Hi I am very new here. I am from the UK. Had emergency surgery as had a blood clot in small bowel. And currently have an ilyostomy bag (temporary) but my, do I struggle with keeping the output down and keeping hydrated.
Hoping to making some new friends here 💞😊🤞 x
Welcome to the group.
How many times a day are you emptying your bag, how long since surgery as output is usually more loose for a time after until you get back to eating a normal diet, has your Consultant/stoma nurse advised on any meds to slow output down.
Avoid drinking to much plain water add some orange squash or something similar to it and maybe drink dioralyte (Boots make there version of it, it's slighty 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 prob 1,000 ml a day
Hello Nikkiflower,
You've come to the right place. Everyone on the web site 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). Stoma is the bit of intestine sticking out (the red thing). For you, preventing leaks and maintaining healthy peristomal skin is main concern. First place to go if you run into trouble: Stoma nurse. The hospital where you had surgery should have this type 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 2.
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! 5 months after my Ostomy surgery, I passed out at work, hit my head on a machine... and spent 2 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 meds along with loperamide so as 1 is wearing of the other one starts to kick in and there are injections you can have to slow output down there 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 thankyou 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 (Jan 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 over do 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 (16oz 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 sport drinks that have electrolytes in them already. Drinking an electrolyte drink may help with your sodium levels.
Lee
Thankyou for your reply. I will get some sports drinks in. Hope you are doing well. I am only six week post op x
They don't like to use the injections unless really needed to as there very expensive but it's another option worth asking about, they were a life saver for me without them I would had to stay in hospital.
Hi Nikki welcome to the group i,ve had my ilieo. for 30 some years and try to use foods to keep my output thicker, such as applesauce, peanutbutter on toast, as for low salt i put some on all my food and especially in water i sip on all day along with other fluids like milk, gatorade that i mix from powder, coffee, tea, also v-8 tomato juice.
Welcome Nikki! I’m just over three months of ileostomy post surgery experimenting…
For hydration I’ve found st marks 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 a SIS electrolyte tablet into a pint of water (available from boots or Sainsbury’s, or Amazon) works for me. If feeling flush on 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 was often tired and headachey. I try not to drink too much too quickly…sips throughout the day seems to help
output thickness, I’ve been strangely lucky mostly managing it through diet (eg white bread, bananas, marshmallows/jelly babies at first) and now settled as diet returns to more normal. For some reason I find fibre (veg) and meat increases 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 lopermide but so far I don’t seem to have needed it). I guess we’re all different, and wonder if my having 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 11pm and generally don’t need to do it again until 5 or 6am, 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 flavours taste lovely!
P.S. The link says they are out of stock, but they are available to order on the Tesco app x