Hi all-

I haven't been on the site in awhile, but trying to be there for my bf.

He had his j-pouch reversed in July. He is still coming to terms with the realization that he will have a permanent bag for the rest of his life and seems to be having a hard time dealing with it. I know he gets depressed and I have looked for support groups for him and when I mention it he seems interested, but then when i look for more info for him he seems not to be. I feel that if he talked to other ostomates it may help him see things in a different light. I know it could take many years to adjust, but in the meantime I feel like it has taken over his life. He talks about it all the time. He is always touching or looking at the bag and I know others have noticed this. I think he's so afraid of any leaks (which has happened quite a few times and I know comes with the territory) and/or he is trying to move whatever waste is coming out of the stoma away from his skin so he can avoid any irritation. He uses transparent bags so I think this is part of the problem. I have offered to buy him an ostomy cover so he won't have to look at "it" all the time, but I think he would still find some way to check it all the time. Does anyone else check their bag all the time? He empties the bag quite often throughout the day and maybe a few times at night. I am assuming this is normal for everyone? I feel so bad for him that he is so obsessed with the bag and talking about it. I am very supportive and understanding and have been there for him since day one of his UC diagnosis, several surgeries, infections, blood clots, reversals, etc. and I want to help in any way I can. I know how everyone handles and adjusts to life with a bag is different. Just wondering if anyone has any advice or suggestions for adjusting.

At the same time he has been in and out of work because he has been so sick the last few years. He no longer has insurance at this time. He uses the drainable pouches and wafers. His stoma size is 1 3/4" (45mm). He is currently using Convatec bags and wafers, but was wondering if anyone had any suggestions for other manufacturers that have good products or other options. Also, any suggestions for finding pouches and wafers for very low cost/free?

Thanks to all of you for listening. I know all of this can be very draining on both the ostomate and their loved one. I just want him to find some peace after all the suffering he has done over the last 5+ years. I am hoping he will be more accepting of this in time and it will become second nature. I tell him all the time that he should be thankful that he didn't lose an arm or leg, or his vision or hearing and to take things one day at a time.

Have a good night and I hope to hear from you soon!

MB

Hello MB,

At first I use to check my ileostomy all the time and could even feel when food contents were coming out of my stoma. Things greatly improve over time. I no longer worry about leaks and no longer feel food coming out of my stoma. I don't even carry supplies with me anymore. I've put my appliance system through its paces, but have never had it fall off. Also, as your boy friend gets more confident with his appliance system, he will know when it's time for an appliance change--he will feel very itchy or the flange will start to get a dark ring around it, indicating that the material is breaking down (happens every so often). Since your boy friend has a permanent ileostomy, that means he should have a pretty nice stoma--one that sticks out a bit and allows for food to come out freely and then down the bag. HE NEEDS TO START WEARING OPAQUE COLORED BAGS. They send people home from the hospital with the white clear ones, but no one wants to see what's coming through. It's time for him to change to the opaque ones. An ostomy belt would be very helpful, too. I would never wear an appliance without one.

Have him Google Jessica Grossman of "Undercover Ostomy". She is an extraordinary young woman and the tasteful photographs of her and her ileostomy bag are beautiful. She wants to show "the ostomy in a positive light, using thought-provoking images and facilitating an online discussion".

Another person your boy friend might want to Goggle is Bob Baker. He has an ileostomy from UC and colon cancer and recently rode his bike across the country. He "dipped his bike tires in the Atlantic at Long Island Sound and set out on a journey to raise ostomy awareness across the nation", ending up in Washington Park dipping his wheels in the Pacific.

Your boy friend might like a subscription to "The Phoenix"; a magazine published by the United Ostomy Association of America (UOAA). It's a great magazine filled with useful information and wonderful stories about people with ostomies and urostomies. I attended their conference in Reno this past August and was thrilled to see so many people with ostomies all in one place. I also met and spoke with Jessica Grossman and Bob Baker.

You are a great support and comfort to him, but he has to do things for himself and start the process of moving forward with his life as an ostomate. He will be just fine.

Caty

This message has been edited. Last edited by: Caty,

Your friend is welcome to join my ileo only facebook page. private message me and I will give him the info. What he is experiencing is normal and support from other ileo folk really helps. we have people with years of experience and people who are new so he can find people to talk to about these issues.

What are your boyfriends fears. I'm sure his health is better now with the ostomy. Is that not the most important thing. Point out to him that he has you and he has his health.

I find myself checking my bag sometime, though I try to duck away to a bathroom. I'm just checking though whether I need to empty it. If he's concerned about leakage has he tried all the products out there? Maybe he hasn't found the right pouching system yet.

If he had his pouch reversed in july its been 7 months now. Maybe he needs a support group, check out the UOAA website for a listing of area support groups.

Maybe he should try a kpouch