How do you sleep with an ileostomy!?

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ghoti1
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/11/2017 3:52 PM (GMT -6)   
I am a new ostomate—3 weeks out from surgery. I've been having a hard time adjusting to this massive lifestyle change, and I'm having difficulties finding the right appliance and technique to get a good seal and allow my peristomal skin, which is raw and weeping in some spots, to heal.

But perhaps my biggest difficulty is in getting good sleep! I'm naturally a side sleeper, or sometimes I sleep on my back. But I'm nervous to sleep on my side now because the pouch feels like it's pulling and I'm afraid that doing so will lead to a leak. And if I sleep flat on my back, then my output, which is rather watery, sits on top of my stoma and the wafer, which I'm pretty sure will cause the seal to erode and the wafer to stop sticking pretty quickly. So I've been sleeping in a reclined position so that gravity will move the output to the bottom of the pouch—but I don't find that comfortable at all.

I've also been setting an alarm for every few hours throughout the night so that I can get up to empty the pouch. So I'm sleeping only for short periods at a time and am uncomfortable the whole time. I'm exhausted!

Does anyone have any advice or suggestions that might help? What positions work for you? Does the kind of pouch you use make a difference?

Thanks in advance!

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1529
   Posted 9/11/2017 4:33 PM (GMT -6)   
3 weeks is still really early so your body is still adjusting a lot. As your body adjusts your output should thicken and will likely also decrease in volume. In the beginning I had to get up 1-2 times to empty very liquid output. Now I sleep through the night.

As for sleeping positions. I like to sleep on my side and I have not had an issue but depending what side I keep on I use a pillow. If I sleep on the same side as my stoma I don't feel like I need the support but if I sleep on my side opposite the stoma I usually use a soft pillow that helps support my bag. I also sleep on my back sometimes without issue. I haven't found that the output staying up top or around my stoma has been an issue.

Some bags pull more than others. I like the Coloplast Mio with adhesive coupling. I use the medium wafer and with the adhesive coupling it has a bigger landing area than some other bags I I feel more support and less tugging of the bag. I liked Hollister the least for this reason because the wafer was so small and I felt like the bag was always tugging or hanging.

Everyone is different so it is good to order samples from several companies if you haven't already. At the beginning I tried bags from 4 different manufacturers.
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

cmfdrama
New Member


Date Joined Jun 2017
Total Posts : 15
   Posted 9/15/2017 11:45 AM (GMT -6)   
Since my surgery, I've only slept on my back. At first it was due to abdominal pain. Then it became more of fear of rolling over on my right side (stoma side). I have a body pillow on my right side just in case. I also stay up late so I don't have to set an alarm in the middle of night to empty my pouch. On average I get 4-5 hours of sleep or even push it 6 hours at times. I do limit food and liquids a few hours before I go to bed to reduce the amount of output and/or gas I have overnight and tend to eat more thickening foods as well. I've also made a pouch cover for my ostomy bag using those bed liners for kids that may still wet the bed. I put it on every night before bed. That way, if I ever do have a leak (which luckily I've never had) while I sleep, it will go into the absorbant pouch cover and not over me or anything else.

I hope this information helps.

cmfdrama
Age: 37
Rectal Cancer - Stage T3N1M0 - Diagnosed 12/2/2016
Radiation and Chemo (Capecitabine) - mid-January to end of February 2017. Complete Pathological Response (CPR) resulted.
Surgery April 25, 2017 -Transanal Total Mesorectal Excision (taTME) with temporary Diverting Loop Ileostomy
Chemo (Capecitabine) - May 29 - Sept. 27, 2017
Ileostomy Reversal - anticipated November 2017

Albannach
Regular Member


Date Joined Jan 2016
Total Posts : 90
   Posted 9/16/2017 3:46 PM (GMT -6)   
When I had my ileostomy, at the start I was afraid to sleep on my stomach (which is my natural sleeping position) as my stoma was always fully inflated by the time I woke up in the morning. It took about two weeks to get used to sleeping on my back, but I adjusted and it was fine. Towards the end of my time with the stoma (about 3 months), I actually stopped worrying about it, and started sleeping on my stomach again. I would usually wake up on my side (with a fully inflated bag) - I think at some point in the night I would turn onto my side because of the bag filling up.

If you can find a bag that you're really confident in, it should make life (and sleeping) more relaxed. I really liked the Coloplast Sensura Mio. It always stuck to my skin really well.

Bmanningco
New Member


Date Joined Sep 2016
Total Posts : 4
   Posted 9/28/2017 10:50 PM (GMT -6)   
I can commiserate with you. I haven't slept through the night in the last year because of my ileostomy. I am a stomach sleeper so it's difficult not being able to sleep that way. I have had leaks, explosions, ballooned pouches, everything. The only time I was able to be comfortable was when a changed my eating habits and ate many small snacks throughout the day rather than 3 larger meals.

Help In CO
New Member


Date Joined Sep 2017
Total Posts : 2
   Posted 9/29/2017 12:08 PM (GMT -6)   
To the person with the new ostomy bag don't worry it will not fall off. Empty it before you sleep. You can add some surgery tape or get a bad holder from your supplier. Also put a towel on the bed if you feel more comfortable if case you think it is going to to have a problems and you can wash the bags out to save money. You have to get use to the weight. Talk also to your doctor or wound care person

Nazareth
Regular Member


Date Joined Jun 2014
Total Posts : 68
   Posted 10/4/2017 1:43 AM (GMT -6)   
I have recently been taking metamucil- two heaping teaspoons, and it bulks up the stool quite a bit- I always take 2 right before bed- and it really cuts down o nthe liquid-

Also- have you tried using eakin seal? They might help stick the pouch a bit better while you heal- Karaya seals are also very healing- but lately the hollister karaya pouches are made kinda terrible- they sometimes have very little glue holdign hte karaya to the plastic ring- and they leak between the karaya and ring- but ones that are sealed good really help the skin to heal- it';s got healiong properties i nthe karaya-

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4749
   Posted 10/6/2017 9:41 AM (GMT -6)   
At one point I got the extra large bags (magnums) to sleep with; I was able to sleep through the night and I'd switch them out to the regular bags in the morning.

Are you wearing an ostomy belt? I would also sleep with a shirt over my ostomy just as some extra protection and would keep it close to my body.

Do you have an adjustable bed? If I went back to any ostomy I'd probably get an adjustable bed just so that I could position my body better at night.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226
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