Personal female ? On ostomies

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Regular Member

Date Joined Feb 2010
Total Posts : 42
   Posted 5/23/2011 10:46 PM (GMT -6)   
How soon after u have one can u have sex? Is it weird or embarrassing? Does it make a big difference??
Diagnosed w/UC 4-7-09. Have had 4 colonoscopies. 1 sigmoid colonoscopy n 1 endoscopy. Went from proctitis only in rectum to full pan colitis. No Meds have worked for me not even remicade. Been hospitalized 3xs n 5 mnths. Have Gastritis also. Current Meds: pred 40mg 7days tapper to 5mg. Nexium 40mg. Asacol4800mg. Xanax1mg.Tylenol w/codeine.having proctocolectomy on 5/26/11.

Regular Member

Date Joined Apr 2011
Total Posts : 463
   Posted 5/24/2011 4:10 AM (GMT -6)   

I just had a Loop ileostomy 2-weeks ago and it was done by laprioscopy, which is easier to heal from. My husband and i have an amazing relationship and he helps me care for my stoma. Been having some problems with the pouches and have had several leakage and a mess to clean up. I end up standing there crying and he calms me down and cleans the mess for me. I'm not embarrassed by it at all, but I don't know if it has to do with our communication with one another.

We've been married 23-years and have 7-kids, and a year ago my insides began falling out because of having so many kids, and my body just didn't have any muscles anymore. My colon and bladder fell out and I was having a difficult time handling it. But he got me thru it.

I think your question depends on if your married, dating...if you can talk about what your feeling and going thru. How comfortable are you with the other person.

I pray everything will work for you. Keep us posted on how you are doing? My email address is on the my members profile. Would love to keep chatting with you.

Your Healingwell Friend,

Regular Member

Date Joined May 2011
Total Posts : 129
   Posted 5/24/2011 9:55 AM (GMT -6)   
I've been wondering the same things. I am not even sure when I'll be having my surgery yet but that just gives me more time to wonder and scare myself silly!
I think though that I'll be ok because my boyfriend is extremely supportive of this decision. He says he'd do it too if it'd make me feel better :) . Logically I know it doesn't change who I am or anything but the fact of knowing it will be there in our faces at intimate times is a bit daunting to me. I figure I'll make covers for it at first and as we get used to it it'll be just part of me. It helps that he is willing to learn all about it with me and go to dr appts and ask questions. We had a family friend come by on the weekend and show us her supplies and answer a few things. We communicate really well and I know that will help even more.
I keep asking him if he'll still think I'm beautiful after and he keeps telling me (very patiently I might add lol) that my face will still be the same and so will my mind and my heart. He just wants me to be happy and healthy again. I think I have a keeper :)
As for your question of how long after I think it all depends on the individual and when you are both comfortable enough to try. Just don't push yourself would be the key. Do things at your own pace everyone's different right?
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 5/24/2011 11:32 AM (GMT -6)   
WT....He definitely is a "keeper" and I am very happy to hear you have such great support.

Hubby and I have been together for 43 years and of course it is easier when you have been together this long. So I am always very happy to hear these kind of stories of love and support which I hope is more the norm anyway.

My sister unexpectedly had this surgery 2 weeks prior to my husband. We recently had a "show and tell" in our kitchen and compared supplies and shared info as she was having issues which I think we were able to help her with as well. It's great you had the opportunity to go over the supplies with the family friend and have some discussion to overcome the "unknown" aspect of this. It really does help.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/24/2011 1:22 PM (GMT -6)   
physically it will probably be about a month to 6 weeks, especially if you have your butt sewn up :D
mentally it depends on your relationship, and how open it is.
my husband is fine with it, he's just happy i feel like having sex again! i just wear abelly band and it holds it up and out of the way. its a flesh colored thing, so you can't see it, and its soft cloth, so it's not like its in the way or anything.
honestly (sorry guys) they only care about a few things while you are having sex, and thats really not one of them!

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 5/24/2011 4:19 PM (GMT -6)   
Well, I've know my husband longer as an ileostomate! I don't even bother covering it that much anymore since most pouches have a cloth cover and are quiet.

It may take some time for the surgical pain to allow you but when you feel ready, go for it:)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Regular Member

Date Joined May 2011
Total Posts : 129
   Posted 5/25/2011 7:20 PM (GMT -6)   
Thank you Another UC Wife, I do believe that having support makes it alot easier. I'm still struggling sometimes with whether or not this is the right decision but then he reminds me that I'll be able to do some of the things I can't right now and I might even SMILE while doing them!

I know I'll feel nervous the first time after but I am imagining by then he'll have seen it anyway.

Still lots of thoughts rolling around in my head about everything all the time. Sometimes I think too much time is a bad thing...
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011

Regular Member

Date Joined May 2011
Total Posts : 31
   Posted 5/29/2011 6:51 AM (GMT -6)   
looks like you've just the the surgery only a few days ago. I can completely relate to your questions, and I think that when faced with the procolectomy, our biggest questions are about intimacy and how much the ostomy will change our relationships.
If your guy is being so supportive, then you can relax about that aspect. But I remember the days after the operation, which was only 2 months ago for me, and I can only say that I did not want to have sex for quite a while. Not that my sexuality was affected at all, no, but my entire sense of my body was set off in such a spin, that that the idea of being physical even with someone I love was simply not there. It is coming slowly back, as I gradually come back to myself and getting on with my life. I know I will go through a less intense version of all these changes when I have surgery to form the pouch, probably in December, and then a bit later, to have the take down. I have to have surgery three times, because I was taking prednisone at the time of the first surgery.
So give yourself as much time as you need to feel like taking up that aspect of your relationship again. Let your body heal. My feeling had to heal too. It might go more quickly for you than for me.
All the best...

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 5/29/2011 8:18 AM (GMT -6)   
I hope your surgery went well. You'll know when the time is right when you feel like having sex again. For me, it was about 2 months after surgery.

I've been married for 14 years and was sick for 7 of them, so my husband was happy that I was healthy and actually felt like having sex again. He isn't fazed by the pouch, so I don't cover it up, but I do wear short nighties to sleep, and most of the time, it doesn't even make it off, so neither of us see the pouch anyways. :-) In the beginning, I used to snap on a mini pouch before, which I did for me since I was still getting used to it, but now I don't bother with that anymore.

You're in my thoughts and prayers for a successful recovery.
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 5/29/2011 2:09 PM (GMT -6)   
I only met my husband 2 years after having my stoma done first of all and it never bothered him. I don't wear anything to cover it up and happy to walk around the house naked. It's part of me and to be honest as all my surgeries have been open ones the scars from thsoe and also where it had to be resited are more noticeable that the stoma bag which with the cover looks neat and tidy.

Like someone else said, men aren't looking at the stoma, they are far more interested in other areas of your body. I have had accidents and leaks over the years, at night when bag has burst from being too full and not waking up in time to empty and bless him, whilst I am changing the bag and cleaning myself up, he sorts out the bedding etc. He never complains and if I get upset or embarrassed by it, he says it doesn't matter and he loves me just the way I am, bag and all.

If you're with the right man/woman they will not worry about the stoma. If they are put off or repulsed/horrified etc then therre not the right person anyway.

As for how soon to have sex, try it and see. If it is too painful then stop. Because my surgeries were all open and involved large incision wounds then it is usually longer for me, maybe 5 weeks as scar is painful.
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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