My story – Will this pain ever end?

My life in pain.

For as long as I can remember I’ve lived in some sort of pain or discomfort. I was about 19-20 when it all started. I’d finally given up, dropped out of University and moved home. I then managed to overcome a year-long mental health condition, that’s a story for another day, and get back to normality. I’d bought a flat, was working full-time as a gardener and life was good.

One day at work I remember bashing my ribs off the lawnmower and later that day being sick. For years after that I struggled with sickness after eating, severe reflux and pain across my ribs and chest. I was back and forth to see doctors without really getting much answers. Test after test the doctors slowly began to understand what was causing so much pain. I had a hiatus hernia, severe reflux, heartburn, I would be sick after eating and pain in my ribs. The doctors finally concluded I had a condition called Heartburn and Gastro-Oesophageal Reflux Disease or GORD for short.

This condition was managed and controlled by medication for years. Until slowly the symptoms got worse until in 2011 they could no longer be controlled by medication. The next step was surgery. A laparoscopic 270 toupet fundoplication, or keyhole fundoplication wrap. I was told by my surgeon that the procedure over time might need redone or loosen off to allow a recurrence of my symptoms. However, the pros outweighed the cons so I decided to go ahead with the procedure.

Lying in pain on a hospital bed with a bed pan on my head
Before surgery in 2011

The surgery was performed in November of 2011 and in my eyes was a complete success. To this day I’ve not had one episode of reflux, been sick or even burped. To read more about this you can check out my post Hospitals, my love-hate relationship. 

What can’t go up must go down…

So the operation was a success but with that success came a whole host of other problems. My pain in my ribs had gone but was replaced with pain in my abdomen and bowel. This is a common side effect of the type of operation I had. However, I didn’t expect it to be as overwhelming as it was. So for the last 6 years I’ve lived with Irritable Bowel Syndrome pain and severe flare ups probably around 3 or 4 times a year.

Again over these 6 years I was on medication to try control the IBS. Nothing I tried seemed to work. I would get pain, cramps, constipation, diarrhea and bloating almost every day. Slowly building up throughout the day. Those reading this with similar problems will know that the gas produced has to get out somehow. So if it can’t go up it must go down. For some that might be very embarrassing but I embraced it. Looking at each little pass of gas as a success. Each evening I would slowly deflate and begin the process the next day.

The flare ups arrived when I became blocked up and couldn’t pass gas. If this happened I could spend days or weeks in constant pain trying anything and everything to alleviate the pain. Without much success and generally common medications just adding to the problem but blocking me up even further. Then I’d need to take medication to stop me being  blocked up and eventually you were going round in a vicious cycle.

I learned to control and limit my flare ups by changing my diet and not doing too much physical work. Both of those things were and still are the biggest factors in my life.

My most recent pain.

That brings me into my most recent issues and pain. The pain all began in May 2017 and is still ongoing. I was driving home from work one day and almost instantly, completely out of the blue, I couldn’t breath. I called home struggling to speak and called NHS 24. Thankfully I was only minutes from home so I did get home but was soon taken by ambulance into hospital. From that day I’ve been in constant pain. I wake up in pain and I get sharp shooting pains around my chest and ribs. I also get spasms in my oesophagus and a very strange sharp hiccup thing that is much stronger than a normal hiccup that causes a clamping pain on my oesophagus.

Nobody has been able to come with a reason or diagnosis for my current pain. I’ve been admitted to hospital for weeks on end. Had countless tests; an endoscopy, barium swallow, ultrasound and a CT scan. All of which came back inconclusive with no obvious signs of anything wrong. I’ve been on the strongest medication for pain. Lost over 2 stone in weight, put on a puree diet and given ensure drinks to supplement my diet. Nothing helped.

As a last resort I was offered more exploratory surgery to have a look at the previous surgery I’d had. That was done on the 7th September where my surgeon didn’t find anything obvious that might be causing the pain. He made a professional call and decided to undo my previous fundoplication wrap back to its normal position. I’m currently 3 weeks post operation and I’m still in the exact same pain as I was before the surgery.

What’s next for me?

As it was only exploratory surgery I knew there was never any guarantees that it was going to fix me so I can’t be too despondent. I just wish I could get a diagnosis or even just some answers would do.

I’m still in constant debilitating pain since the surgery. Everything is exactly the same, it honestly feels like I’ve never had surgery. Thankfully after having the wrap undone I’m not getting a recurrence of the reflux and sickness that I had in 2011. I don’t think I’d be able to cope with reflux and sickness on top of all my other pain. Six months of debilitating pain added to my years of pain before really has taken out of me. I try to stay positive but there is only so much I can take.

My hand in the hospital bed straight after surgery. With a cannula in and my wife's hand resting gently on top.
In sickness and in health

I’m back into see my surgeon for a follow-up in a few weeks. From there who knows what will happen. My guess is more tests and hopefully some answers. I’ll keep you all posted.

Thanks for reading.

This real life Dad xx

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Tammymum

25 Comments

  1. amybeingmum

    September 26, 2017 at 2:41 pm

    Thanks for that update mikey!! Xx

    1. Thisreallifedad

      September 26, 2017 at 2:49 pm

      No problem. Xx

  2. mamagrace

    September 26, 2017 at 4:47 pm

    Wow, this is tough. I hope they find a way to remedy your pain and everything else. #DreamTeam

    1. Thisreallifedad

      September 26, 2017 at 4:51 pm

      I hope so too. X

  3. modernmum82

    September 26, 2017 at 8:29 pm

    I have been following your story but had no idea what your surgery was for. This sounds horrendous. I hope you get answers and pain relief soon.
    Im sure you already have but have you considered some natural therapies? Reflexology, acupuncture, etc? X

    1. Thisreallifedad

      September 26, 2017 at 7:36 pm

      Hope it’s a bit clearer what I had done now. Thank you for following my story. We were looking into acupuncture just the other day actually. Think I’ll give it a go, money is an issue now with being off so long but think I’ve got to give it a try.

  4. justsayingmum

    September 27, 2017 at 8:33 am

    Oh goodness I am so sorry to read your story. Such a battle you’ve had and frustratingly so too with the unexplained causes. That must be the hardest along with the constant pain. It seems like you have a wonderful family around you – that must help. I do wish you all the best with your health and hope to read one day that you are fighting fit again #FamilyFun

  5. Alana - Burnished Chaos

    September 29, 2017 at 5:14 pm

    I’ve had a few surgeries myself where they never found the cause of all my pain and words can’t describe that feeling when you come round and the doctor says they didn’t find anything. Obviously you’re glad to hear there’s nothing majorly wrong but you’re also devastated that you still have no answers. I really hope they find the cause and help alleviate the pain you’re in.
    #FamilyFunLinky

  6. tammymum

    October 1, 2017 at 7:39 pm

    Oh I am so sorry it sounds truly horrendous and inhibiting. I really really hope a diagnosis can be found for you and you can spend your days with your family pain free. Thanks for joining us at #familyfun x

  7. Rhyming with Wine

    October 2, 2017 at 6:26 pm

    Goodness me I can only imagine how frustrating and debilitating this must be and how desperate you must feel just to get a diagnosis and some answers. I have everything crossed that you find a way through this and get to put it all behind you very soon. Thanks for sharing your story with #DreamTeam x

  8. Brandy

    October 3, 2017 at 6:08 pm

    Have you heard of Dr. Aviv in New York? He’s a major expert in GERD issues and very successful in treating people… Might warrant a trip/visit?

    1. Thisreallifedad

      October 3, 2017 at 5:11 pm

      Never heard of him. Would be a hell of a trip from Scotland to USA. I’ll Google him and do some research.

  9. Kursed

    October 3, 2017 at 9:52 pm

    I hope they get to the bottom of it soon so that you can start getting on with your life much more comfortably! Some times not knowing is the worst bit, it’s so frustrating ❤

    1. Thisreallifedad

      October 3, 2017 at 8:54 pm

      Thank you. It is definitely harder not knowing. I wish I could get some answers.

      1. Kursed

        October 8, 2017 at 12:17 pm

        After reading this post I felt inspired and chose you as my Blogger Of The Week – http://www.kirstythroughthelookingglass.com/follow-friday-06102017 – keep doing what you’re doing!

        1. Thisreallifedad

          October 8, 2017 at 12:21 pm

          Wow. I’m honestly so happy and grateful you choose my blog. My aim is to help others and raise awareness so it means the world to be chosen. Thank you x

  10. John Adams

    October 4, 2017 at 1:09 pm

    What a brutally honest post. Thanks for sharing your story. I hope the causes of your current pain are discovered and can be treated.

  11. theshadeofwriting

    October 4, 2017 at 11:59 pm

    Is GORD similar to GERD? I was diagnosed with hiatal hernia and gerd at 19. I was willowy 95 lbs back then and my stomach and chest in massive pain. I still get pains…. I hope your surgery goes well and they find what’s going on.

    1. Thisreallifedad

      October 4, 2017 at 11:05 pm

      Sorry to hear you are still in pain too. GORD is GERD. Just UK vs USA spelling that’s all. I had my surgery a month ago and unfortunately it hasn’t helped. Back to see my surgeon again on Friday. Hopefully he can suggest a new plan of action.

  12. angelanoelauthor

    October 5, 2017 at 2:50 pm

    I hate to read that anyone is in pain, and this sounds worse than most. Your family pictures though, with you children and wife, show a man much loved. Though I know physical pain sucks the big one–as we say in America–I’m happy to see so much love all around you.

  13. B.D.

    October 15, 2017 at 9:57 pm

    Thank you for sharing your story. I am sorry you have had so much pain in your life. It sounds like your vagus nerve might have been affected right from that first incident, and perhaps exacerbated by subsequent interventions. There are vagus nerve pacemakers (rather invasive), but there are also gentle stretches and poses you might want to try that are quite effective right from the beginning, and increasingly over time.

    1. Thisreallifedad

      October 15, 2017 at 10:09 pm

      You have no idea how often I’ve heard this, yet when I mentioned this to my surgeon he said I can’t have damaged it because it would only be damaged during surgery and my symptoms don’t match. Is there any way to correctly detect and diagnose this?

  14. B.D.

    October 15, 2017 at 10:29 pm

    This is the thread that helped me make the connection btwn the vagus nerve and my hiatal hernia: https://patient.info/forums/discuss/living-with-hiatus-hernia-and-vagus-nerve-problems-for-30-years-414923

  15. B.D.

    October 15, 2017 at 10:36 pm

    Trust me, I know. They never believe us, but the proof is in the pudding! If you felt pain during that first incident, a nerve was injured plain and simple – otherwise, how did the pain get registered? And both chiropractors and osteopaths will tell you that displacing the sternum or ribs can have a direct effect on the thoracic nerves. There are YouTube videos that show how to gently push the stomach back down through the diaphragm to where it’s supposed to be – the relief I got when I did that was phenomenal. “stomping” also helped: standing tiptoe and letting my weight down full force onto my heels. My doctors’ (plural) reaction? “That’s interesting” Interesting? How ’bout it improved my quality if life by leaps and bounds?! Don’t give up!! There is a solution for you somewhere 💗

    1. Thisreallifedad

      October 15, 2017 at 11:03 pm

      Thank you. I won’t give up. I’m down in London this week to see a specialist for private testing. Fingers crossed for some answers.

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