Please note – I am not a medical professional and this is written based on my experiences, information I have been told and things I have researched. If you are having issues with staying hydrated or an overly active and watery output, please contact your stoma nurse or a doctor.
As the subject of this week’s The IBD & Ostomy Support Show is hydration, I thought I would share my experience of becoming dehydrated with an ileostomy and some (hopefully useful) information for you all.
When you have an ileostomy, you can become dehydrated much quicker than someone without one, or those with a colostomy for example. This is because your large bowel is responsible for absorbing most of the fluids your body needs. When you have an ileostomy your large bowel is no longer connected or may have been removed completely.
Symptoms of dehydration include:
- Lack of concentration
- Dark urine/decreased urine output
- Increased thirst
- Dry mouth
- Dry skin
- Shortness of breath
- Stomach cramps
- Electrolyte imbalance
An electrolyte imbalance due to dehydration often presents as low sodium or low potassium. This can cause symptoms such as leg cramps, loss of appetite, drowsiness, tingling in the ends of your fingers, muscle weakness or a gassy, bloated feeling.
I am not the best at keeping hydrated and never have been, even before my surgery. I have been making a concerted effort since getting my ileostomy but I still struggle to get all the fluids I need in a day. The symptoms I notice most from this are dehydrated and dry skin, as well as headaches. About three or four weeks ago I was suffering from a terrible migraine that floored me for a couple of days. It was so bad it made me sick and I couldn’t even keep the little water I was managing to drink down. As the migraine started to ease, I realised I had become severely dehydrated. I had a different type of headache from the migraine, a dry mouth and a decreased urine output, only going a little every twelve hours. I could barely function and I struggled to get out of bed. When I managed to get downstairs to the kitchen, I noticed that the ends of my fingers were tingling and painful and knew my sodium was low. I had been warned about this symptom by my stoma nurse a while ago and this was the first time I had experienced it and it wasn’t nice.
Luckily my boyfriend was there to help me out and my Aunty came and took the boys to school for me. Ste then made me a jug full of St Marks Solution and poured me a glass full with some juice mixed in to make it more palatable. I had stopped being sick and felt less nauseous and although it wasn’t nice, I knew I had to drink it. I do think I should have gone into hospital at this point to get IV fluids but I did not want to be admitted again (stubborn as I am) and luckily managed to recover at home in about three days. My advice to anyone with the same symptoms as I was getting would be to go and get checked out, it really is not worth the risk of getting worse or causing further damage to your kidneys for example.
So what is recommended to keep hydrated when you have an ileostomy? The following list has some hints and tips I hope you will find helpful
- THE RECOMMENDED FLUID INTAKE FOR AN ILEOSTOMATE IS 2.7L A DAY. This obviously is an average and everyone is different but this is a good figure to aim for. It is also important to remember that if the weather is hot or you are doing exercise, this will need to be increased.
- THE FLUIDS YOU DRINK SHOULD BE MIXED. By this, I do not mean always have your gin with a tonic! Drinking solely water all day is not ideal for an ileostomate. Water generally flushes straight through your system quickly and little gets absorbed before it exits into your bag. It can cause a high, watery output meaning you actually get dehydrated quicker and it takes the essential electrolytes with it. Milk has been found to be a great source of hydration. Other drinks that you can try include squash, fruit juice, herbal tea, soda, tea and coffee. Decaf tea and coffee is ideal and alcohol should be drank in moderation.
- ALWAYS HAVE A DRINK WHEN YOU EAT. Food will generally move slower through your digestive system so any fluid consumed with it will have more time to be absorbed. The nurses would bring round a warm drink mid morning, mid afternoon and before bedtime while I was in hospital. My stoma nurse encouraged me to always accept the biscuits or cake on offer as a snack to help with this too.
- DRINK LITTLE AND OFTEN AND ALWAYS HAVE A DRINK WITH YOU WHEN YOU GO OUT. Always try and spread your drinks throughout the day and make sure you take a bottle of drink while you are out and about so you can keep hydrated whilst on the move and busy.
- IT IS POSSIBLE TO DRINK TOO MUCH. Too much fluid will also flush the electrolytes through your system and cause electrolyte imbalance. Be careful to get the balance right.
- SPORTS DRINKS AREN’T ALWAYS THE BEST WAY TO GET THE ELECTROLYTES YOU NEED. Many of the ones you can buy easily from supermarkets etc are excessively high in sugar, which prevents proper absorption of other things, can cause weight gain etc., and too low in sodium. It is best to use diarolyte or even better, St Marks Solution, to get the electrolytes you need daily.
One of the best ways to tell if you are well hydrated is to look at the colour of your urine. Light, straw coloured urine is what you should be aiming for. Darker urine indicates that you may be or are becoming dehydrated. Clear urine may indicate that you are drinking too much, and may be flushing out the important electrolytes your body needs.
I hope this is useful and will help you identify signs that you may be becoming dehydrated and that it helps gives you ideas on how to avoid this. Always remember to contact your stoma nurse or GP if you are struggling or have a problem as we are all different and though we can share experiences and advice, this won’t suit everyone with an ileostomy.
Convatec have some great information on keeping hydrated and you can find even more if you sign up to their me+ scheme.
This Stomawise page has some handy tips on foods that will help increase your sodium and potassium levels should you become dehydrated