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BetterBowels
(@betterbowels)
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December 2, 2018 8:46 pm  

Hey all,

Hope everyone is doing well. I'm trying to navigate my life as an ostomate when it comes to intimacy. I haven't felt self conscious thus far. But I've met someone special, and I'm worried about sleeping with someone and having an issue. I dont often deal with leakage in the middle of the night, but it would be extremely embarrassing to experience a leak whilst sharing a bed. Anyone have any good advice?

Thanks

Darla


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VeganOstomy
(@veganostomy)
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December 3, 2018 1:48 am  

Communication and planning. 

Do your best to prevent any problems from happening, but depending on where you are at with explaining your ostomy to this special person, you may (or may not) need to share any information regarding potential night issues. 

I was already married when I had my surgery, but I'm hoping that others can chime in with their own experiences and advice. 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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BetterBowels
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December 3, 2018 3:01 am  

ThanksI'm sure that with the right person, things will be more comfortable. I just dont want my own fears stopping me from finding that person. Still, good advice. Thank you!


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john68
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December 3, 2018 4:01 am  

Being open about the Ostomy from the start solves a lot of issues. When meeting someone it’s not really a conversation starter, but for me a second date was the best time to bring it up. I had different girlfriends before being married and the Ostomy never posed an issue. But should you find someone reacts badly, well maybe that’s not the person for you. Just relax and go with the flow. 😀

ileostomy 31st August 1994 for Crohns


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Dona
 Dona
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December 3, 2018 7:20 pm  

Hi Darla,

You said you don't often experience leakage at night so thats good. But , when you do experience a leak have you been able to figure out why? Did the bag get too full? Too much gas buildup, roll over on it, too long between changes, ate too much or the wrong stuff ( for me that leads to pancaking..and leaks),

Too much swimming or just getting it all wet without applying heat and pressure again afterwards also affects my wear time. It could be one or several causes. Also try to check the wafer through the night for any dampness around the edges or that creepy crawly feeling that sometimes comes some hours before an actual leak. ( do you ever feel that?).

Did you get a good 'set' last time you changed? Or anything else you can think of that affects the integrity of the appliance.

If you do the best you can, and still have a leak, be prepared for it so it causes the minimal amount of time to deal with. Have EVERYTHING at the ready for a quick change, easy to get at and everything you need with one bathroom trip. ( I prepackage things in a ziplock bag...makes little kits of the actual wafer, bag, disposal bag, removal wipes...what ever you use).

If you can catch it early and deal with it smoothly, that might help you. After a recent trip ( no leaks! yeah) I even purposefully let it go too long back here at home until I had a leak in the night and then did a quick change with just the things I would have in my handbag and in an airplane head. It went O.K. and gave me some sort of feeling of security. ( I hope not unfounded!HA).

Remember, a commando change doesn't have to be perfect, it just has to get you to the next day. ( or airport).

I too was long married before my illness and intimacy was difficult when I was very sick. I really understand your concerns and desire to get back to a normal loving life.

Good luck. If you have more questions, hopefully I  or others of us here can help. This is worth putting some time into!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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sjlovestosing
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December 4, 2018 8:08 am  

Hi Dona,
Great advice - also for a newbie like me - there's still so much I am learning. Thank you and others for the wonderful advice I get from this forum!

Stella


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Dona
 Dona
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December 4, 2018 10:29 am  

It does get easier. You will get more confident with the passing of time. I have been 'at it' a bit more than three years and the difference in my self confidence is huge. Thanks in large part to this forum/website.

Be well.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Dona
 Dona
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December 4, 2018 10:36 am  

Bonus tip # 305...

keep a wash cloth or hand towel close to the bed where you can grab it in the dark...emergency leak containment....and keep smiling.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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john68
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December 4, 2018 10:42 am  

Great tip Dona, I have had to wake my wife to go and fetch me one. And I still don’t have one left handy, but that’s going to change this evening 😀

ileostomy 31st August 1994 for Crohns


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BetterBowels
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December 4, 2018 11:50 am  

Dona! Thank you so much! That is all really good advice! I love the idea of having a towel or washcloth handy. That's so smart. I'm going to do that from now on. Thanks for the support everyone! I'll definitely feel more confident with the newfound knowledge! As always, so helpful, Dona!


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Zvitusk
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December 7, 2018 2:27 pm  

My WOCN recommended that I use a pregnant woman elastic band to hold my bag from flapping around. I turn my bag to horizontal and slip the band over it. It makes for a more comfortable experience. 

When we are " finished ", I take it off and put on my pj. In the last three years, my bag fell off twice. Once , when I ate a feast, and once when I forgot to snap the lock on my bag and it popped of. So I  did a laundry and shower and went back to sleep. 

NO BIG DEAL!

Z

 


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Linda Knelsen
(@dlkfiretruck)
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Posts: 232
December 12, 2018 8:17 am  

I was married almost 30 years, I was also horribly embarrassed to have a first few shared time with my hubby.  I did a few things to minimize my fears. I kept a sample bottle of the air spray that Hollister makes on the night stand, it works exceptionally well I find. I had bought a few of those fancy hospital pads, I placed one under me, covered it with a towel, and then  like Dona says, I kept a towel  handy just in case, but I also covered my abdomen with hair size towel to prevent my mans slightly sweaty tummy from tugging on the bag. Use a flashlight to check for security of the pouch on your tummy if need be. As far as when to tell someone, don't go right to the bag issues, too much too soon. Start with your tummy issues, the name, how it acts and what makes you not well.  See how the response is and gauge your  information from there. If your friend is asking questions this is usually a good sign, they are willing to learn about another part of what makes you,  you. Somewhere in there mention that some people end up with an ostomy, hopefully questions will arise, if not  they may not know what it is, or what to ask. Help them along a little.  This is your chance to explain what the bag looks like, how it sticks to the tummy, if you have one handy, depending on where you are, take it out let him/her see it. It kind of wakes them up gently to the idea. The person may then ask if you have one because obviously you have the pouch. Learn the name of the things that make it what it is. See the video Eric has on, I think it is called definitions or something like that. Eric? Calling it a bag is for later, call it a pouch from the start. Keep it professional. You will be able to tell when your friend is ready for more casual information. Ask if the person knows anyone with one, or if they have heard of one? Explain it to them gently. Then you can tell her/him your the first or the fifth then. Him/her keeps this in general for future readers. You will know when to get on the more personal side of it. Remember what foods to eat or not to eat before hand as that may cause too much action, noise and visits to the Lu. Assure the person of  the cleanliness aspects of the whole system, and that there is a deodorant to put in the bag. You can make it as mechanical as you like, and assure them that togetherness can be done very successfully and without incidence.  Honesty is the best policy.  If a person walks away, ask if they just need some time to figure things out and encourage questions. Good luck with this matter and I hope things go very well for you.I hope this has been helpful. Have fun and do not be afraid to give them time to wrap their head around it, and you can,  if comfortable, make a joke about it here and there. My hubby made the jokes and it sure lightened up the situation for me. Gosh I miss him so much.


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