When Even Liquids are a Struggle: Some Advice

Gastroparesis is a condition in which the muscles or nerves of the stomach don't work correctly so the stomach isn't able to empty effectively. Food stays in the stomach for hours longer than it should, causing nausea, bloating, fullness and pain, as well as vomiting.

Because the stomach doesn't empty properly, eating and drinking can be a battle to fight through all the symptoms. Failure to eat or drink enough can cause severe malnutrition and/or dehydration.

One of the easiest things to do when gastroparesis symptoms are severe is to stick to a liquid diet. Liquids empty from the stomach by gravity, so in theory they should cause fewer symptoms than solids. However, even liquids can cause symptoms, so here are a few tips as to how you can maximise nutrition when even liquids are a struggle.

• Maximise your nutrition and hydration - make every morsel count. Now is not the time for diet drinks.
• Take care of your teeth - chew sugar-free gum to hydrate your mouth and don't brush your teeth within 20 minutes of vomiting. Yes, this feels disgusting, but the acid in vomit softens the tooth enamel, and if you brush too soon, you'll remove precious enamel from your teeth. Rinse your mouth with water immediately, and then brush later.
• Take your anti-emetics (anti-sickness drinks) on a regular schedule. If you can keep the nausea and vomiting at bay, you have a better chance of staying hydrated
• If swallowing is a problem, or if you don't absorb tablets/capsules well, speak to your GP or pharmacist about alternative preparations. Many anti-sickness medications are available as tablets that dissolve in the mouth, or even as a patch that can be stuck on the skin. Other medications may be available as liquids or soluble tablets (or other forms), and capsules can sometimes be opened and the tiny beads inside can be swallowed with a spoon of yoghurt or apple sauce.
• Get help for pain, whether it is in your mouth, throat, stomach, or somewhere else. Bonjela (a gel for teething pain or mouth ulcers) is available over the counter. Don't be afraid to speak to your GP or pharmacist about pain, especially if it's stopping you from eating or drinking. 
• Painkillers are better at keeping pain at bay than they are at getting pain under control once it's really established itself. If you've been prescribed painkillers to take regularly, do take them regularly.
• If you've been prescribed NSAIDs (e.g. Aspirin, Ibuprofen, Naproxen, Diclofenac) and find that they are upsetting your stomach, ask your GP or pharmacist if they can recommend an alternative, or if they really are the best medications for you, to prescribe other medication to protect your stomach while you're taking the NSAIDs.
• Be careful of low blood sugars (hypoglycaemia). Symptoms of hypoglycaemia include anxiety, nausea, sweating, hunger, shakiness and weakness. If you find it difficult to spot the symptoms of low blood sugars before they get so low that you collapse in a heap, ask your GP about monitoring your own blood sugars at home, and make sure you get instructions about when you should check your sugars, how low is too low, and what you should do in this situation.
• Taking a supplement of multivitamins/minerals can minimise some of the anxiety associated with not being able to eat. If you know that your micronutrient needs are being met, you can focus on getting hydration and calories. I recommend trying to find supplements in liquid or chewable form, as these are often better tolerated than capsules or tablets. Those designed for children can be more palatable. If you can't tolerate the whole dose, or can't tolerate it every day, don't give up. A little is better than nothing!

So what can you eat/drink?

• Water is great, but if you're barely managing liquids, your body may need more than just water - try clear liquids, e.g. apple juice, cranberry juice, bouillon, sugary cordials. It's also possible to buy fortified juices, such as Fortijuice, which are clear liquids, but are fortified with extra nutrients and calories.
• Dioralyte (or another rehydration solution) is brilliant if you can tolerate it, as it contains electrolytes and sugars to help replenish what you're losing, especially if you're vomiting or if you have diarrhoea.
• Try setting a timer - every 15 minutes drink a teaspoon full of liquid. This seems like a tiny amount, but if you can tolerate it, you'll be getting 20 ml per hour, or 100 ml every five hours. It all adds up. If you can manage that, try increasing the frequency to every 10 minutes, or the volume to 2 tsp (10 ml).
• Carry a bottle of juice around with you and take a sip every time you remember. 
• Using a straw can make it easier to drink quantities, especially if you have a sore mouth.
• Very plain salty crackers, e.g. saltines or water biscuits can help settle the stomach
• Ice lollies (popsicles) are a great way to get those valuable liquids. They are available in minature forms for children, but if even these are too large, try making ice cubes from fruit juice or cordials.
• Ginger is renowned for its anti-nausea properties. A delicious tea can be made from grated ginger, honey and hot water. Strain before drinking.
• Boiled sweets (hard candy) are a good source of sugar. If you can suck these in addition to your liquid diet, they provide calories, flavour and a bit of variety from an entirely liquid diet. 
• Get yourself some dextrose tablets to have on hand in case of low blood sugars - you can suck them or rub them against your gums. If you prefer, you can get sugary gel from your pharmacist that has the same effect (try Hypofit or Dextrogel).

If your fluid intake falls below about 200 ml per day for more than a few days, or you find that you're only able to wee once in every 24 hours (or even less), it's time to stop struggling at home, and get some medical help. Being very dehydrated is bad in lots of ways, but in particular can cause damage to your kidneys. It can also make nausea and vomiting worse. It might be time to get some IV fluids in hospital to top you up until the flare is over. If the flare goes on for a long time, it might be time to consider more long term options, which you can discuss with your doctor.

Because gastroparesis is not very well recognised, there's not a lot of literature available. One author that I can wholeheartedly recommend is Crystal Saltrelli, who is a certified health counsellor in the US. She has gastroparesis, so is writing from personal, as well as professional, experience.

Website: livingwithgastroparesis.com
Books: Living (well!) with Gastroparesis
            Eating for Gastroparesis: Guidelines, Tips & Recipes

I'd love to hear from you about any other websites or books that you recommend, or any tips that you find helpful when eating and drinking are a struggle.

Being a Helpful Patient

There is certain information that your doctors will always need to know. This can be as simple as your name and address and your PCP's details to more detailed information about your past medical history and the medications that you take.

I have a big medical folder of my own records (known as The Big Red Folder). This is split into sections for letters from specialists, test results, relevant publications and articles, diet sheets, exercise sheets from physio, and all sorts of other useful things. Most of the time this folder lives at home with me. It contains the charts that I showed you last week that I use to keep track of my symptoms and the medications that I take.

I am so grateful that I started compiling my medical paperwork in this way, and have learned lessons from other people with complex medical conditions. One of these lessons is to take time every 6-12 months to write to my doctors and request copies of important test results. It can be so helpful to have an MRI report and the scan itself on CD to show a new doctor, rather than having to take my word for what it showed, or waste time for them to request the results from another specialist. I have so many doctors and other health professionals working with me that it can be really hard to keep track of all the tests and all the results. I am the only person who knows about every test and every appointment, so I feel a sense of responsibility to keep good records.

Right at the front of my Big Red Folder is a section of essential information. This is an 'executive summary' that covers all the most important points in my medical history. I have been asked so often by doctors in the ER if they can borrow/photocopy this executive summary that I now carry spare copies in the folder.

So where to start? Well, think back to the last time you were in the ER. You may remember being asked the same questions over and over by the different people that looked after you. There are certain things that your doctors will always need to know.

My executive summary looks like this:

Page 1:

1. My name, address and date of birth
2. Next of kin details (name and contact number)
3. Details of my GP (name, address, telephone)
4. My height and weight (important for some drug calculations)
5. A list of my most important diagnoses - no details, just the name of the diagnosis

Page 2:

Important contact details:

Name, address and contact details for all the specialists that care for me, including my hospital number (patient reference number) for each hospital/clinic. This list includes bleep numbers and email addresses where relevant. For example, it has the bleep number of the Specialist Registrar on-call for asthma at the Royal Brompton Hospital, which is the specialist lung hospital where I'm treated. If I'm admitted to any other hospital, it can be helpful for them to get in touch with one of my specialists as a matter of urgency.


Page 3:

1. List of current medications and allergies

The allergies are in a highlighted box at the top of the page. On the other side of the page is a list of medications that are contraindicated for people with my conditions. Because I have rare and complex conditions, I would rather tell people the basics again and again than risk them make a mistake with my health because they didn't know.

The rest of the page is taken up with a list of my regular and 'as required' medications. For each medication I have given the generic name (unless it's important for absorption or allergy reasons that I take a particular brand), the dose, the route, the frequency and the reason that I take it.

Make sure to include any medications that you buy over the counter, supplements that you take, and your method of contraception, if appropriate.


Page 4:

Past Medical History:

Just a list of dates and important events. For the sake of brevity, I don't include all hospital admissions, just the things that seem most relevant to me - childhood illnesses, major diagnoses, surgeries.

Page 5:

Family History:

Try to restrict this to immediate family (siblings, parents, grandparents) unless there is an inherited condition that can be seen more clearly by including more family members. Even if you don't have inherited diseases in your family, it's worth noting the causes of death of close family members and the incidence of things like diabetes, cancer and heart/lung disease.

Social History:

This is just a bit about you: 

- Do you smoke (how much and for how many years)?

- Do you drink (what, how much, how often)?

- Do you take any illegal drugs? If so, what and how often?

- Do you live in a house/flat/castle? Are there stairs?

- Do you have pets/children/other dependents?

- Who looks after your care needs if you have any?

- Do you work? What do you do, how many hours do you work?

- Are you right or left handed?

That's about it for my executive summary. Of course, it's not rocket science, but it's amazing how things get forgotten in the heat of the moment. Having a printed, legible list to give to anyone treating you can relieve a lot of the pressure of acute illness (for you and your loved ones) and allow you to focus on getting the treatment you need to get better.

More on The Big Red Folder tomorrow!

Organising Medical Supplies: After

It's taken me the best part of a week, but I'm nearly there with the organisation of the medications, and here's how I did it:

One of the two drawers under my bed is now dedicated to medications and testing equipment (oxygen saturation monitor, peak flow meter, blood glucose testing equipment, thermometer, blood pressure monitor). The other drawer will, at some point, contain splints and braces. Crutches and canes are stored in a convenient gap between my wardrobe and the wall.

What I used for the medications:

1. Two canvas drawer liners with compartments (from Ikea)
2. Two clear plastic shallow boxes with dividers and lids (Ikea)
3. One clear plastic deep box with dividers and lid (Ikea)

The drawer is just deep enough to hold the two shallow boxes stacked on top of each other.

This is the bottom of the two boxes:

•  Batteries (for hearing aid, portable nebuliser, TENS machine)
• Tape
• Alcohol hand gel

The top shallow box is full of things that I might need in a hurry - it's so useful to be able to see into it, and know that because it's shallow, nothing important can fall to the bottom and get lost or pass its expiry date:

• Dissolvable anti-emetics (Zofran), mints, chewing gum, ginger candies,antacids
• Diclofenac (Voltarol) gel, Lorazepam, scar gel
• Epi-pen, antihistamines, hydrocortisone, glucose tablets

The deep plastic box is all about blood sugars. It contains my back-up glucose monitor, back-up finger stabber and spare lancets for both types of finger stabber. I love the multicoloured lancets, don't you? I just had to take them out of their cardboard package so that I can see them!

The drawer organisers have different medications in each. Most of my standard daily testing things fit into one compartment, which is useful. I've tried to keep similar medications near to each other, though it hasn't worked perfectly because of the size and shape of the dividers.

So there you have it - a fresh start to keeping my medications in order, which is so appropriate given that I am now trying to manage my chronic illnesses as though they are a full-time job, remember? What better way to start than to have everything in order?!

My next project is to get my medical records in order, including the charts that I've been using to keep track of my symptoms, vital signs and medication use. Oh, and I want to come up with a system to make sure that I know when my medications run out or expire so that I can order new ones at the right time. 

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Organising Medical Supplies: Before

I have had a problem for a while about how to store all my medical stuff.

Searching online, though it did reveal some beautiful and clever ideas, was never going to give me a solution for my particular problem. Most normal people just don't have this much medication! Actually, the problem is not just medication but equipment, braces and splints, mobility aids, etc. 

There are two drawers on casters underneath my side of the bed, which are currently used for the purpose of storing medical stuff. They are about the right size (approximately 2.5 ft x 2 ft each), but as you can see from the photographs, there's not much of a system, and I often have to rummage around to find things. When I'm putting my pharmacy deliveries away, I put things where there's space, rather than with other similar items. Likewise, if things are needed in a hurry, they are taken from the closest packet. That sounds perfectly reasonable until I remember that sometimes these packets get moved while I'm stirring the drawer looking for something else. Which means that another packet gets used the next time. So I have numerous part-used packets of various medications, making it almost impossible to know how much I have in total.

Yes, you're right - this drawer also contains microwave popcorn and knitting yarn

The problems:

• Volume: Up to a month's supply at a time of 19 different regular medications, plus 'as required' medications, equipment, splints and braces and medical records (all currently stored in different places around the house)
• Access: I need to be able to get to everything easily, sometimes in an emergency. If I need a rescue medication in the middle of the night, I need it quickly, and I don't want to have to put the light on or have to move lots of other things to get to what I need.
• Labeling: The system needs to be clear to me (obviously) but also to my husband if he needs to get something for me in a hurry, and to friends/paramedics/nurses/anyone else who might be looking after me.
• Usability: There needs to be some kind of system so that the older things are used first, and so that I can keep track of how much I have, and can request more supplies from my GP *before* stocks run perilously low
• Small things: syringes, bottle adaptors, nebuliser filters, gloves, dressings, etc. These tend to 'float' around the drawer or sink to the bottom, never to be seen again.
• I need to keep a bottle of water, straws, a cup and snacks by the bed (preferably out of sight) so that I can take medication, including things that need to be taken with food, or dissolved in water. The straws are so that I can drink while lying down.
• Non-prescription medications(e.g. Tums/Rennies, vitamins) and non-medical things (e.g. ginger, strong mints, hard candies - for nausea) are not currently stored in the bedroom with the other medications. I think that it might be helpful to have everything in one place. 

I haven't totally sorted out all of those problems yet, but I'm well on the way with it. Look out for the 'after' photographs tomorrow and an explanation of how I'm beginning to bring order to chaos!


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Big Changes Around Our House

Richard and I went to Ikea today. As you probably know, I don't get out of the house much, so this was a big excursion. It was a beautifully sunny day, so I got out the sunglasses (as well as scarf and gloves) and we put the roof down on the car. I was so happy to enjoy the late autumn sunshine with Richard!

Our main aim was to find a cabinet or shelving system to hold the wine glasses that seem to be taking over the house. We have glasses of every conceivable shape and size - for different cocktails, spirits (cognac/armagnac, whisky) and wines - Sherry, Champagne, Chianti, Burgundy, Bordeaux, Sauvignon blanc, dessert wine and port! We were hoping to use the wall space above the sideboard in our dining room, but found something so perfect that we just had to move things to make space for it! The cello now has its own little nook under the stairs and the glass cabinet now lives between the fireplace and the piano (keyboard, really, but I call it a piano - wishful thinking!), where it looks very smart, don't you think?

Don't worry - we don't use the radiator

We also got lots of photograph frames for the photo wall in the study and for the hallway. You'll get to see them once they're filled with pictures and hung on the wall, but not before. I don't want to spoil the surprise for you!

Yes, I said 'study'. We are finally going to turn the laundry/junk room back into a study. Richard is going to get a desk and a filing cabinet, and we are going to reclaim the room. Richard plans to use it as a home office; I plan to use it for crafts. We'll see if those two uses can coexist happily together! 

Most excitingly for me, we got some storage containers to try to organise my medications, which were in quite a state. I haven't had the energy yet to put them to use, but when I do I think it might be worth a post of its own. So many medications, pieces of equipment (nebulisers, a capella, TENS machines), testing stuff (blood pressure, oxygen saturations, temperature, blood sugar, peak flow) and crutches, canes, braces, etc. It's hard to know where to store it all, especially as I need to be able to get to most of it easily.

I've looked online for storage ideas, but I realise that most normal people don't have quite the volume of medication that I have. A small slimline cabinet on the bathroom wall is just not going to cut it!

We've got some clever ideas that I'll show you once I've finished. Or at least once I've started.

Reorganising takes a surprising amount of effort on my part. I can't lift anything much heavier than 1L of milk (that's about 33 oz, for the Americans), so I do most of the planning in my head and then ask for help with the execution. My head is full of wonderful ideas, but it might take a little while to get there. Especially as Richard works long hours and I have a remarkable ability to end up in hospital when we do have time to execute my exciting plans. But I still believe that my plans will become reality one day.

Watch this space!

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

Countdown to Christmas: Part 1

With less than six weeks to go until Christmas now is the time to start preparations.

I'm not suggesting that you play Christmas music on repeat from now until the end of December, or that it's the right time to start wearing those glitterball earrings, or even that you have to pretend to feel festive, but a few moments of planning this week will save much pain in the long run!

For those of us with chronic illnesses, holidays can be difficult. There may be long days of socialising, late nights, lots of travelling and unsuitable food. It may be difficult to find time to rest, take medications on schedule, exercise or meditate. In addition to this, there are the usual stressors of buying and wrapping gifts, sticking to a budget (which may be especially tight for those unable to work due to illness) and preparing to be the Hostess with the Mostest.

Things I am doing this week:

1. Making lots of lists: I have a list of presents that I need to buy for people (this will help me to stick to my budget, as I can look out for things on sale or special offer without panicking that I'm running out of time); a Christmas card list; lists of things that my husband and I would like so that I can tell people who ask for gift idea (we both have allergies, so it's often safer to give people specific suggestions). I also have a list of events so that I can start to think about travel arrangements and make sure that I don't kill myself by agreeing to go to ten parties in one week.

2. Arranging appointments: Now is a good time to deal with any little nagging health problems before the holidays hit. The last thing I want is to allow a small problem to develop into a big problem that could spoil my enjoyment of the holiday. It's also a good time to book a dental check-up and hair styling appointments before the party season starts in earnest.

3. Trying out holiday recipes: There are lots of things that I can't eat, but rather than be a miseryguts about it, I plan to try out some seasonal recipes that will suit my dietary requirements and appeal to everyone else. Crystal at Living (Well!) with Gastroparesis has some great recipes, hints and tips about handling the holidays without causing major symptom flares, and I plan to try some of her recipes this year. I definitely want to give them a trial run before the holidays so that I can avoid the stress of cooking something for the first time, not knowing if I'm going to enjoy it or if my body will tolerate it.

4. I've already bought wrapping paper and cards (I saved a lot of money because I bought them early), so I can start to write Christmas cards and wrap presents as I buy them. I can't write for very long at any one time, so if I write a few cards every day, I won't cause myself lots of pain by trying to write them all at the beginning of December (or lots of guilt that I didn't manage to send them out early enough)! 

I think that's quite enough holiday preparation for this week. There's no point in exhausting myself now while trying to avoid exhausting myself later. Check back next week for more planning and preparation!


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

If Anyone Were Stupid Enough to Televise My Blog

It would be a cross between House MD and Martha Stewart. It would have to be shown weekly rather than daily, as I don't do much in an average day. Let me tell you a little more about my day-to-day life:

In addition to my GP, I see 14 different specialists at six different hospitals. I am currently procrastinating about adding a further seven specialists to my team.

I use 19 different medications daily.

It is rare for me to be able to leave the house more than once or twice a week. These trips are often based around medical appointments, though I do try to include fun things when I'm out, such as buying flowers, visiting the greengrocer, or stopping for coffee. If I'm really lucky, I might make it out to a craft shop, where I could happily spend an hour just looking at things, and stroking the various yarns.

What I can do varies daily, depending on the severity of my usual symptoms, and depending on which joint(s) are least stable/most painful.

I love to make things. It gives me a feeling of great satisfaction to have created something beautiful, whether it's food, a knitted item, or even just some labels for my kitchen. There are days when I feel that I am no use to anyone. Sometimes I can go for days without having a conversation with anyone except my husband. Creating things makes me feel as though I am contributing something, however small, to the world.

When I am not well enough to make things, I like to plan. OK, so I might not actually be able to redecorate the guest bedroom, or reorganise the study, but I can pick out colour suggestions, choose furniture and come up with some pretty neat storage solutions. Thankfully, I have a husband who is happy to help make my ideas reality!

When I am well, I am often able to potter around the house, doing little bits here and there. I like to stay on top of the housework (I'm lucky in that I have lots of help) and like to have systems for everything so that things can run perfectly well without me. This works well, and is necessary for the times that I'm in hospital (about two weeks out of every six). Having systems is not only invaluable at home, but is literally a lifesaver when I'm admitted to hospital in an emergency. I'm not always well enough to give doctors all the information that they need (including numerous severe allergies to foods and medication), so being able to hand over a folder that tells them everything they need to know is such a relief.

Not really TV material, but there you have it - maybe I'll introduce you to some of the systems that I use to make life easier for myself and for my husband as a consolation prize!

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

The Book (and a bit of an explanation)

November is National Blog Post Month.

It is also:
Native American Heritage Month
Pancreatic Cancer Awareness Month
COPD Awareness Month
National Novel Writing Month
Alzheimer's Disease Awareness Month
American Diabetes Month
Lung Cancer Awareness Month
Crohn's and Ulcerative Colitis Awareness Month
National Pomegranate Month
National Homeless Youth Awareness Month
Movember (in aid of prostate cancer research)
and International Drum Month

Most of those are entirely beside the point, but happy November anyway.

My reason for telling you that it's National Blog Post Month is by way of explanation for what is about to happen. Those nice people over at WeGo Health have suggested 30 different health-related blog topics; one for each day of November, and still being a bit of a newby in the blogosphere, I've decided to participate.

The first challenge is to come up with five working titles for an as-yet-unwritten book by yours truly.

1. The Uncertainty Principle:
Living with chronic health problems can be an unpredictable business. Even the very best laid plans can be thwarted at the last minute by pain, fatigue, or other symptoms. A severe flare-up or hospital admission can upset plans for days or weeks at a time. Yet we live in a society that runs according to schedule, which is full of deadlines and appointments, and in which unreliability can be seen as unforgivable. This book is full of real-life examples and practical tips to help people with chronic illnesses and their families balance the varied demands of illness and the outside world.

2. The Chaos Theory:
The world of chronic illness is full of important numbers: blood test results, drug doses, hospital patient ID numbers, telephone numbers for specialists, lung function results. The world of chronic illness is also full of long words, important dates and times, and paperwork. In an emergency, or when illness impairs mental clarity, recalling all these important details can be next to impossible. This book will guide you through the process of creating your own set of detailed medical records for reference, along with a concise emergency file containing the most important medical information.

3. Thank You for Today:
In this fast-paced world it can be easy to forget to notice the people and things around us that are beautiful and special. When every day revolves around symptoms, medication, testing, appointments and all the emotions that go alongside the practical aspects of chronic illness, everything else can fall by the wayside. Taking time for gratitude, and planning pleasurable moments into each day can shift the focus away from the illness and back to the person underneath the illness. It's all about you!

4. Capturing the Moment:
Those of us with chronic illness are probably not going to get better. We are not 'out of the game' for a day or a week, but for months or years. Some of us are going to die before 'our time'. How can we find ways to participate in life as fully as possible, while still making sensible health-related decisions and managing our symptoms to the best of our ability? We may not be able to get outside to see holiday decorations, host a large gathering, or eat special seasonal meals, but that doesn't mean that we shouldn't celebrate. This book brings both ordinary and extraordinary celebrations into the home, and provides ideas and suggestions about recording these memories to create a legacy for loved ones.

5. The Gourmet Guide to the NHS:
The definitive guide to eating in the NHS. All hospitals are given a rating, based on quality, originality and presentation of the food, as well as the seasonality of the ingredients used. Special features, such as wine lists and scenic settings are given special mention. Those hospitals that provide a tasting menu (with or without paired wines) are listed separately. This guide will be indispensable for all those planning to sample NHS hospitality.

What do you think? What would your book be about? What would it be called?

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J