Elizabeth’s Living WELL Story
There’s a common misconception that gastroparesis cannot or does not get better. The fact is, it can and often does. I’ve received countless emails and messages from people who were diagnosed with gastroparesis, some of whom were VERY sick, whose experience has dramatically improved or even resolved. I’ve decided to share some of these stories — exactly as written, with permission — to illustrate that it IS possible to truly live WELL after a GP diagnosis.
These stories are meant to illustrate the dynamic nature of a gastroparesis diagnosis. They are not meant as medical advice or a template for your own healing. Each person’s journey toward living well and/or getting well is unique. However, having worked with hundreds of people with gastroparesis, there are certainly common themes and practices that you’ll notice again and again.
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Dear Crystal,
I have been meaning to write and let you know what a vital help you and the ‘Living Well with Gastroparesis’ resources have been to me. This week I decided there is no time like the present especially as you will be celebrating Thanksgiving!
I am 30 years old, British and live in Oxford. I have always been blessed with reasonably good health. I completed my doctorate / DPhil in war literature at the University of Oxford in October 2013. Alongside this, I worked as a speech-writer in Parliament in London.
In April 2014, I accepted a job offer to join the fundraising team at Oxford specialising in corporate fundraising for the Faculty of Law. At the end of May, following a short holiday in Portugal, I went down with a stomach bug. I knew instantly that this was no ordinary virus: I was in an extraordinary amount of pain (my torso felt as if it was being burnt) and I had severe acid reflux. This subsided after 4 days and I was left with very specific severe pain under by ribcage and above my stomach and constant acid reflux. What followed was a 9 month journey to get a diagnosis for gastroparesis.
My GP (general practitioner) put me immediately on PPIs: Lanzoprazole, followed by Omneprazole, and then, when neither worked, the dose was doubled. After nearly 8 weeks, with no improvement, I was sent for a gall-bladder scan which showed a very small gall-stone. The specialist and GP did not believe that the gallstone was causing the pain.
All the time, the pain was worsening, I was suffering from mild and intermittent nausea and my concern was increasing. Pain killers, which I was not happy about taking, seemed to have very little effect on the pain. I have always been a ‘healthy’ eater and, believing that improving my diet would help, I started eating more ‘healthily’: granola for breakfast most mornings, nuts, seeds, lots of fruit and vegetables.
Towards the end of July, I also started to experience a continuous shortness of breath. Things culminated when, the evening before my DPhil graduation ceremony at Oxford with the Vice-Chancellor, as friends and family were travelling to Oxford to celebrate with me, I collapsed at my GP’s and he sent me to hospital. I saw 2 specialists that night, had various scans and X-rays, was diagnosed with a possible tropical virus, and referred for further tests and an endoscopy. After being in hospital all night, I somehow struggled through my graduation ceremony the next day as I didn’t want to let my friends and family down.
At the end of August, I had an endoscopy that showed nothing unusual. At this point, I was desperate so I paid privately to see a gastroenterologist in Oxford. He immediately said he thought I had post-viral gastroparesis: apparently he sees on average 2 women in their mid-20s with gastroparesis each week. He said I should go on metoclopromide, that I should become a ‘grazer’, eat soups and lots of soft puddings, and that I would improve after a year.
The metoclopramide had no notable effect. I was permanently exhausted: falling asleep in meetings. At the same time, I found myself constantly searching for a cure or solution. Most medical websites had very little practical information. Most of the other websites, blogs and message boards contained very negative messages. I was increasingly worried about the side-effects of taking metoclopramide and found that I had twitching, tingling and spasms in my fingers, stomach and arms. The pain, however, did start to improve but as it did so my breathing got a lot worse and the acid reflux got worse too.
Shortly before Christmas last year, after 3 weeks of constant short-breath, I found myself unable to get on the bus home after work, and in tears. My mum collected me and took me to the hospital. The specialist I had previously seen was on holiday so I saw his colleague. This new specialist said he could not confirm the diagnosis of gastroparesis, felt that the symptoms were psychosomatic, and thought I should see a clinical psychologist. He thought that my shortness of breath could be attributable to asthma (even though I had no previous history of this) and referred me to a breathing specialist. He also wrote to my GP to tell him that he thought I was over-anxious and that this was possibly due to my Mum who was over-worrying! The specialist also insisted that I be signed off work and could give me no return date.
The breathing specialist who I was referred to sent me for a number of further tests and decided that I should be treated with steroid inhalers for asthma even though none of the tests were showing definite signs of asthma – but no-one could explain the breathing troubles I was having. I was also put on amitriptyline: a tricyclic anti-depressant. A few days before Christmas, I saw the original specialist, who had returned from holiday, and he confirmed his diagnosis of gastroparesis and decided I should be sent for a gastric emptying scan. He said he thought the shortness of breath was due to anxiety about my health and told me to double the dose of amitriptyline. He also said that he thought the gallstone that had shown up 6 months earlier might be causing added problems and recommended that I should have my gallbladder removed as soon as possible.
The next 2 weeks were the worse of my life and 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 could not bare the thought of leaving my bed and was regularly in tears. My GP, who is a very nice man, but is only recently qualified, felt out of his depth and did not want to confront the specialists without following procedure first. He offered to tranquilize me to get me through Christmas. I refused. At the beginning of January, I had a 2-hour gastric emptying scan which confirmed ‘moderate’ gastroparesis.
I think because I’d had a few weeks off work, had received a definite diagnosis (which I didn’t understand) and a bit of time to think, I made the decision to try and get to grips with the situation 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 an inhaler, he thought that I should not have my gallbladder removed as my symptoms were not consistent with gallstones/gallbladder malfunction and he 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.
It was around this time that, thank God, I found your website and bought your 2 books. Your advice was (and is) invaluable: it is positive but realistic and practical. Most importantly, it fits in with busy life-styles and the recipes are easy, are delicious and work. I think you, and your blog, really stand out because you are consistent: you follow through on what you say, you communicate to your readers, you do not make false promises or uninformed/misleading statements and you are not afraid to admit when you’ve changed your thoughts or opinions on something. Against the edited reality that is reflected through a lot of social media, you come across as a real person who knows what this journey is really like.
Within 2 months (yes, 2 months!), things started to noticeably improve for me. The CBT specialist was excellent and I saw her once a week for the next 6 months: she encouraged me to find out about Mindfulness and practice meditation. She encouraged me to follow your advice, where appropriate, because she thought it was uplifting and sensible. She was particularly supportive of your management plan worksheet – which I still use today – and your recent anxiety summit. I also went to an acupuncturist fortnightly – this didn’t help with the stomach pain but did help with my energy levels. I started to notice a pattern with my breathing difficulties: whenever the stomach pain improved, the breathing would get worse. I believe now that it is because I am so fearful of the pain and symptoms returning that my body goes into a state of constant expectation and heightened awareness which, in turn, effects my breathing. I am a person of detail and a perfectionist and this works against me when I think about my health. However, understanding the symptoms really helps me to deal with them effectively.
During the next 6 months, I did the following:
Saw a CBT therapist once a week
Saw an acupuncturist fortnightly
Had a massage once a month
Adopted a new dietary approach to food which followed the principles set out in your book. (I follow a low gluten, low-ish fat, low-ish fibre diet but one that puts nutrition first. I have come to believe that the underlying dietary principles are more important that focussing on, or eliminating, specific food although I am careful to avoid indigestible foods like nuts, seeds etc.)
Walking every day – I’m 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.
Meditate daily and adopt a Mindfulness approach towards life particularly in reactive or stressful situations. I try and live as much as possible in the present.
Came off the amitriptyline and PPIs. My energy levels and digestion noticeably improved. I also switched to domperidone, from metoclopromide, and only take a low dose when I am going through a bad flare up
Try and swim once a week
Plan enjoyable social activities on a regular basis and make sure that I am getting a good life-work balance. I still enjoy eating out in restaurants and with friends.
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.
Returned to work full-time but work flexible hours when necessary and have Thursday afternoons off to do a Tai Chi class
I would not have got to the point where I am without your help and advice: thank you for all the help you give and all to proactive things you do. Raising awareness about this (what I believe is actually a very common but undiagnosed/misdiagnosed) condition is so very important if an effective treatment is to be found in the long-term.
Key to my recovery was also the support I received from my Mum, who has seen me through some very difficult times, and I have also been incredibly lucky to have the support of my work team especially my boss, who has herself faced medical challenges in the past, and is so very flexible. My team nominated me for an excellence award at work this year which I won and also paid for me to do a 6-week Mindfulness course with the Oxford Mindfullness Centre: this was so valuable for me and I now regularly meditate throughout the day.
I apologise for the length of this email. I’m sure a lot of this must be familiar and you must have read many similar stories but I wanted to take the time and write you a sincere note of thanks. Looking at what you have achieved is a constant inspiration but I realise that, like me, you would not have managed this without help and support so I’d like to pass on a special message of thanks to your family.
With gratitude,
Elizabeth