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Hi,

My name is Riley and i've been dating my girlfriend who had UC for 9 years. Her story started back in 2008.

In her last year of high school she was diagnosed with Ulcerative Colitis. After many attempts to get her into remission with Remicade and Prednisone it was clear that neither were working. The decision was made to operate using the standard 2/3 step procedure.

2 years out of high school she went in for part 1/2 of her procedure: the total colectomy and construction of the j-pouch. She had an ostomy while allowing her insides to heal and prepare for part 3 of the procedure (the j-pouch reversal) which happened a year later.

Things did not go so well for her with the j-pouch. For over two years constant blockages occurred, some which she could work out on her own and three or four which sent her to the hospital requiring scopes to clear the blockage.

In the past few days she has been hospitalized again due to a blockage, but this time the scopes didn't work. This required surgery. They found that the j-pouch had ruptured and had to remove it and revert her back to an ostomy. There is very very little chance that she will ever be able to have an internal pouch again and that the ostomy will be permanent.

She had found the ostomy very difficult the first time she had it and managed to get through it knowing that it would only be temporary. Know i do not know how she will take the news that it will be a way of life.

I want her to know that i will never leave her and that we are going to get through all of this together.

Has anyone had this experience of j-pouch failure? And are there any couples who can offer some advice on loved ones supporting the patients/life with a permanent ostomy.

Thanks for your time.
Riley

Replies sorted oldest to newest

BillVBillVMember
Riley, you are to be commended for being there for your girlfriend and she is very fortunate to have you. While my situation did not involve a medical emergency, a serious medical condition made it necessary to have my J pouch removed. I had similar feelings regarding an ileostomy (quality of life issues) and was fortunate to have a BCIR (very similar to a K pouch) procedure. This might be worth exploring as an alternative if the ileostomy does not work out for her. Either of these procedures can be done for people with ileostomies. I wish the best for the two of you.
BillV
mgmt10mgmt10Member
Riley, you are an awesome boyfriend. She's so lucky to have you help her through this. I don't have any real advice to give about living permanently with an ostomy but her knowing she has your full support will help her tremendously I'm sure. I had the ileostomy for only 4 months. It was tough but I also know deep in my heart that if my j pouch fails me tomorrow I would be okay with the ostomy. I would probably have to kick and scream and have a hissy fit first to get it out of my system but I know I could move forward. Especially if I had great support from a loved one. Best wishes to you both.
mgmt10
Jan DollarJan DollarModerator, RN, retired
Riley,

I also commend you on being so supportive. She will adjust, as she is older and more experienced now. Yes, she will feel like she is "damaged goods" and may even try to push you away, thinking she is saving you from feeling that you have to stay with her. Don't take it personally, because she will be working through a lot of stuff. She may or may not be a candidate for a continent ileostomy (Kock pouch or BCIR). Since she had a pouch rupture, that means peritonitis, so that really alters her internal anatomy and greatly increases internal scarring. While you can suggest that as an option to explore, try not to imply that she definitely has it as an option (plus, there are not many surgeons that do them).

If you can just be there for her to listen to her, that will be a big deal for her. She will need someone who will be a shoulder to cry on, more than someone who can solve her problems. Once she is done grieving her loss, you can talk about what next. Be sure to talk about things you two will do together once she has recovered from this. Eventually she will see that you love her for who she is, not how she poops!!

Again, cheers to you for being strong for her.

Jan Smiler
Jan Dollar
L L.DLMember
Riley,

You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to help.
My heart goes out to both of you, I myself went through emergency total colectomy 3 weeks after giving birth to my daughter, I was 20 years old. It is now,my fourth time wearing an ileostomy, and it still is difficult for me at moments to accept.
You need to understand that she will be going through body imaging issues, having a hard time figuring out what to be able to wear. She may not want to socialize for a while. Like the others also mentioned, she may even try to push you away. You will need to adjust just as much as she will. Try to do the things that interest you both. Give her the space she needs and when it gets a little hard on you, do something to distract yourself. It won't be easy, and it will take some time to adjust.
Keep yourselves well informed about what is out there, and what options may be available to you. Depending on were you live things can be very different, and doctors work differently.I sure learned a lot from this site and would of done things differently would I of known.
So don't ever feel alone there is a whole family out here,that can offer a word of comfort. I wish you both well,and your love for one another will see you through.

L.Dl
L
L L.DLMember
Riley,

You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to help.
My heart goes out to both of you, I myself went through emergency total colectomy 3 weeks after giving birth to my daughter, I was 20 years old. It is now,my fourth time wearing an ileostomy, and it still is difficult for me at moments to accept.
You need to understand that she will be going through body imaging issues, having a hard time figuring out what to be able to wear. She may not want to socialize for a while. Like the others also mentioned, she may even try to push you away. You will need to adjust just as much as she will. Try to do the things that interest you both. Give her the space she needs and when it gets a little hard on you, do something to distract yourself. It won't be easy, and it will take some time to adjust.
Keep yourselves well informed about what is out there, and what options may be available to you. Depending on were you live things can be very different, and doctors work differently.I sure learned a lot from this site and would of done things differently would I of known.
So don't ever feel alone there is a whole family out here,that can offer a word of comfort. I wish you both well,and your love for one another will see you through.

L.Dl
L
skn69skn69Member
Riley,
One word: Girlfriends.
You are a fantastic guy and I hand it to you for being so loving and supportive but she is going to need her female support group too. Sisters, girlfriends, mom or aunt or whoever it is that she calls when she has a problem with you. (yup, us girls call each other when the guys get on our nerves)...I love my hubby but no matter how often he rassured me or showed that he desired or cared for me the bottom line was that I needed my sisterhood.
Yes, to group therapy, especially if it is all girl. Yes, to loving and support but do not forget that good ol'fashion laugter is the very best medicine.
She needs to keep laughting through all of this, feeling like life is not over, that this is not all 'that serious' but just a stage in her life and one of many, many others.
Make sure that the ostomy is well placed for clothing and dressing and find out what kind of lingerie that she can wear to minimise its appearence.
She may just surprise you and discover that after all of the j pouch pain and suffering this is a relief and that she can finally get on with her life.
I wish you both a lot of luck and love
Sharon
skn69

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