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Gastroparesis

> Articles > My Story - Health > Gastroparesis

It's hard to convey the challenges Gastroparesis gives me, but I will give it a go. Whilst I do not complain and wish to get on with life, saying 'my stomach doesn't empty in the normal way' doesn't convey the daily challenges it brings.

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Purpose & Disclaimer

Purpose
Page contains my personal story to raise awareness - it does not constitute medical advice. Personal experiences, solutions & medication differ from person to person even with a similar diagnosis. View my story as one of many stories, and if drawing any conclusions, draw from all these stories, not just mine.

I trust the personal information I share will be treated with respect and dignity.

Always consult a medical professional for advice and never make the changes I've made without full medical authority, it may have dire consequences.

Accuracy & Updating
Information contained here may not be correct - I have no medical qualifications, it is my personal story to raise awareness. This page is not updated regularly and may contain out of date information. Verify all facts from alternative up to date authoritative sources.

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Where links are provided to external sites, I am not responsible for the content of these sites.

Imagine...

Imagine filling your sock drawer each day, but then not taking out socks every day? The drawer would fill, then be over full?

Whilst not a great medical analogy, imagine this happening to my stomach. It doesn't empty quickly enough, so must very carefully regulate what goes in - quantity, frequency, texture and ingredients - otherwise I'm in a lot of pain. I'm now at the stage of 7 small mainly soft/liquid small meals a day - eating is purely about nutrition and what food I can digest (which, frankly, isn't much).

I'm rarely hungry (and being means so doesn't help). It is such a fine balance that, despite the best will in the world, it is often 'overfilled' and causes considerable pain in different ways, for hours or days. Little medication touches it.

Can you imagine it? Far fetched or real? Whilst I am not a sick person and am quite used to it, this is my life every day - and increasingly has been for 30+ years. It is just who I am.

I can't resign, retire, have a holiday or escape from it, it is present always 24/7. But managing Gastroparesis is like a part-time job.

Condition is probably caused by my having PoTS. It possibly contributes to my Anemia & Near Neutropenia too.

Management

Management is required to maintain this condition, medication like Cosmocol helps in some ways, but there is no 'medical solution'.

Management is giving my stomach smaller quantities of things that are easier to digest. As the current NHS website states (link at end), 'smaller, more frequent meals ... soft and liquid foods – these are easier to digest'. For me this means primarily:

  • Eating 7 small meals a day
  • Each small meal having very carefully controlled quantities and contents
  • Complete avoidance of food stuffs that aggravate condition - see below.
    Note: In additional Mast Cell means I'm allergic to dairy and other foods such as histamine foods.

Over 30 years, my symptoms have worsened (it wasn't always like this), so I've continually had to adapt. Not managing the condition results in considerable symptoms such as bloating (feeling full quickly even if haven't eaten much), cramps, unable to eat, fatigue (sometimes extreme, like someone has sucked all my energy out) and other food and allergy-related symptoms. These symptoms then need managing - short term diet changes plus the little medication that does help.

You may say 'but everyone gets sore tummies'. True. But this is soreness caused for a different reason, that is for much longer, more frequent and more intense.

Which Foods?

On diagnosis, a low fibre & low-fat diet was recommended, along with half-hour walk after each meal, plus some medication (see below for effectiveness and ability to do exercise and medication). Over time I have amended this further, particularly in presentation.

Avoidance Foods

A carefully controlled elimination diet over 20 years has shown the following foods do not help. Bear in mind my diet is affected by multiple conditions such as PoTS & Mast Cell, not just Gastroparesis. However, I don't know for sure which conditions affect which foods. Therefore I include all foods here, regardless of Gastroparesis influence.

  • No Gluten (including non gluten free oats)
  • No Diary (including no Lactose free)
  • Very limited amounts of Soya
  • Avoid most fruits in solid form * (previously when on solid food diet, apples, pears, anything with berry at end, e.g. raspberry were triggers)
  • Avoid most veg in solid form * (previously when on solid food diet, onions, mushrooms etc. think FODMAP were triggers, although can tolerate a little of some)
  • No histamine foods (strawberries, spinach, tomatoes etc. - can tolerate a little of some though)
  • Reduced sugar
  • Most meats except chicken and fish, unless made into a smoothie
  • No coffee or alcohol

* Soups and fruits smoothies with most non histamine fruit and veg foods are OK.

What I Eat & Presentation

Eating is purely about nutrition and what I can digest. Taste, texture, comfort food is all irrelevant. Discipline is hugely important. Food preparation can take time in both thought and deed.

Food presentation is significant - I digest softer or liquid food better than lumpy/fibrous food. A slow & properly cooked soft jacket potato (eaten without skin) is far better digested than lumpy undercooked chips for example - same food - completely different presentation. Latter would make me quite unwell for several days.

'Main meals' containing veg & meat are partly liquidised into a smoothie (mostly the veg unless it is chicken or fish) as I digest this far better. I just put all my veg, potato (& meat if needed) in our liquidiser, plus hot water, and blitz into a smoothie and eat that.

I make my own homemade breakfast/evening cereal, containing oats, seeds and nuts with rice milk. I soak this for 10 minutes in the rice milk before eating - it is softer, and more easily digested.

Some fruit smoothies from supermarkets are OK - unless they contain 'banned' foods such as high histamine foods, but don't want too much sugar so limited quantities. They help get some nutrients in, without the fibre.

Having struggled with eggs for years, recently found a scrambled egg with plenty of rice milk makes it soft enough to digest - and crucially is protein and vitamins which I need. I struggle with hard boiled eggs, however.

Recently, I've started eating smooth peanut butter (doesn't yet affect Mast Cell) & some Pea and Hemp protein powders. To date, they are all OK, and are good for pumping the nutrients in.

For many years I could tolerate a few dried apricots, 'rough' oat cakes, but now I can't, they cause serious symptoms.

Cooking is a challenge too - I have always done most of it. I usually cook 2 separate meals, one for me, one for rest of family, which all requires planning, and storing. I have a separate kitchen cupboard where I store 'my' food, rest for everyone else. Also means 2 sets of food stored in fridge, 2 separate food boxes when camping, and on it goes.

Quantity and Frequency

Regulating the quantity and frequency of each small meal is important - a lot of self-control is needed.

My oats/nuts/seeds soaked in rice milk form two of my meals. I measure solid ingredients to 4 or 5 spoons in total - any more is too much, leading to cramps etc.

Everything else is either measured on scales (e.g. pasta) or counted in slices etc. This is condition management. One small extra biscuit with a meal can cause all kinds of problems for hours or days, as can 'snacking' outside 7 main meals.

Frequency - eating every 2 or 3 hours works best for me. I eat at aprox. 7:30/8am, 10am 12:30, 3pm, 5pm, 7pm, 9:15pm. I can't, however, 'skip' a meal and make up next time, my body won't process that quantity of food, eating every 2-3 hours is important.

Exercise

On diagnosis, the half-hour walk after every meal might have been useful, but is impractical, especially with 7 and 9 year old children.

The suggestion that exercise helps is still possible, however. Walks can be done - e.g. school drop-offs, stretches etc. can be done at home, as can sorting our house, gardening etc. all helps me.

During the 3rd Lockdown during the COVID pandemic, little exercise was possible due to the weather (it was January 2021), and the amount of school work we all had to do. My Gastroparesis was not so good at this time (but didn't improve after lockdown either really).

Medication

Little medication helps - there is no magic pill either prescribed by doctors or from a health food shop. If you consider why I have Gastroparesis, then it's fairly obvious that 'a little ginger' and the like is of little help.

A prescription of 1 Cosmocol every evening helps to an extent, especially on a softer food diet. With less soft food, 2 Cosmocol are needed every evening. Domperidone used to help - now used occasionally, but with side effects, only very occasionally.

I'm not a sick person though

On the one hand, no one wants Gastroparesis - unlike a job, I can't resign, retire, have a holiday or escape from it, it is present always. At times, managing Gastroparesis is like a part-time job.

On the other hand, I have got used to it over the years and learnt to manage it's changing landscape. Therefore I am not a sick person needing special help. I am a strong, capable person who, just like everyone else, has some differences, and who wants acceptance.

Therefore, I don't complain, I get on with life because there is so much to do, and I have so much to give. Other people have it worse.

Diagnosis

Over 30+ years, symptoms have worsened. It took many years to properly diagnose - 'IBS' was the 'diagnosis' in the meantime, which as perhaps a 'coverall' diagnosis, didn't enable me to manage the condition properly. A proper medical diagnosis allowed better management.

Gastroparesis is most likely caused by my having Postural Tachycardia Syndrome - when diagnosed, other investigations followed, including the Gastroparesis diagnosis.

The diagnosis was at Princess Royal University Hospital, Orpington, by various gastric emptying tests. One test included eating a large amount of dried potato containing a dye, then lying on an X-ray machine (?) for several hours, watching what happens to the food. Various other tests were performed. These showed slow motility in my digestive tract.

Tests were performed whilst following an already strict diet, having had symptoms for years and found a way to manage them. I suspect I would have had a harsher Gastroparesis diagnosis had I been eating the foods as everyone else.

Whilst it is not possible to be sure, my Postural Tachycardia Syndrome may mean my blood vessels don't dilate as other peoples, and this causes slowness in emptying my stomach - but no one knows (and this isn't medical advice!).

Previously I'd had a Colonoscopy which showed nothing untoward, and a Celiac test showed nothing untoward.

Other Comments

Eating mainly soft/liquid and restricted foods 7 times a day currently helps me most. Transition to this has been slow - 30 years ago I ate like everyone else, except restricting rich dairy products like cream.

Supermarket 'Free From' Isle & Sugar

Supermarket 'Free From' Isles doesn't offer me much, apart from gluten-free oats, rice cakes and a few other items, for the following reasons.

Items are sometimes free from one or two items, but not everything I can't tolerate. They may contain dairy, for example, which I can not tolerate.

Some items I can tolerate ingredient-wise I struggle to digest. For example, free from bread - 1 slice is OK per meal, but beyond that is too much.

Items sometimes try replicating non-free from foods - e.g. cakes and biscuits. In focusing on taste and look replication, they leave out the nutritional foods I need and add in too much sugar.

Which leads to sugar. Some say Gastroparesis leads to irregular sugar releases, leading to low and high blood sugar levels. I have no proof if this is true or not, but there are times when I feel as if it does.

Regardless, I aim for low sugar foods - I can't tolerate too much sugar, I also find can lead to too many highs and lows (whatever the cause). I don't need sugar in large quantities, but I do need other nutrients.

Acceptance & Self Control

For me, accepting the condition for what it is helps management of the condition. Easier said than done, but is part of the process. By accepting it, I am more likely to be kinder to myself, and do what helps me.

Self-control is important - it's easy to think 'I'll just have a bit more to eat' but that could cause disastrous results for days to come. Sometimes we have to learn the hard way. Learning to forgive ourselves can be important too, along the way we are going to make mistakes, but taking it out on ourselves, or others, won't solve it.

This implies an element of calmness in our lives too - a challenge sometimes, but something that can help us.

Being Open-Minded

Having an open mind on what can be done, not on what can't, can be helpful. Looking at the lists above and seeing what I can't eat doesn't make a meal. Looking at all the things I can eat, does. Same situation, different view point.

Dehydration

At the time of writing, if my symptoms are worse, I get more dehydrated. With PoTS I have low salt levels and staying hydrated is always something I need to work on. Interestingly, when I moved to a liquidising all fruit and veg, I needed to drink less water as I was staying more hydrated. This is a good thing I think, with my PoTS I was having to drink a fair amount to stay hydrated before.

Comfort Food / Treating Myself

My relationship with food is different to most people. Eating is so restricted and prescribed that I can't eat comfort food, or treat myself (nor do I have any desire to). My options are limited, this just isn't possible. Some might reach for a chocolate for example. But I'd have to look at all the ingredients & think when I last ate/will next eat, and it probably wouldn't work.

Eating Out

Eating out in restaurants etc. is a challenge sometimes - their detailed ingredient documentation is better, but there is little to eat, and often what is offered, is poorly served. I usually either have only one or two choices or ask for plain grilled chicken on a salad.

However, with COVID I haven't eaten out for ages, and with changes in Gastroparesis, leading to a softer food diet, not sure of options now.

Once, in a good restaurant I was served a whole lettuce with a little - and I mean little - diced bacon scatter over it. Another time the pasta was half-cooked - indigestible. Neither was a meal.

Lack of Choice

If you've read this far, you'll see I lack some basic options that others have in my life. I can't choose to get a sausage roll on way home from school drop off because 1) I can't tolerate the ingredients / too much fat 2) probably wrong time of day to eat - I must stick to my 7 meals at regular intervals.

Having said that, I'm very used to it though.

Long term outlook

Blank space here because I don't know. 30 years ago, symptoms were minor, but over years have increased. But symptoms and need for management have varied over 30 years, maybe I'm in a lower point now and may improve, or worsen, only time will tell.

Am well aware of other long term solutions, but these are not relevant for me just now.

Conclusion

Gastroparesis is not a condition that anyone wants. However, I have it, and there is little I can do but get on with it, understand it, and live with it, so I can live my life, as hard as any of that maybe sometimes.

Links

NHS Website, see: www.nhs.uk
PoTS UK had an interesting Blog entry in Jan 2021, see: www.potsuk.org

Tags: gastroparesis food stomach chronic health conditions long term debilitating life altering


See also Introduction | Postural Tachycardia Syndrome (PoTS) | Gastroparesis | Mast Cell Activation Syndrome | Anemia & Near Neutropenia | Muscular Pain | Breathing Pattern Disorder | Look after yourself | Diagnosis | Medication | Vital Statistics & Graphs | Covid-19 | Growing up, Ages 11-18

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