Hi all-

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

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.

As a final note, I know men and women handle things differently. I know this illness and subsequet surgeries resulting in the permanent colostomy bag has taken a toll on his mental and physical health. He doesnt' have a lot of energy (I have asked him to have his b-12 levels checked) and he struggles daily. He doesn't like to talk about it, but it seems to have affected him as far as his libido goes in that he has absolutely no desire at all. I told him I am sure this is still an adjustment period and may take time, but he doesn't seem to want to talk about it. The dr. had told him that this could be a possible result from surgery. I never push on talking about it because I do love him and I want him to focus on feeling well mentally and physically first, but I am sure this has also affected his mental state. Anyone else going through the same thing and have any advice?

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

MB

MB,
First off, I am so sorry for what you and your boyfriend are going through...it is really hard for partners to help us when we are going through our illness, changes and failures...you can love and support us but you have no real way of taking away our pain...we must do that ourselves...he is going through identity issues, recognising his own body and how it works...his dissappointments about his failure to heal and get healthy and the finality of his life with an outside bag...it is so hard to deal with all of this, especially when the choice is not your own and you have lost control, have leakage issues, and are facing a lifetime full of this...be supportive but understand that he has to talk about it to excorcise it out of him...the touching the abdomen constantly is often part of it...checkin constantly for leakage, feeling the irritation of the skin etc...I have a k pouch and do it anyway and all of the time...hubby worries every time that he sees me touch my tummy because he expects immediate disaster...and often gets it.
I can't say just be patient because for some of us it never goes away and for others we have a capacity to move forward immediately...that is just a question of personality, character and how we deal with disease...
Love and encourage him and be there if you can and we will help as much as we can too.
You are an amazing girlfriend and are a wonderful person.
Sharon

He might be suffering from PTSD, post traumatic stress disorder. His obsessive behavior, fatigue, lack of libido, and change in mental health are all symptoms of depression. Many of us have had to take medication post surgery because of PTSD or depression; it's completely normal. I would encourage you to get him to talk with his doctor about this possibility.

Sue

For many the "it could be worse" theory just does not cut it. He needs to have his pity party, get over it, then move on. The trick is going through those stages. You can't do it for him, no matter how understanding you are. The fact that you are posting instead of him sort of tells me that he's still not ready to call himself an ostomate. Somehow, he needs to figure out how to come to terms with is ostomy without it being a feature that defines him.

Perhaps if you find someone here with an ostomy you think he could bond with and send a private message, they can strike up a personal relationship that is not public.

There are many ways to adjust and no real "right" way. I also think Sue has a good point about possibly getting assessed for PTSD. It is quite common with chronic illness and/or traumatic surgery.

Good luck!

Jan

Regarding what Jan said about contacting another ostomate who can maybe help - JasonPa is active in helping fellow ostomates. Send him a PM and maybe he can help out.

kathy

Sharon, Sue, Jan and Kathy - thank you all for your support and suggestions.

There are drug companies that will give prescription medications for free if you can't afford your meds. You just need to contact them and ask. Maybe your boyfriend can do the same with whatever bag company he decides to go with.

-Roni*

http://www.ostogroup.org/

This is a non profit group that accepts unopened ostomy supplies from people like us that donate them after take down. They in turn give them to people in need and all it costs the person receiving them is the cost to ship them to you. They were very easy to work with when I sent my left overs.

There might be other places close to your home like the visiting nurses too. It also looks like there are others if you google.

I'm happy to volunteer to be an ostomy buddy - JasonPA is a great suggestion since he is a man and a very active one - he is a state police officer and plays hockey. But, if your boyfriend could benefit from another friend, please don't hesitate to contact me. I've had my ostomy since 2001 and the pouch came out in 2003 (mine failed because of chronic pouchitis).

I have some Convatec pouches and wafers still left over. I don't recall the item #s, but the bag is the velcro drainable clear one and the wafer is the one that you cut to fit. Let me know if you're interested and I can ship them to you in a non-discreet box.

Hi KarBear-
Thanks for the offer. My bf does use the drainiable pouches and the cut to fit wafers so it sounds like those would work. You can private message me or e-mail me at mbd3456@aol.com to discuss further. Thanks so much.