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Ladies: dating with an ileostomy/jpouch?

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Posted 12/29/2014 5:44 PM (GMT 0)
Hey folks--

I'm new to this particular forum, been a regular of the UC one for a while now. It is looking like j pouch surgery may be the next logical step for me. I've built of antibodies to Remicade and will try Entyvio before the jump, but it's something I'm seriously considering.

I've done a lot of research on having a j pouch and although there are some horror stories out there, the large majority of people have really great stories and have "talked me off the cliff" so to speak. The only thing that makes me nervous is telling my future partner about all of this. My last boyfriend ditched out when things got tough and I got diagnosed with UC. He used to make fun of me and tease me about my colon and the side effects that came with a high dosage of prednisone. Needless to say, he got kicked to the curb pretty quickly.

I worry that if I do this, no one will want to be with me because of the bag/jpouch. I know it's probably the least of my concerns given this awful disease, but what's life if you can't share it with someone? I know that there are some serious concerns with fertility in women who have a jpouch and it would be unlikely for me to have a healthy pregnancy; how do you explain this to someone I would want to spend my life with? Feeling a bit overwhelmed. Would love to hear from some of you about your experiences telling your SO about this stuff.
Posted 12/30/2014 4:41 AM (GMT 0)
It's a normal concern, I'm sure all of us have had this question to one degree or another. I remember staying up all night after my first surgery watching YouTube videos - there's some tremendous young women out there sharing all, including their dating stories!
I'll just say for now that when I conveyed my fear/insecurities to my fella, he told me that he doesn't see the ostomy bag as anything more than a helpful medical device... No different than eyeglasses.
<3
I think being honest, and unashamed (heck, we can be PROUD of what we have survived!) will allow the right guy to come forward. You deserve nothing less!
Posted 12/30/2014 1:41 PM (GMT 0)
I don't know about the fertility aspect, but talking with a colo-rectal surgeon and/or Ob/Gyn should definitely shed some light on that! I have a perm ileo, & as far as the bag is concerned... I swear my husband doesn't even notice it when we are intimate. Dating with a bag would be a bit tougher- but really, are you actually going to get naked with someone you just started dating? Know what I mean? Hopefully, by the time things progress to that point, you will know if the person you're with will be ok with it. I wear tube tops over the bag at times, to hold it flat to my body- during sex, I sometimes wear one also. Just for my own comfort. And by the time you're physically ready to have sex, you'll be so adept at living with the bag that it really isn't as noticeable as you'd think...
Posted 12/30/2014 8:18 PM (GMT 0)

ColoradoUC-er said...
My last boyfriend ditched out when things got tough and I got diagnosed with UC. He used to make fun of me and tease me about my colon and the side effects that came with a high dosage of prednisone. Needless to say, he got kicked to the curb pretty quickly.

I worry that if I do this, no one will want to be with me because of the bag/jpouch. I know it's probably the least of my concerns given this awful disease, but what's life if you can't share it with someone? I know that there are some serious concerns with fertility in women who have a jpouch and it would be unlikely for me to have a healthy pregnancy; how do you explain this to someone I would want to spend my life with? Feeling a bit overwhelmed. Would love to hear from some of you about your experiences telling your SO about this stuff.

It sounds like your last boyfriend was a mean guy all along, it just took the UC to bring it to a head enough for you to actually get rid of him. Would you rather be with someone who was cruel to you than be alone? You deserve better. Obviously most people never have a colectomy or have an ileostomy, but almost everyone goes through some kind of trauma at some point in their lives. Are you looking for a partner who will be fun to have around *until* something bad happens, or someone who would stick with you? If someone won't give you a chance now with an ileostomy, that's probably an indication that they wouldn't stick with you through thick or thin later on, so why waste your time?

I dated with my ileostomy and I've dated with my j-pouch. I agree completely that being honest and unashamed goes a long way. You have to believe that someone would be lucky to be with you *as you are*, because that's the truth!
Posted 12/30/2014 8:42 PM (GMT 0)
It does sound like you were good to get rid of the last guy; I agree w/Pluot, and can understand why that has you wary.

I was already partnered so I can't help w/the dating (although I had a major flare about two weeks into our relationship, thought that nothing could be less attractive, and my partner was completely unphased, just thought it was part of the package, just as her then ten-year-old daughter was ...).

One thing to keep in mind is that you could feel a lot better from the surgery, and perhaps able to do many things that you can't do now ... for me, being sick had a much bigger impact on the relationship than having a bag ever did....
Posted 12/31/2014 4:47 PM (GMT 0)
Thanks for the feedback, everyone! i so appreciate it. :)
Posted 1/2/2015 9:04 PM (GMT 0)
**WARNING: KIND OF NEGATIVE--LOTS OF FEARS**

I'm scheduled for colostomy surgery on Jan 27th, along with a few other surgeries at the same time, but I'm basically terrified about not finding a guy after surgery. Haven't had much good luck with them before surgery, and I know I'm always saying that I wouldn't want to be with a guy who had a problem with my physical "issues", that I want a guy who loves me for me, but what if I don't find him? What if he doesn't exist?

I don't want to spend my life alone, I've had enough of that. I don't even worry so much about the guy not handling things, b/c I do think that any guy I'd want to be with would accept all of me, but I'm worried about my fears…like I'm going to push away a guy before he can push me away. I guess I am not accepting of myself. I feel like I will be even more of a freak than I am now.

I'm sorry for being so negative. I just can't see how any guy will truly love me and I know I don't want to spend the rest of my life alone. How do you learn to accept your own body and not constantly apologize for it or crack jokes about yourself or feel inferior because you're different? It's like I look at all of you and I don't see you as inferior or different, b/c you all have so many wonderful things about you that the physical stuff doesn't (and never should) matter, but I feel like I'm different from everyone else. I'm a freak. My ostomy will just be a permanent excuse to explain why I am unloved. Unloveable. I don't know.

How do I get to a place where I'm ok with my ostomy and with my bladder stoma and giant surgery scars? Just struggling.
Posted 1/2/2015 10:38 PM (GMT 0)
I too was already dating my hubby when I was diagnosed with Crohn's and we have been together a long time (21 years). Hubby doesn't notice my scars or my ostomy, in fact he's just so happy I am alive, I could have had anything done to me and he would be fine with it. This morning I had gotten out of the shower and was standing in the bathroom when my towel dropped. He was sitting on the bed and said to me, "Man, you are going to look good in a bikini when we go away in March. We should go bikini shopping." He didn't see my scars or my Ostomy, he just saw me.

Keep in mind my scar is from just below my rib cage all the way down, it's still red and new. I have my old ostomy site which isn't filled in yet and my new stoma site on the other side. I look like a road map of Italy but to him, I'm just me, his wife, mother to a beautiful daughter and someone who has fought a crappy disease and has won.

If I were in the dating game, I would put a positive spin on my ostomy. It saved my life, take it or leave it. It's not going anywhere so either get used to it or pack your bags.

Perhaps that comes with time and age tho! I have np been thru too much to really care about what others think.

You will be just fine!
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