Early stage struggle

Hi there,



I just had my Ileostomy on 8th June, was feeling very depressed, isolated and distressed,tearful all the time, am gettin out of grieve and have just started getting my appetite back couple of weeks ago. Is anyone also struggling with getting up during the night to empty bag? Any tips to prevent break my sleep? Does everyone also craving salty things like I do?



Thanks,



Jo

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 thickners if youu can get them turns water into a gel form soooo much easier to handle no slushy water the salt thing maybe we need more electrolytes i prob need to look after myself a lot more ,im sure you might get more advise on your nutrition im more on the bad side for that question but the gel satchets are terrific this site have them advertised but i get a different type in australia they are worth trying i would never leave home with out 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

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 the craving salt. Totally funny since I use to have a sweet tooth. Not really sure why the change. The only advice I can give for the bag is 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 ileosomy nearly and have had nothing but trouble since, i have found the morform gel thickners helpful also not eating late in the evening. The only other thing is a couple of codine before bed slow down the output.Hope u feel better soon Gary

Welcome Jo,It took me a couple of times s$%ting 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

Living with Your Ostomy | Hollister

I have had my ileostomy for a little over a year. I to get up at night. I did purchase a product that you lay on - lifts head up and also my 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 for clean up. also I take morphine pill small dosage and the side effect is constipation so that helps atnight 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 through the day and nothing after 7:30 at night, give time for dinner to make it's 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 800. 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 pouch helps also

Thank you for helpful tips, but how to intake salt? I became eating salty crisps which I don't normally eat before op.My dinner time generally between 6 and 7pm, but the output still active during the night. How long does it takes to form a pattern? Am I still in early stage for it? Thanks, Jo

Marshmellows and jelly babies are great thickeners :) I have had an illeo for over 2 years and i still have to get up some nights sometimes its once in the early hours. i try to avoid using codiene unless i have to, as you say its early days for you and you will find what makes it more active and what doesnt. I was told if my illeo was really liquid and active to have a packet of potato chips (crisps) and a can of coke to balance out my electrolites.

Here are a few simple thoughts. Don't struggle with getting up at night. Just get up and empty the bag so you can go right back to sleep without worry. I am used to getting up about once a night now and I have accepted that as part of life. I would be foolish to try to fall back asleep with a reasonably full bag. My nerves wouldn't let me. On another note, there are all sorts of meds to help you with diarrhea: some mild and some very powerful. I take immodium along with DTO (distilled tuncture of opium) which did the trick, but I am now dependent on it...unfortunately. Your MD will help you find what's right for you. It's now almost 3 months since your operation, so kiss your grieving goodbye and start enjoying life again. Maybe you'll be craving chocolate soon. Good luck!

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 night times were 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 4am, and am only up for about 3 to 4 minutes. Just long enough to empty. I have been doing this for many 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 to 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 age of 8, it must have been difficult during your teenage... I was not only shocked but also really distressed and depressed after found my other organs also being removed during bowel surgery unexpected,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 has getting a little more manageable, however being 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 your a vege/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 otherday Oh and great salads yummy hahahah yes had probs in the past but i can deal with that and i chew . Marshmellows do help ileo satchels yes i am pushing those big time WONDERFUL your in the UK? FREEE? GET THEM PLEASE XX MOOZA XX

Jo--I'm with Mooza--I drink and eat anything I want now but it took time to re-introduce 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 vegeterian 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 that 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.