on intimacy.... ileostomy

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dart
New Member


Date Joined May 2006
Total Posts : 12
   Posted 1/23/2011 10:36 PM (GMT -6)   
I'm a man in my early 40s who has enjoyed an active sex life even with the challenges of UC. I finally decided j-pouch surgery was the way to go. After the initial operation it was discovered that I may not be able to complete the operation, but that's a story for another time.

I've had my ileostomy for about 4 months now. After the initial soreness of the surgery wore off, and I could concentrate on things other than sleeping, eating, and moving from one room to another, I found that my physical sexual function was in tact. Things get a bit more descriptive after this, so let that be a warning to the sensitive.

A short time later, I "gave it a whirl" but felt most comfortable with my shirt on and keeping my underpants on to help control the pouch. This worked fine. As I was in between ops, I didn't feel the need to order a retaining belt.

This went on for a bit, and after a while, I figured that I could used the same binder clip that I used in the shower to help keep things dry with cling wrap (you know, the kind of clip you'd use in an office to hold papers---they come in several sizes) to hold the pouch out of the way. This worked quite well. I removed my underpants, but still keep on my shirt because I'm still a bit uncomfortable about that part. The shirt covers the bag and stoma.

I plan to order a retaining belt. Until then, the binder clip will keep me and my partner happy. The belts look pretty good on the site. We're both looking forward to it.

Hope this helped someone out there who may have questions. Belt discussions can be found on this site.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/23/2011 10:57 PM (GMT -6)   
how does the binder clip work? I don't think i understand that.
I tape mine up in the shower, and used to do that for sex, but then i found those belly band things and just use those now.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

dart
New Member


Date Joined May 2006
Total Posts : 12
   Posted 1/23/2011 11:14 PM (GMT -6)   
I fold the bag in half and put the binder clip at the top. For a shower, I then use one layer of Glad Cling Wrap on the bag, and another over the bag and seal. Some water usually makes it through, but no too much.

For intimacy, I try to empty the bag first, then flip the bottom of the pouch to the top and clip it together, essentially cutting the size of the bag in half. My partner has never complained, and was quite happy that the underpants were no longer in the picture!

BTW - saw your tag, summerstorm - UC for 7 before they pulled my colon and told me if I hadn't come voluntarily, I'd be there soon enough!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/24/2011 5:42 AM (GMT -6)   
Welcome, Dart!
Have you checked to see if there's a mini pouch that fits your wafer? I use the Coloplast Assura Extended Wear wafer #2833 with the standard pouch #13986 for every day use and snap on a mini pouch #13926 for intimate times.

My husband and I have been married for 14 years, and I was sick for 7 of them, so he's thrilled that I'm healthy and couldn't care less about the pouch. I do it for me, because the mini is half the size of the standard, and I can't tell it's there. I wish I could wear it every day, but it's too small, and I would have to empty too often.

Hope that helps!
Cecilia
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.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/7/2011 12:08 PM (GMT -6)   
Is your husband bothered by the bag, or is he afraid he will hurt you, with all the surgeries I can see that things might be painful for you.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 9/7/2011 12:09 PM (GMT -6)   
Rarlyseen, sorry that things have not returned to normal for you in the bedroom dept. I'm lucky that my husband, we met 2 years after I had my first surgery for ileo, is not bothered by me having a 'hoover bag' stuck to my stomach and is happy when I am feeling good and can participate. Maybe your husband is concerning about causing you pain after everything you have been through. I know after my third surgery, this was first one I had after I met hubby, he was worried in case I got hurt or injured and so had to be encouraged that it was ok and I would soon let him know if anything hurt.

Have a frank discussion with him, ask him outright what is stopping him, what does he feel. Some men feel helpless when their wives/partner/girlfriends get ill as they cannot do anything to put it right and this affects how they react and respond to them. If you are feeling 'up for it' why not take the lead, have a bath/shower together, massage and relax into it without feeling the pressure to perform, take things back to basics.

Hope you can work it out.
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, azathioprine, codeine, immodium, simethicone.

RarelySeen
Regular Member


Date Joined Sep 2011
Total Posts : 42
   Posted 9/7/2011 1:14 PM (GMT -6)   
Thank you summerstorm and stripey, I have asked him he says he does not know, why I just don't do it for him anymore, I know it is there but when I try to go to basics as you put it, it goes to ground, he is not concerned with hurting me, he knows I would tell him, we have discussed it to death, in the kindest and every-way a wife can, with words and without, he is only interested in a hug. It is stressing me to the max, I am trying not to think about it and just get on with my treatment but I am worried about my physicality and what the radiation and hysterectomy might be doing to me and what do I tell the doctor when he asks as he told me it was important I use it and keep it open, if nothing else but possible future treatment, I surrender it is all just too much, and there is nothing more I can do, he suggested I assist myself and that just made me cry, I am also concerned about when the ileostomy is reversed or if it can be reversed is this the rest of my life ? and if it can be reversed what then back to normal - Oh yeah that's going to happen, I am trying not to resent him and be angry but it is very hard, I have been seriously thinking of leaving as I think that is what he wants really. He may not be strong enough for all this, I know I am very strong, but this on top of what has happen alread and what I am currently doing is making it hard, I also stopped smoking a month before I got sick and have recently started again, my husband refuses to stop and the stress is too much for me to cope, I was thinking of going to stay near the hospital for the rest of my treatments aqs it is a 3 hours drive everyday to get there and back on the bus and very hard, it maybe a solution, for me anyway and I really have to put me first now.
Diagnosed June 2011 Malignant Solitary fibrous tumor, operation to remove it, Hysterectomy, resection of large bowel, ileostomy, radiation treatment, out look If I live I am okay if I don't i am not, the tumor is very rare and so they just don't know..but I am happy and well albeit with some challenges.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 9/7/2011 1:23 PM (GMT -6)   
I was trying to find a link to the website and photo of what I bought for intimacy. It's a black lace, wide sort of belt with a pocket for a medium to mini bag. But the website is down because the the woman, Gabi, is on vacation. I ordered panties from her as well as these lace belts, which are about 7.5 inches wide up- down and go around the hips covering the stoma. While it wasn't exctly cheap, it looks very very naughty. The only problem is that I prefer to use the large size bags because I have a better chance that way of sleeping through the night without having to wake up intuitively when I need to empty. The large bag doesn't fit into this belt pouch, so I have to coordinate wearing a medium with the rest of the day and night. But there could be worse things in life.
Gabi and her business are in Germany, but it might be worth ordering from her and paying internationa postage because she was a bit cheaper than some stoma underwear I saw on American websites.

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 9/7/2011 6:24 PM (GMT -6)   
I used to do the clip thing you did. Now I wear one of those tight sleeveless t-shirts (aka-wifebeater shirt). I fold the pouch into the belt and everything is kept nice and tight so it's not hanging down.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 9/7/2011 6:57 PM (GMT -6)   
RarelySeen,

I know how hard this is. I had to get a PERMANENT ileostomy due to injuries (not an illness) but this is it forever. I would have died without the ileo, so I chose life with an ileostomy. As the damages that were done to me which necessitated the ileostomy were damages done by 2 docs who operated for conditions it turns out (on review) I never had, that is my cross to bear. Am in litigation with original 2 docs but all the money in the world will not get my body back for me. So that is what I'm dealing with. Acceptance is hard and is always a work in progress. I just connected with a great counselor who is very worth while.

I'm not married, so am not in your shoes, nor did I have a dangerous disease to deal with which you do, so I am not really qualified to tell you what to do. BUT, one thing to think about is getting your treatments and getting the whole disease thing under control. If your hubbie will still hug you and is really still "there for you" emotionally I would treasure that. That in itself is a big deal. I have nobody steady and had to go through my whole thing alone. As far as keeping that "area" open, maybe have your doc advise on that one. You need to put your health first and getting well, deal with the rest later. I know, easier said than done.

Good luck, I feel for you. Rosemary

Subzeromambo
Veteran Member


Date Joined Sep 2009
Total Posts : 1143
   Posted 9/7/2011 9:08 PM (GMT -6)   
B'Dereh,
Please post Gabi's website! I have been using lacy garter belts with a short closed pouch but a simple lace belt with a pocket would be wonderful.
Szm

RarelySeen
Regular Member


Date Joined Sep 2011
Total Posts : 42
   Posted 9/8/2011 6:01 AM (GMT -6)   
Hi thanks for all your comment, I sew and i have have many nice lace belts, garters, mini skirts and bustiers, it is really not about anything I can do, it is out of my control, I can not force the guy if he is not into it that is that, Rosemary the doctor told me if I do not keep it open and I need radiation in that area again it may close up as radiation make to tissue stocky and shrink as does a hysto, and if i do not have sex he will insert a plastic tube, I believe i have been through enough and do not want to also suffer that indignity and really shouldn't have to because i am married and have access to a more natural way to accomplish the goal, so it really is about my health, if it was just about sex i would not even worry, it is the problems not having sex will cause me that has me stressed out not, the fact he does not want to have sex, we could deal with that if we had years to work it through but we don't as I am having the radiation now and the problems will be caused now, I am going to suggest he go get some tablets from the doctor and close his eyes and think of England if it is so horrible he can leave or get over it. Thank you every one for all your suggestions, I will be gentle but it is not about him right now and that is just to bad.
Diagnosed June 2011 Malignant Solitary fibrous tumor, operation to remove it, Hysterectomy, resection of large bowel, ileostomy, radiation treatment, out look If I live I am okay if I don't i am not, the tumor is very rare and so they just don't know..but I am happy and well albeit with some challenges.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 9/8/2011 3:45 PM (GMT -6)   
You have been understanding and patient with your husband and his lack of, what my friend calls it, 'manly urges' and maybe you need to be a bit more direct. Explain that it is affecting your recovery and also to a certain extent your self esteem. After everything you have gone through he should be showing you that the changes to your body don't matter to him and that he loves you and desires you regardless.

Suggest he go and see his GP, or maybe go together, as men are terrible at admiting that the bedroom dept is less than active. If the GP confirms there are no physical reasons for his lack of ardour then maybe look into some counselling. He may feel that he didn't sign up for this so soon and expected many years of good health before the 'in sickness' part of the vows kicked in. Not a valid reason but may explain why he is behaving like this, that he feels he has been cheated out of the married life he expected. Then again, I'm sure this wasn't what you had in mind either but you sound the stronger person emotionally.

Although I agree that having someone by your side when you are going through this is a huge importance you also need to consider your feelings and it wouldn't be good to let this fester too long or you may end up resenting each other later.

You haven't been married very long, how long have you been a couple before you were married and how old are you both, just wondered.
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, azathioprine, codeine, immodium, simethicone.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16067
   Posted 9/8/2011 8:10 PM (GMT -6)   
RarelySeen, I am sorry you're having a lot of stress in your life. I don't know what I would do if I were in your shoes. You really need to be around positive and supporting people and it doesn't sound like he is very supportive of you. Do you have family who will be there if you need them? I think you should get yourself a toy of some kind and try to enjoy yourself. I don't think there is anything wrong with giving oneself pleasure and if you have to do it for health purposes, that's what you have to do. Maybe if he sees you're doing it and enjoying yourself, he will join in and become interested. I can see how it is hard to want to do it when it's become something you have to do and it's no longer about pleasing each other but it's about necessity. On the other hand, I can see why you feel hurt that he doesn't want to help you in whatever way he can. Have you spoken to a professional about your concerns? I think it would be a good idea. It's nice to have an unbiased person that you can speak to, perhaps they could shed some light on how to proceed with this situation. I hope my suggestion wasn't offensive. Take care & get healthy.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: Asacol (3200mg) + 6mp (50mg) + Pristiq (50mg) + Canasa (1g PM) + cerazette

RarelySeen
Regular Member


Date Joined Sep 2011
Total Posts : 42
   Posted 9/10/2011 7:33 AM (GMT -6)   
Thank you all very much, I am just doing my treatments and trying not to think about it, one day though I will have to look at my life and wonder if it is all i want for myself for now and the future, if hopefully I will have one. In answer to the questions, we knew each-other for about 2 years before dating and another 2 before marrying and we are both over 40 years of age.
Diagnosed June 2011 Malignant Solitary fibrous tumor, operation to remove it, Hysterectomy, resection of large bowel, ileostomy, radiation treatment, out look If I live I am okay if I don't i am not, the tumor is very rare and so they just don't know..but I am happy and well albeit with some challenges.
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