Hi, I am very new here. I am from the UK. I had emergency surgery as I had a blood clot in my small bowel. And currently, I have an ileostomy bag (temporary), but my, do I struggle with keeping the output down and keeping hydrated.
Hoping to make some new friends here 💞😊🤞 x
Welcome to the group.
How many times a day are you emptying your bag? How long has it been since surgery, as output is usually more loose for a time afterward until you get back to eating a normal diet? Has your consultant or stoma nurse advised on any medications to slow the output down?
Avoid drinking too much plain water; add some orange squash or something similar to it, and maybe drink Dioralyte (Boots makes their version of it, which is slightly cheaper) or make your own St Marks or Oxford solution.
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Six weeks post-op. I am on Dioralyte and Loperimide, maximum dose. I seem to need a drip every few days of sodium as levels drop. I'm still trying to adjust to life this way. Found this group online today 🙂
I am emptying approximately 1,000 ml a day.
Hello Nikkiflower,
You've come to the right place. Everyone on the website has an ostomy, or had one. Lots of experienced advice. Any question is welcome. And it can be anything... For example: choosing a wafer & bag, choosing a medical supplier, leaks, peristomal hernia, relationships, skin issues, showering, bathing, swimming, traveling, humor, food, and sexual worries.
It's all good. And someone here will have an answer.
An ileo has lots of liquid-type output, that will damage your peristomal skin (skin around your stoma). The stoma is the bit of intestine sticking out (the red thing). For you, preventing leaks and maintaining healthy peristomal skin is the main concern. The first place to go if you run into trouble: Stoma nurse. The hospital where you had surgery should have this type of nurse on staff. All medical manufacturers have stoma nurses you can call and speak with.
It takes time to heal. Don't get discouraged. You will master wafer and bag changes after a month or two.
Hydration: Drink lots of water. But don't chug it. Only medium sips at a time. Drink too much and you pee it out instead of absorbing it. Drink a sports drink like Propel, Gatorade Fit, Gatorlyte... any drink that has electrolytes in it. Watermelon is a great source of electrolytes. You can also buy powder electrolyte that you mix with water. Do not get dehydrated! Five months after my ostomy surgery, I passed out at work, hit my head on a machine, and spent two days in the hospital. My main problem... I chugged water only and drank no electrolyte beverages. Doctors and a dietitian set me straight. I'm sipping a Gatorade Fit as I write this post.
Take care and good luck!
I would have a word with your stoma nurse. You can take other medications along with loperamide so as one is wearing off, the other one starts to kick in. There are injections you can have to slow the output down. They are a bit uncomfortable in your butt, but I always felt the benefit from them when I had a high output stoma. I had them every 10 days.
I didn't know we could have an injection. Yes, I will mention it. Thank you so much.
Welcome to the group. Hang in there. It will get easier with time. I am 6 and a half months out. I remember when I had my original surgery (January 1, 2021) (the 6 months is from my relocation). When I had my original surgery, I was rushed to the hospital 3 or 4 times for kidney failure from dehydration. I had acute kidney injury and now have Stage 2 kidney disease. It is really important to keep drinking but not to overdo it. Drinking too much can lower your sodium levels, but not drinking enough can cause you to be dehydrated. What my ostomy nurse told me is that 4 bottles of fluids (16 oz bottles) a day is a good amount. I have read online that one guide is to drink a glass of water every time you empty your bag. You can make your own electrolyte drink with recipes online, or you can buy sports drinks that have electrolytes in them already. Drinking an electrolyte drink may help with your sodium levels.
Lee
Thank you for your reply. I will get some sports drinks in. Hope you are doing well. I am only six weeks post-op.
They don't like to use the injections unless really needed, as they are very expensive, but it's another option worth asking about. They were a lifesaver for me; without them, I would have had to stay in the hospital.
Hi Nikki, welcome to the group. I've had my ileo for over 30 years and try to use foods to keep my output thicker, such as applesauce and peanut butter on toast. As for low salt, I put some on all my food and especially in water that I sip on all day, along with other fluids like milk, Gatorade that I mix from powder, coffee, tea, and also V-8 tomato juice.
Welcome, Nikki! I'm just over three months post ileostomy surgery experimenting...
For hydration, I've found St. Mark's E-mix (https://www.stmarkshospital.nhs.uk/wp-content/uploads/2021/06/Electrolyte-mix-E-mix.pdf - doesn't taste as bad as it may sound!) useful, or popping an SIS electrolyte tablet into a pint of water (available from Boots, Sainsbury's, or Amazon) works for me. If feeling flush with cash, I use Elete electrolyte drops as they contain other minerals and salts (but a bit pricey). I used to think I had to just drink more water, but St. Marks pointed out I was flushing electrolytes into my output from my body… hence I was often tired and headachy. I try not to drink too much too quickly… sips throughout the day seem to help.
Regarding output thickness, I've been strangely lucky, mostly managing it through diet (e.g., white bread, bananas, marshmallows/jelly babies at first) and now settled as my diet returns to more normal. For some reason, I find fiber (veg) and meat increase my thickness of output too (although cured meat like bacon and gammon firm it up a little too much and give me pancaking!). My mum lived on loperamide, but so far, I don't seem to have needed it. I guess we're all different, and I wonder if my having my colon removed and ileostomy-rectal anastomosis for 20 years pre-stoma formation means my small intestine had already adapted.
Good luck with finding what works for you. This is a great community to learn different things to try from!
Hi Nikki,
Welcome to this new way of life. I had my ileostomy in July, and like you, mine was an emergency one; however, mine is permanent.
I feel what you're going through as, like you, my output was crazy, sometimes as much as 1800ml a day and very watery.
I now take 3 2mg of loperamide 20 mins before I eat breakfast, lunch, and dinner, and 3 before I go to sleep. For me, this has really worked and reduced the amount and thickened the content up. For me, the St Marks is vile, so I drink plenty of water and have also reduced the amount of tea I drink. Food-wise, I try and have an early dinner, no later than 6:30, and this helps a lot, as I empty my bag around 11 pm and generally don't need to do it again until 5 or 6 am, so I get some sleep.
I know everyone is different, but the above seems to have worked for me😁
Hopefully, yours will settle down soon😁
Dave from Wirral.
Hi Nikki, I'm also in the UK. I had real problems with dehydration in the early days (still do occasionally). I had Loperamide and Dioralyte on script from stoma nurses. GP also wrote me up for codeine 15mg tablets (up to 4). I still use the codeine occasionally but only tend to use loperamide if I'm travelling now.
My best friend is flapjack! These really slow things down for me and thicken output, and while I usually make my own, I find the Graze ones brilliant to keep in my handbag or pocket for a quick energy boost - especially when I'm out kayaking and need to take on fluids (but might not get a chance to empty ileo for 4 hours or more!).
Also the site lets talk IBD on Youtube is very helpfull in addition to this great site.
Do not know what i would have done as caregiver for my husband without Osteomates oh yes I do i would have continued on spinning around getting no where.
Hi .thanks for your added comment. They actually put me on the maximum dose of Loperimide in hospital, and still on them now I'm home. Some days are thick..others are not. Tends to be less thick of an afternoon/evening...weirdly enough ha. I also take 10 dioralyte a day in a litre of water and drink through the day. Wondering how long that is for. Currently my output is 900-1,000
Gatorade Fit is so much better than their other products. It uses stevia, watermelon juice, and sea salt. I cannot tolerate the sweetness of the regular or the chemical taste of the zero. But this is a lite-tasting rehydration drink.
My specialists have me drinking Liquid IV and no Gatorade at all. The Liquid IV is saltier.
As you are in the UK, I can highly recommend these isotonic drinks from Tesco https://www.tesco.com/groceries/en-GB/products/301400821
They cost £1.50 for 4 bottles and both flavors taste lovely!
P.S. The link says they are out of stock, but they are available to order on the Tesco app.