Hey Jo, I also struggle but seem to still get up during the night and seem to crave salty food as well. Try ileo gel thickeners if you can get them; they turn water into a gel form, which is so much easier to handle—no slushy water. The salt thing, maybe we need more electrolytes. I probably need to look after myself a lot more. I'm sure you might get more advice on your nutrition. I'm more on the bad side for that question, but the gel sachets are terrific. This site has them advertised, but I get a different type in Australia. They are worth trying; I would never leave home without a bag of them. xx Mooza xxxxxx. Aust. Hope things do get better for you, matey. xx My moods can change still after many operations after many years. xxxxxxxxxxxxxxxxx
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Jo, I'm still pretty new to the whole ileostomy thing too, so I don't really have any great tricks for you on the whole bag thing, but I can relate to craving salt. It's totally funny since I used to have a sweet tooth. I'm not really sure why the change. The only advice I can give for the bag is to eat a light dinner, eat it a little earlier in the evening, and of course, empty right before bed. Sorry I'm not more helpful. Hope you continue to feel better. ~Jae~
I also had an ileostomy nearly and have had nothing but trouble since. I have found the Morphorm gel thickeners helpful, also not eating late in the evening. The only other thing is a couple of codeine before bed to slow down the output. Hope you feel better soon, Gary.
Welcome Jo, it took me a couple of times setting the bed to get a pattern going. You will find a system. As for the salt, they tell me it is good for us ileostomates. And remember, we are all in this together. Take care.
I have had my ileostomy for a little over a year. I get up at night. I did purchase a product that you lay on—it lifts your head up and also your legs, a wedge for your head and legs. You have to lay on your back. I have noticed it has cut my trips to the bathroom down to once a night instead of every hour. Before, when I laid on my side, I noticed more output and the whole unit would burst—so for sure I got no sleep and spent time cleaning up. Also, I take a morphine pill, a small dosage, and the side effect is constipation, so that helps at night too. I try to keep the flow solid and make sure when the stoma decides to empty, I am near a bathroom because if I just let it empty, the bag fills up fast and then the unit pops, and we all know how fast we have to get a new unit on. Good luck, Butterfly48.
My trick is I don't eat large meals but small ones throughout the day and nothing after 7:30 at night, giving time for dinner to make its way out. Marshmallows are also a good thickener and yummy too...
The salt is all good as Ileos need more salt. As far as night emptying, in time you will master when and how much output you have. Also, do not eat after 8:00 and empty right before you go to bed. That should help. Welcome, and it will only get better. Michael
If you can get some GelX capsules, they help. Also, a bit of baking soda in a pouch helps as well.
Thank you for the helpful tips, but how should I intake salt? I have started eating salty crisps, which I don't normally eat before the operation. My dinner time is generally between 6 and 7 PM, but the output is still active during the night. How long does it take to form a pattern? Am I still in the early stage for it? Thanks, Jo
Marshmallows and jelly babies are great thickeners :) I have had an ileo for over 2 years and I still have to get up some nights; sometimes it's once in the early hours. I try to avoid using codeine unless I have to, as you say it's early days for you and you will find what makes it more active and what doesn't. I was told if my ileo was really liquid and active to have a packet of potato chips (crisps) and a can of Coke to balance out my electrolytes.
Jo- I have had my ileo for 51 years and in the beginning, (I was 8 when I had my first surgery), I had to empty every hour and nighttime was a struggle... leaks from poor-fitting appliances mostly. But after a time, (it is different for everyone) my body adjusted and I now get up once a night, usually around 4 am, and am only up for about 3 to 4 minutes. Just long enough to empty. I have been doing this for many years and it is no different for me than if I didn't have any ostomy. As for craving salt—that has always been an issue with me. I eat lots of salty things because I lose lots of fluid through my stoma... and salt encourages my body to absorb some of it before it goes out the stoma. For you, though, you may be dehydrated because your body has been through a shock from the surgery. I wouldn't worry too much about it though... your body is just telling you what it needs. Remember that worry and stress are the enemies of a well-functioning ostomy... give yourself time and things will even out. After your system calms down you will find that your ostomy will be most active the first hour or two after you eat... depending on how much you take in. That will make it easier to sort of control how much output you have at night. Good luck with your recovery... just give yourself time and everything will be fine.
Clippergirl-How brave you are to cope with it since the age of 8; it must have been difficult during your teenage years... I was not only shocked but also really distressed and depressed after finding my other organs also being removed during unexpected bowel surgery. It is very difficult to cope with physical as well as emotional trauma alone here in a foreign country. As a vegetarian, it seems a little more difficult to choose what to eat.
Primeboy-I am getting out of grieving now; yes, things have gotten a little more manageable. However, having no family in this country to support or turn to is far more difficult.
StarUK-Very interesting, but I don't drink Coke, and I am not sure Coke is good for ileo.
Jo, maybe you need some family as well. Now, where do you come from originally? Also, I know you're a veggie—sorry, Australian breaking down words here, lol. I used to drink cola. I also drink beer, wine, etc., fizzy, non-fizzy—you name it, I have it. Popcorn as well, had it the other day. Oh, and great salads, yummy, hahaha. Yes, had problems in the past, but I can deal with that, and I chew. Marshmallows do help. Ileo satchels, yes, I am pushing those big time. Wonderful, you're in the UK? Free? Get them, please. XX MOOZA XX
Jo--I'm with Mooza--I drink and eat anything I want now, but it took time to reintroduce foods that are difficult to digest. For me, that is because after so many surgeries, I have no large bowel left. Since you are a vegetarian, you may have to find ways to prepare your food so it is easier for your digestion to process. Veggies are notoriously hard to digest. I'm sorry that you are alone there in the UK, but you have lots of friends here who are willing and eager to listen and give support when needed, and we will definitely understand where you are coming from. So don't feel like you are ever alone; we are always here for each other.
