’t even begin to imagine what you’re going through but it’s interesting to read about how much something I had never heard of can affect someone’s live so much! I hope you can get the right help from the right people!

  13. 25th February 2017 / 2:56 pm

    I’m so sorry you’re having to live with this. I hope the Drs can help you and get you back to a happier place.

  14. 25th February 2017 / 8:43 pm

    Oh lovely πŸ™ This sounds like an awful awful condition. I’m sorry. It sounds like some of the ‘professionals’ you are seeing though need to focus a bit more! People telling you different things and such! Hope you start feeling a bit better soon!

  15. 25th February 2017 / 8:58 pm

    Oh my goodness this sounds absolutely awful – I am so sorry you are suffering so much. I hope you get the support and answers you need. Kaz πŸ™‚

  16. 26th February 2017 / 4:14 am

    Oh my goodness, I am so so sorry. I wish there was a cure for this, I can not even begin to imagine how hard and horrible this must be for you – thank you for spreading awareness of this condition as I myself have never ever heard of it! I hope you get the help you need ASAP and that you will soon start to feel better. xxx

  17. 27th February 2017 / 12:29 pm

    My goodness, I’ve never heard of this condition. This must be horrific. I couldn’t imagine having to deal with this in a day-to-day routine. You’ve never shown any struggles!! You’re such a strong person.

    Sending love – Amy.