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:
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
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.
References:
https://www.convatec.com/ostomy/living-with-an-ostomy/nutritional-advice-and-diet-tips/hydration/
Convatec have some great information on keeping hydrated and you can find even more if you sign up to their me+ scheme.
http://www.stomawise.co.uk/diet/dehydration
This Stomawise page has some handy tips on foods that will help increase your sodium and potassium levels should you become dehydrated
I like what you recommend about simply having a drink when you eat. It makes sense that this can be helpful both to stay hydrated and to help the food move the body faster, particularly with an ostomy. This could be helpful to talk to my wife about because along with the various products and medicine she needs, these small changes could really make a difference for her.
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I hope some of the tips will be useful!
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Thanks a million. Fantastic advice, as when I get thirsty I slug down salted water, Himalayan salt, in stood of sipping and output too watery plus little and often is better, I have a high output fistula, so can dehydrated very quickly. Your a star
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Thankyou Bernadette, that’s so lovely of you. Glad you enjoyed the post and found it useful xx
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This really helped me re-evaluate my fluid intake with an ostomy. Im now religiously monitor my fluid intake and now drinking 2.7 litres a day. I have found this post extremely helpful xx
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Me too, the research I did for this post really bought to my attention some great tips and also how many ostomates aren’t given much information at all! And if they are it can be very wrong and do more harm than good! X
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This is such an informative post Nat! #sundayshareup
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Thanks honey!
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Hydration is so important! I find it helps to take small amounts throughout the day, and St Mark’s Solution is great when needed – if you use it regularly you can get the ingredients on prescription. #sundayshareup
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Thankyou Richard! Yes it really is so important and I’ve come across so many ostomates who have never been advised about it properly!
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The spooniemummy, thanks for your reply, I’m Bernadette with the fistula, just discovered your site this morning and what a find. I’m already putting the hydration advice into practice, Bernadette
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That’s brilliant to hear, I hope it is helping x
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A powerful share, I simply given this onto a colleague who was doing somewhat evaluation on this. And he the truth is bought me breakfast as a result of I discovered it for him.. smile. So let me reword that: Thnx for the treat! But yeah Thnkx for spending the time to discuss this, I feel strongly about it and love reading extra on this topic. If attainable, as you grow to be experience, would you thoughts updating your weblog with more particulars? It is extremely useful for me. Huge thumb up for this blog publish!
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Hi, I have a friend who is struggling to hydrate and your article has given me some great advice to give her. I have copied out the St. Marks Solution recipe and on the same sheet have included some tips on keeping hydrated. Many thanks indeed. X
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Thats fantastic to hear, thank you so much for sharing the info with her. Any more questions please feel free to get in touch x
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Thanks for saying I can ask more info. Have you any tips on how to keep a stoma securely attached as my friend, as well as being dehydrated does have problems with that (3 in one day once). She is getting really upset about this. x
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Has she ever tried using a different bag? You can also get baseplate extenders, i would recommend the Brava Elastic Tape Extenders on the Coloplast site which fit around the baseplate to give extra security. Also making sure the skin is completely dry before putting a new bag on is important x
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Thank you so much no one told me i found out the hard way hospital visit. Just wanted to share one of the post new at this.I am having hard time finding something that I dont leak had 4 major surgeries to stomach area and my right side is a mess, but I am learning a little. One is I wash then use a hairdryer on low and never directly on stoma but realized everthing needs cleaned and REALLY dry. Also can laugh I went to dollar store and bought blue painters tape I use it all the time, doesnt hurt my skin and really holds well was so suprized 1 dollar so thankful went back and bought 5 rolls really works for me.May not work for everyone but wanted to put it out there if you were as desperate as I was,. So 2 things the tape and hairdryer to dry it really well before putting anything on. Hope it helps someone.
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Thanks for the tips, hope you are not having as many leaks now, they can be exhausting! Hydration is also something I wasn’t told about and had to learn about myself, it is so so important though!
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