Sleeping with an ileostomy

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steelcitystrong
Regular Member


Date Joined May 2007
Total Posts : 41
   Posted 5/2/2011 11:30 AM (GMT -6)   
Hello!
I am new to this site and am using this along with j-pouch.org to get some advice and read up on everything. Tomorrow I will be 2 weeks post step 1 of a 3 step j-pouch procedure. I had a total colectomy and a temporary ileostomy. My surgery was Tues. April 19 and I was home just a few days later on Saturday the 23. Had my staples out a few days ago and am feeling pretty good. I'm off pain pills (Percocet then Vicodin, last dose was last night) and just have some minimal discomfort/muscle aches. I haven't been able to lay down and sleep comfortably in a bed at all this whole time. Since I've been home, I've slept in a reclining chair every night. I've tried laying in the bed, propping my back up, on my sides, nothing works. I feel a constant heavy feeling/pressure around my ileo and cannot get comfy for the life of me once its bedtime. I just head out to the living room and fall asleep there in the chair, sleeping through the night, but do have to get up once or twice to check the bag/empty as needed. Has anyone else experienced this? I've tried body pillows, everything I can think of! I don't wanna get so used to a recliner that I won't be able to fall asleep in the bed... any suggestions?

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 5/2/2011 1:39 PM (GMT -6)   
Hi, I am also new to this site. I'm sorry you are having problems sleeping. I have a question for you...I am having an ileostomy in 8-days. What should I expect following surgery. Do you feel bloated at all? I'm pretty nervous about it all.

Serenitee

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 5/2/2011 2:10 PM (GMT -6)   
I found it uncomfortable to sleep in the weeks after surgery too. I always sleep on my side, and I would feel pulling with gravity. Also, when I rolled over it felt like everything sloshed to one side. It was really, really weird, but my surgeon confirmed that things can move around a little in the empty space until things heal and settle, so I guess that is what I was feeling. It went away around 6 weeks for me, though I do still get the occasional pain when I first roll over on my other side when resting. Then as everything settles into the new position, it quickly goes away. Remember that your body went through a lot of trauma in having surgery, and it takes a while to get back to normal. Just sleep in whatever position you need to for now so that you can get lots of needed rest. One thing that helped initially was hugging a pillow against my abdomen. Now that I am further along in my healing, I don't do that anymore, but I do put a pillow between my knees as this makes me more comfortable for some reason.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/201

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 5/2/2011 2:45 PM (GMT -6)   
Im not sure why you can't get a good nights sleep... especially after I'm sure you didn't sleep well in the hospital with them coming in and out all during the night hours. If I remember correct my second time I had a illiostomy placed I felt that heavy pressure feeling, but I had surgery for 3 porforations that time.... holes in my small bowel, and I was spewing feces into my abdominal cavity. I could have died from it, from the shock. Again I don't have a clue why you can not sleep though.

You can feel bloated. You will be in pain, they'll give you IV pain medication for that and send you home on something by mouth. Recovery is very quick, usually your not even in the hospital for more then 3 to 5 days following the surgery. I think your working yourself up a little bit to be scared, is that what's happening? Because there's nothing to be scared of. Im only 26 and I've had my illiostomy for 6 and a half years, it had to be one of the best decision I've ever made, and I do mean had to be, because it was really I had to have it done I was to sick not to, my colon was just to diseased to recover.

Well I wish you luck. And I'm sure everything will go just fine. If you wish to ask me anything about my experience just start a new thread to me.

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 5/2/2011 2:46 PM (GMT -6)   
I couldn't lay on my left side until about three weeks after surgery and my right (stoma side) until four weeks out. I didn't experience the heaviness when laying on my back, but my back did get sore. A lot of times I would start off in bed until my back couldn't take it anymore and then end up in the recliner. Sleep where you can for now, it will get easier and better as time passes.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/2/2011 3:11 PM (GMT -6)   
Couldn't lay on my sides for about 5 weeks after surgery but what I did find was in hospital you tend to sleep in a bed that isn't totally flat so it doesn't pull on the stomach and this means when you get back to your own bed it can feel odd and have a pullling heavy sensation. Try using more pillows to prop you up and gradually reduce this over a few weeks until you are comfortable lying flat again.

It is true that during the op there is a lot of pulling stuff around inside you and this can take a while to settle. When my husband drives me home after ops I feel like I'm on a rollercoaster and any bump I get that stomach falling sensation, very odd.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

steelcitystrong
Regular Member


Date Joined May 2007
Total Posts : 41
   Posted 5/3/2011 7:55 AM (GMT -6)   
Thanks a lot everyone, I'm just gonna do what I can as it comes. I was up for 4 hours in the middle of the night last night but not due to position, once I was up to empty--
I couldnt fall back asleep!! Was my first night without pain pills, but I wasn't in pain!? Mind wouldnt fall back asleep despite being as comfy as it gets these days.
Sigh.. Guess this is another issue... Falling back asleep after the blinding bathroom lights.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/3/2011 3:07 PM (GMT -6)   
I never turn any lights in when I get up in middle of the night. I have just enough light coming in through the bathroom window to be able to see what I'm doing without having to put main light on, find that helps a lot. It you don't have enough outside natural light to see by try one of those night lights you can out in a plug socket close to the bathroom and just leave the door open a little. The light isn't very bright and this should help with the waking up fully bit.

It does get easier to empty bag whilst on autopilot as time goes on and you get used to it. Now I do it half asleep.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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