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

I just want to let you know how amazing you are and how valuable your support for your boyfriend is. My boyfriend (of 8 years!) broke up with me this fall because he couldn't handle my medical issues. The fact that you are so kind and loving probably means more to your boyfriend than you'll ever know.

I had my colon removed in July and while my illeostomy isn't necessarily permanent, I find challenges everyday in dealing with my "baggage." It's so easy to fall into a state of depression and helplessness when you realize that you will never be "normal" in the same way others are. I have good days and bad days, and I think that is to be expected. My goal is to have more good than bad.

I am constantly checking my bag, putting a hand to it to feel how full it is (I don't even realize I have this habit until friends point it out) and leakage is a constant worry (especially when I'm out in public). I think in time it will get so much easier. Until then it is a huge adjustment-- physically and emotionally.

I'm new to this game so I'm afraid I don't have much advice to offer. I just wanted to let you know that I am touched by your level of compassion and understanding. The biggest thing you can do to ease the pain is just be there for him, and it seems you already have that down

MBD, I am also so impressed by how caring you are. This cannot be easy on you either, and the fact that you are reaching out on his behalf is so wonderful. I had an end ileo for about three years before recently having my take down surgery. I am also so lucky to have the amazing husband and father to my two girls that I have. People often ask if this illness has come between us and I always tell them that it has been challenging, but that it has made me love him more than I thought was even possible before all of this happened.

As far as adjusting to the ostomy, it is not easy. Four major things that helped me to feel comfortable were a non see through bag (like you suggested), a small bag for during the day, a band to hold it in place, and deodorizer (at least for me it smelled a lot more than with the j pouch).

I know this stuff is expensive! I actually have a ton left over. I am saving it in case the j pouch doesn't work out for me. I would be more than happy to send you some boxes so that he can try out some different sizes. Just send me a private message and we can make arrangements for me to send some stuff if you want.

Also, I found that my stuff would leak if I didn't cut the hole big enough. My stoma would creep under the wafer and end up busting a hole in the side. This would sometimes happen at night especially until I figured it out.

Ok, this is getting long. Just let me know if I can send you stuff or help any further with questions. Keep doing what you are doing...oh and it DOES get MUCH easier living with the bag! Anna

MBD,
You are awesome for being there for him. My wife has been completely supportive throughout my cancer, colectomy, ilio, j pouch, reversal and permanent end ilio.
1- get him to use the pouches that aren't see through. That makes a huge difference. I use Coloplast. No leaks yet.
2-Visit with an ostomy nurse. Getting educated is important so you understand how it all works, proper nutrition, support groups info, and proper fitting of the bag.
3- I do feel it throughout the day to see if I need to empty and you will need to empty it often but there are foods that thicken output and slow things down.
4- things get easier the more educated you get and realize how many people are in the same boat. You can google info or visit with a nurse. It sucks not to have insurance. There are retail suppliers that have programs avsilable. I hope this helps.