My story

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May 2014 and life was pretty sweet for me. I had recently completed my DPhil (PhD) at the University of Oxford. Having worked for many years in London as a Parliamentary speech-writer, research assistant and project manager, I was a month into a new job in corporate fundraising for Oxford University. I went on a sun soaked mini break in Portugal and on my return became unwell with a tummy bug.

I knew instantly that this was not an ordinary virus: I was in an extraordinary amount of pain (my abdomen was very swollen and distended and my torso felt as if it was being burnt). This subsided after 4 days but I was left with very specific severe pain under by ribcage and above my stomach and I had constant acid reflux. What followed was a 9 month journey to get a diagnosis for post-viral gastroparesis.

I was put on a lot of medication: none was particularly effective at controlling the symptoms or managing the pain. Some of the medication gave me nasty side effects and one particular drug, which I was prescribed, actually slows down gastric emptying and was therefore increasing my symptoms without the doctors realising it at the time. I was sent for numerous tests: a gall-bladder scan, an endoscopy, an MRI scan, and a gastric emptying scan which finally confirmed the diagnosis of gastroparesis.

During the months before the diagnosis, the medical profession clearly struggled to provide an explanation for my symptoms. I was told that I needed my gallbladder removing, that I might have a stomach ulcer or stomach cancer, that I had a possible tropical virus, that my symptoms were psychosomatic, that I had asthma (despite me having no history of this!) It really did feel as if the doctors were clutching at straws. All the time, the pain was constant and worsening and I was suffering from mild and intermittent nausea. I was permanently exhausted: falling asleep during the day. I was also losing weight rapidly, because I could not eat much, and, as I have always been slight, this was worrying: since I contracted the virus, I have lost nearly 1.5 stone. My concern was increasing and, without realising at first, I started experiencing anxiety.

Gastroparesis had been suggested by one doctor as a possible cause but I needed to wait for a gastric emptying scan to confirm this. I found myself constantly searching for a cure or solution. Most medical websites had very little practical information on gastroparesis. Most of the other websites, blogs and message boards contained very negative messages. Shortly before Christmas, after experiencing constant shortness of breath for 3 weeks, I found myself unable to get on the bus home after work, crying at the bus-stop. My mum collected me and took me to the hospital. But things were shutting down for Christmas. The specialist I had previously seen was on holiday and I needed to wait for the gastric emptying scan to get the diagnosis of gastroparesis confirmed. I was sent home and signed off work.

The next two weeks were the worst of my life: so bad that I really could not at that time see the point in living. I have always been an articulate person used to challenging ‘official’ information and have always been encouraged to ask questions but I was simply worn down and could see no way out of what was a continuous nightmare. My family, particularly my Mum, was desperately worried as were my friends and colleagues. I became completely withdrawn and isolated: I was trapped by my illness.

At the beginning of January 2015, I had a gastric emptying scan which confirmed the diagnosis of gastroparesis. But this was just the beginning of my journey. There is no magic pill or effective medical solution that will make my symptoms go away. Gastroparesis is a challenging condition and not much is known about it. My specialist is hopeful (because a virus caused it) that my symptoms will improve over time but they may not and may get worse. It is a life-changing condition and facing the unknown is for me the hardest part. I think because I’d had time off work, had received a definite diagnosis (which I didn’t yet fully understand) and took a bit of time to pause and think, I was able to make the vital decision to try and get back some control at the start of the new year.

I spoke frankly to my GP about all of my concerns and he, I think was relieved, that I had echoed some of his concerns. He thought I did not have asthma and should not be on a steroid inhaler. He thought that I should not have my gallbladder removed as my symptoms were not consistent with gallstones/gallbladder malfunction so I cancelled the imminent gallbladder operation. He also thought that I should see a cognitive behavioural therapist to help me come to terms with my diagnosis. He admitted that he did not know anything about gastroparesis but would support me as far as he was able. He also added that he thought I should return to work if possible.

Within two months (yes, two months!), things started to noticeably improve for me as I took back control of my life. The CBT specialist was excellent and I saw her once a week for the next six months. I realised that focussing on just one element of my life (diet or medication) was not going to enable me to manage the condition effectively. Gastroparesis forced me to assess pretty much all aspects of my life. I slowly developed a plan that lets me effectively manage my symptoms most days and build a life that I enjoy living and want to live. My journey towards recovery includes:

  • Seeing my CBT therapist every 3-4 months for a review to make sure that I am focussing on my goals and staying on the path to recovery.
  • Seeing an acupuncturist monthly. My specialist has admitted this helps a lot of patients manage the pain associated with gastroparesis. Although I do not see a significant reduction in pain, I do find it helps take the edge off and my energy levels are always better after a session.
  • Have a 30 minute massage once a month – I find this very relaxing and the masseur massages my stomach too which is soothing. These sessions help me to be in the present moment.
  • I have adopted a new dietary approach to food. A typical gastroparesis diet is low fat and low fibre which means low to no nutrition! Instead, I follow a low-ish fat, low-ish fibre diet but one that puts nutrition first. I have also reduced my gluten, dairy and refined sugar intake. I have come to believe that the underlying dietary principles of diet are more important than focussing on, or eliminating, specific foods although I am careful to avoid indigestible foods. At the moment I cannot eat: seeds, nuts, granola, beans/legumes (except red kidney beans), brown or wild rice, raw vegetables, salad leaves, berries, broccoli, brussel sprouts, coconut, corn, green beans, kale, figs or oranges
  • Walking every day. I am very fortunate to work close to the University parks which are beautiful and now, on most days, I take an hour for lunch and walk.
  • My CBT therapist introduced me to Mindfulness and I was incredibly fortunate that my work helped me to enrol in the Oxford Mindfulness programme last term. I meditate regularly and try to adopt a mindful approach towards life particularly in reactive or stressful situations. I try and live as much as possible in the present.
  • I slowly came off all medications that were not helping me (and in some instances making my symptoms worse). Aside from not experiencing some nasty side effects, my energy levels and digestion have noticeably improved. I now only take a prokinetic drug (domperidone) which helps speed up gastric emptying when I am going through a bad flare up and my symptoms are consistently severe.
  • Try and swim at least once a week and do a Tai Chi class once a week.
  • I plan enjoyable social activities on a regular basis and make sure that I am getting a good life-work balance. I only cancel if I am feeling very ill.
  • Pace myself! I still find this hard but I am getting better at this. I was recently head-hunted for a very demanding job but I turned it down (something I would not have done previously) because I know it is not right for me at this moment in time. I have returned to work full-time, and have assumed more responsibility this year, but I work flexible hours when necessary and have Thursday afternoons (when possible) off to do a relaxation class.

I now experience more good days than bad days: I average 2-3 difficult days each week and perhaps a couple of very bad days a month. Not a day goes by when I do not live with gastroparesis: it is always there (even if it’s in the background). However, I am learning not to live in fear of this illness and I am gaining confidence as I find myself managing my symptoms better. I make an effort to create special memories that I can reflect on when I am feeling low. Just over a year after I contracted the stomach virus, I had my 30th birthday and held a party for close friends and family to celebrate. Without these people, and their support, particularly my Mum and my current boss at work, I would not have been able to rebuild my life.