I'm afraid of not being strong enough for my boyfriend, and need some advice.
Scott is going to have his j-pouch disconnected, and converted to an end ileo on October 16, this up coming Tuesday. I have so many questions, that I don't even how where to start from.
Since last May, when he started feeling bad, I joined the site, and started studying about j-pouch, Colitis, Chrons, fistulas, drains, etc. I had very little knowledge about all that, and still don't know much ...
Scott's decision of having a conversion to an end ileo, came after about 7 years struggling with fistulas, and some other problems.
We have been together only for 11 months now, so I really don't know what he's been through all that time. I only know he made his decision based on what he's been through, hoping to have his life back on track with the end ileo, and I'm going to support him on that.
I guess, I'm open to any kind of advise on how to help him, what to expect from this new fase, or any sort of things I should know about.

Thank you,
Borboleta

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

Hello,
I just wanted to say that you should look at some posts from JasonPA or maybe send him a PM. He went to an end ileo a few months ago and has been really happy and feels great. Hopefully you'll find some helpful info.
I hope Scott's surgery goes well.

Hi Borboleta,

I'm sure you are being strong for Scott...Just you guys hang in there. I agree with Pixie that there Jason PA, Shell, and CMKbirdlady have all gone to perm. ileos and could help you guys out.

Good luck to you both and looking forward to a future post about his improved health

Megan

Thank you so much girls!
Tomorrow is Scott's surgery. He is going to be the first one in the morning. Please pray for him, doctors and nurses that are going to be taking care of him.

Borboleta - How did Scott's surgery go??? Is he doing okay today?

Yes, I am one of the posters here who went from a j-pouch for 17 yrs to a perm ileo. I think being a guy will be easier, 'cause guys are used to having an appendage in their crotch.

I recommend that he logs onto this website and reads and posts here. Its such a great comfort to talk to people experiencing the same thing and understanding the oddness of it all.

I mean, where else can you go to talk about the things we discuss here.

The best advice I have is to experiment with lots of different appliances until he finds the one that fits his lifestyle and body shape/size. There are lots of choices so hook up with a good ostomy nurse who can give Scott guidance.

It takes the body a couple of months to adjust to having things rearranged. But once the surgical site heals its just a matter of learning to change the appliance and have a system that works for your personal style.

I love the fact that I can eat anything I want now! I'm also more comfortable on outtings because I don't have to freak out about where the toilet is located. Tell him that immodium should stil be his friend to regulate the output and he should be able to have a pleasant 8 hrs sleep without soiled undies. That's another HUGE plus, no soiled panties

Give him support by focusing on how many improvements he makes and how great he looks. Wearing a bag doesn't make us any less sexy. I still look the same to all my freinds and family. If I didn't tell people I was wearing a bag, they would never know.

Be sure to read JasonPa's great posts on how to do a proper appliance change.

Good luck to Scott. I wish the very best for your both and a speedy recovery to him.

Cat

Scott's surgery went really well today. It was a 4 hours surgery approximately, and he got to his room at around 5:00 pm. He was talking, and doing well. He is very weak still, but I am very optimistic about his recovery.
It's interesting, but after a while I could not see any of the tubes that are coming out of his body, or anything else that might make him look different. I could only see him and his beautiful green eyes. I love him so much, that the bag will never bother me, or make him look less sexy for me.
Thank you all very much for your support. This site is really great, by the way Scott is here on the site too.

That is excellent news that he is doing well. You sound really like you are doing well also.

Best of luck in the recovery

Hope all went well.. You have my home number and if you anything just call! Stay strong!

Scott is still at the hospital, and very weak. He's been having a lot of nausea. Any advice for that?
Today was a little better day for him. He could go for walks (5 times), and ate his first bowl of soup. His bag is already working, but he's lost a lot of weight.
His parents, and I are there as much as we can. This weekend we got some people visiting us, which was encouraging. I'm trying to be strong for him, and I leave my crying time for when I'm driving back home. It's really hard to see him like that, and I miss him close to me. I just hope that after he gets better I can have the Scott I first met.
Keep praying for him, and thanks once again for your posts and support.
Lilian (Borboleta)

Lillian,
Just wanted to send you warm wishes as Scott recovers. You WILL get your Scott back the way he is supposed to be - happy and healthy. The best moments come when you first hear him laugh freely and openly and when you see him sleeping peacefully with no pain and no problems. Trust me....your heart will burst with joy in those moments.
Take care of yourself - having a good quiet cry is a great way to cope in the meantime - you are a great person and Scott is so lucky to have you.
Keep us posted and we look forward to hearing about you guys celebrating soon!
Nicole

quote:

Yes, I am one of the posters here who went from a j-pouch for 17 yrs to a perm ileo. I think being a guy will be easier, 'cause guys are used to having an appendage in their crotch.

Wow. I'm not even sure if that's funny

I hope your boyfriend is doing well and adjusting well to things.

Scott is already out of the hospital. He is going to stay with his parents until he is stronger, and go back home. He is starting to eat a little better, but still having nauseas. He had eggs today.
Meanwhile I'm going to school full time, and work full time, which has been a little too hectic on me.
How long would things take to get back to normal? Are the first weeks out of the hospital really the worst ones? I'm trying to be there for him as much as possible, but I also think, I should give him some space right now. Do you guys think this is the right thing to do?
I'm struggling not to get depressed, but sometimes it's hard ... I'm trying to be strong, and help him. He surely needs more of me now, than I need him. Maybe not, but this is the way it has to be for now.
Lilian(Borboleta)

Barring complications, it should take several weeks to feel a bit better.

Have you asked him what he wants? Whether he wants you around or if he needs space? This is so individual, I think all you can do is ask him. Then, of course, he'll give you an answer which may be a completely different answer from tomorrow's answer. If you take good care of yourself, you'll also be taking good care of him. I'm sure he really appreciates you being there for him.

Depression is part of the game. So if it gets too bad for you (or him), it might be time to talk with a doctor or therapist. But then again, it might just be an off day.

Good luck with your journeys.

kathy