Community Forum

 hello out  there- i am a 37 year old female who has had crohn's for almost 21 years. i am a single mom of 2 beautiful boys, ages 5 and 7. my question for anyone out there dealing with an ostomy bag is: how do you go about leading a normal life, when your bag is constantly leaking,even though i've treid every barrier ring and strip paste there is. i always carry exxtra supplies with me, but my bag seems to leak of course at the most inopportune times-everywhere in public of course. My other question is more personal-I', just starting to date again, and I'm very nervous about having to explain not only what the bag is, but how self conscious i feel if something eventually leads to intimacy-i feel the bag will not only get int he way, but be a huge distraction, not to mention,extremely unatttractive. i do want to meet someone, but this has definitely held me back. any suggestions would be greatly appreciated.

 Reply posted for roklegend.

have you tried an ostomy belt. I had to go to a belt because I leaked so bad that seems to help and get me a little longer wear time. As for dating, If the person likes you alot or loves you he will be respectful of your ostomy. When I first got mine, i was with a man for a few months and I beg him to leave me, but he wouldn't. I married that man 10 years into our relationship. we are going on our 9th wedding anniversary in oct. and in dec. we will have together for 20 years. I think as long as you are okay with it and explain the disease and the ostomy to them they are more receptive to you and your needs. also they make special cover ups for ostomy for the intimate moments and the also request crotchless panties.  believe me be open and honest with them and they will be back to you. My Husband loves that I am very open about my ostomy, he thinks that makes me a better person. i go to our hospital and let the student nurses practice on me,also Iam not afraid to talk to anyone about it. It's mine and I take full responsiblity for it. I am thankful Iam alive.I hope this has helped you.

 Reply posted for wesson48.

Dear Amy, I got my ileoostomy in 1997 from many complications from crohns. I think i have become a much better person because of it. I always had leakage from my rectum and my bowel blew out and went threw my insides. It took me months to heal because of all the posion that went threw my body.I almost died from it too. without my ostomy i would not be alive todat and i am so thankful that they have this.I have had 44 operations to date and took along road to get me where i am at.But I am thankful for everyday i am still here and I definately live one day at a time.
hope this helped,
mary

 Reply posted for roklegend.

I am a 38 yr old woman who has had a permanent ileostomy due to Crohn's Disease for 8 months now and I , too, have problems with leakage. I use the Eakin Seal and Hye Pink tape and found these two products to be my saving grace, since I also went through every product known to man. As mentioned previously, your wound nurse will help you with deciding which supplies work best for you, but my wound nurse was an ostomate herself and she was able to really give me hands on knowledge. Unfortunately with me, my stoma is above the belly button and pretty much on top of it, so when it leaks, it leaks into the belly button. Eventually, I am going to have my belly button closed up to help with the leakage, but am waiting for the swelling and other "issues" to be taken care of first. Another problem I face, probably due to the loctaion of my stoma, is wearing pants. I only wear yoga or pajama pants since I am able to just slip them over my stoma without restricting anything. It is definitely frustrating, especially when I need to dress up and I can't find "normal" clothes anywhere that fits comfortably.

As to your intimacy question, I am married and it took me a long time to be comfortable with my husband. I bought a maternity band at Target that just slips over your stomach and it hides your bag. It is intended to hold up your pants, but it works for the pouch too and it is black, so I feel comfortable. You do need to be comfortable with yourself first and be honest because what I found is that if someone really loves you and wants to be with you, they are seeing you and not your pouch. My husband doesn't even care that I have this crazy thing hanging from me that sometimes makes noise at the most innappropriate times!! Now, we just laugh about it!

Good luck and please email me if you want to talk! baglady37@gmail.com

 Reply posted for Thegrita.

I was just wondering if I could talk to you about your ostomy bag.  I am probably facing surgery and am kinda scared about what this would mean for my life.  My mail is VBallxChic@aol.com  I hope to hear from you soon!!

Thanks,

Amy

 Reply posted for roklegend.

Hi there you are not alone!!!

I am 48 with a permanent iliostomy and Crohn's. I have finely solved most of my leaky bag issues after seeing a Ostomy Nurse. If you have not done so you should  see one they have different suppliers and can find the best fit for your stoma. You can look up on Internet under WOCN nurses. All supplies are not alike.

The intimacy issues will heal with time. The best solution I have found for me is to be as open and honest about my ostomy as possible with everyone in my life. When they are free to ask questions not only am I more comfortable about it but so are they.

I am married but the bag has been in my head expecialy in the beginning and I used a tube top around my waist to keep bag in place and build a little self confidence when we had intercourse, it helped.