Hi everyone,
I am new to this site but my boyfriend has written on here before. I have been dating my boyfriend for 3 1/2 years now and he was diagnosed with UC about 2 years ago. I have been living with him for the past year and a half and help take care of him when he gets sick. He is now going to have the J-Pouch surgery in February at the University of Chicago Hospital. He is going home to his parents house right after he gets out of the hospital where he can have someone around all the time. Knowing I have to work and go to school full time I can not be here all the time. Once he returns home I will be taking care of him. I was just wondering if there is any advice how to help him through the surgeries and his recovery once he comes back home or if there is any one else in my position with advise.
Thanks
Lisa

Hi Lisa,

There are lots of significant others who post on here and I'm sure someone will be along very soon to offer their advice.

I'm the patient not the carer in our relationship but from my perspective it's very important to know that someone is there for you emotionally as well as to help with all the post operative stuff. Sometimes what we go through with this surgery can make us a little depressed and and angry and I know from my experience that it's often easy to take it out on the one nearest to you so it can put a strain on a relationship.

You sound like a wonderful caring person and as you have already nursed your boyfriend through all the horrors of UC you are already equipped to be there for him after his surgery.

Take care and come here often for support and to unload. That's what we are all here for.

Shell

Hi Lisa,

Glad you came online here, very wise since your lives are about to change! We have tons of support on here from both carers and patient.

I am Mark's partner of 13 years, he was sick for 7 and recently had his surgery. Here are photos from his recent journey with all documentation. Please be advised these are graphic, and that everyone's journey is different so your partner will have his process.

http://www.flickr.com/photos/markandmegan/sets/

There are only a few things I would quickly recommend: 1) Take care of you, he will only be as healthy as you are. 2) Begin now the process of making his upcoming surgery, ostomy and stoma and everything out in the open. Make sure family, friends, colleagues are ready for the changes he is having. I think that with Mark part of what made this process easier was that nothing was hidden or stigmatized as weird, gross or negative. I felt like this was my biggest contribution to supporting him was helping him, myself and all our loved ones "educated" on it. It made us feel more proactive in his recovery instead of the recovery taking over us. 3) Be sure to get in there with him, and that first bag change -- be there, learn about it, learn how to help him by carrying the weight with him of learning all this new stuff. And be sure that you can spend alone time with him at the hospital (stay the night if possible), and establish that intimacy between the two of you. With Mark he did recovery at times at his parents house b/c I was busy with school and work myself, but he will need someone he is comfortable with to come in the bathroom and help if needed, if you can make that person you.

And also, try not to think of it as "you taking care of him when he comes home" but rather, you guys are team in recovery and you are living with this disease and recovery together. He doesnt' need taking care of, he needs a partner to be in this with him not as a patient to carer but as a family learning their new life together.

There is so much that I could say that I learned but it would be too much for this post. If you want to feel free to PM (private message) I'd be happy to chat about anything.

Take care,
Megan

Hi Lisa,
I'm sure you love your boyfriend very much, and he is very lucky to have a great person close to him as you.
You should make him feel confortable around you, and as Megan said take care of you, so you can be strong for him. He is going to need a lot of your patience and support.
Scott and I have been together for more than a year now, and we are still ajusting to different things. Once both of you are sure of what you want and how much you love each other, you will surely find the way to work things out.
I hope everything goes smooth for you guys.
Lilian(Borboleta)

Hi Lisa
There is no hard and fast rules, you know your boyfriend better than anyone and care a great deal about him. Trust your instincts and you will be brilliant.
My Husband had step 3 in November after a battle with UC. He is recovering well now thank god. The roles he need me to play was supporter, organizer and researcher.
Remember stay postive (something I didn't alway manage)and theres always light at the end of the tunnel
Wishing you both health and happiness
Figit

It is hard on both the patient and the patient's loved ones. Remember that you will feel scared, worried, frustrated, happy and sad.. just as your boyfriend might.

It's a major adjustment and you will both need to be a team. He'll need your support - both physically and emotionally - to deal with his new body image.

It sounds like you are preparing, and that is the best thing you can do. The hard part is that you just have no idea what to prepare for so just take it easy on each other and support him.