Sleeping with an Ileostomy Bag

So I might be crazy and after everything I’ve been through this last year it is very possible, but I actually don’t mind hospital beds. It might be the fact that the last few hospital stays they make me very comfortable with medication or its the fact that I request about 10 pillows and make myself a little cocoon. If I had the money to purchase a bed that rises up and down for your knees and head I would. So when it was time for me to leave the hospital after each surgery I knew I wouldn’t have an easy time sleeping.

Before the first surgery on my appendix I was always a side and stomach sleeper but after the surgery my stomach was very tender and uncomfortable. They preformed a laparoscopic surgery but also had to cut an incision on my lower stomach right where they would cut you for a c-section. So I knew sleeping on my stomach was not going to be an option until I healed. When I first came home and couldn’t sleep I would try to make myself as comfortable as possible with pillows and would eventually fall asleep. Once the incisions healed every time I attempted to sleep on my stomach I would wake up sweating. Perhaps it was a sign of how active the Crohn’s Disease was but I will never know for sure.

After my second surgery I came home and was so huge with fluids my mom had purchased a pillow to place under my knees in an attempt to drain the fluids my body was retaining. Even after the fluids were out of my system I kept the pillow under  my knees in an attempt to keep myself more comfortable. For a long time when I couldn’t sleep I would go on my phone and read about ileostomies, I was so uncomfortable and paranoid that the bag would leak. I honestly do not know anyone else with an ileostomy but I could imagine that this would be a concern for anyone new with an ileostomy. I had to set an alarm for every 3 hours to wake up in order to empty the bag. For whatever reason my ileostomy has always been more active at night. When I first came home I would eat very early to try to avoid this, even now almost a year later if I can I always eat dinner around 6pm and try not to eat anything after that.

The first time I woke up and my bag had leaked I was mortified. I woke up and I just knew, I turned on the light and couldn’t believe that I had slept in it for as long as I had. I immediately jumped out of bed threw my sheets and everything into the washer and jumped into the shower. Once I had placed a new bag on and put new sheets on my bed I attempted to fall back asleep. You’ll know though if its happened to you its hard to sleep again because you are worried it will happen again. It has happened again but honestly there is nothing you can do about it, you just have to roll with the punches. A lot of times it has to do with what you eat and if it gives you gas and your bag fills up with two much air the wafer will separate from your skin. There have been times that this has just started to happen and i’ve luckily woken before it actually leaks.

In the last 10 months I don’t think I have had a solid nights sleep, in the beginning I could barely function during the day because I could not get into a deep sleep. I finally talked to my primary doctor about this and he prescribed Trazodone, he believed it wasn’t an issue of not being able to sleep but that my mind couldn’t shut off. A lot had happened and my mind was running with concerns and questions about what was happening and I would just stay up all night running situations through my head. The medication is meant to help relax your mind and when I started taking it, it definitely helped me fall asleep faster. After some time though it wasn’t enough and he prescribed me a sleep aid called Restoril. To be honest sometimes it works and sometimes it doesn’t. I’ve learned that I won’t always get a good nights sleep but that I can’t worry at night or I’ll keep myself up all night. As you can imagine if I try and sleep anywhere but in my own bed I get some anxiety about creating a mess in someone else’s bed. Add that to having problems sleeping already its pretty much a sure sign I won’t get any sleep unless I’m completely exhausted.

After the second surgery I was left with an incision that starts above my belly button and goes all the way down my stomach, I’ve never measured it but its probably around 6 inches. Anyways it took a long time to heal, but after about 6 months I was able to sleep on my side which helps a lot. I am able to get a whole lot more comfortable. I’ve heard of people being able to sleep on their stomach but the only way I would be comfortable with that is if I knew there was nothing in my stomach to fill the bag with. I have laid on my stomach for a massage for about 20 minutes and I have laid on my stomach for a little while before falling asleep, but I know I’m asking for a disaster if I fall asleep like that. I normally have about 6 pillows on my queen size bed. I have two under my head, one under my knees and a few along side my body. I normally have a pillow alongside the ileostomy for support or I place my blanket under it so that it isn’t flailing around. It might be excessive but I’d rather be comfortable than worry about the way I’m trying to sleep. Add in the Picc Line I received a little over a month ago, its a task to get comfortable and not have anything pressing on things they shouldn’t be. I’ve always loved my sleep and I attempt to get as much as possible no matter the situation.

If you have a new ileostomy my best advice is to get comfy pillows and bedding and try to make yourself as comfortable as possible. I know when I can’t sleep and I am worried about something to do with my ileostomy or Crohn’s disease I go right on the internet, but i’ve learned the light from your phone or computer will just make falling asleep that much harder. Try to crack open a book to take your mind off whatever is bothering you, whatever it is it’ll still be there in the morning. Just remember it will get easier and soon you’ll forget what it’s like to sleep without an ileostomy, just keep your head up and keep smiling :)

(By the way if you haven’t noticed I write most my posts at night because I can’t sleep)

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