I've recently started dating a really great man, 39 years old. He has told me about his UC and the surgery he had to remove his colan, as well as showed me the scar...a ileoanal anastomosis (j-pouch) as I understand it from researching it a bit. He has told me that he has to watch his diet and he also has a alergy to wheat. He is on a great deal of medications and dietary supplements from what I have noticed. He does seem to spend a great deal of time in the bathroom and goes quite frequently. I can understand this given the drastic nature of the procedure. Also, this type of problem existis in my own extended family, so I am somewhat famaliar with it.

He seems to me to be a bit cautionary about being intimate and maybe feels embarrassed or that he is unworthy of being cared about, or even loved because of what he is going through. I might even say that he may even use it as an excuse to keep people (women) at a distance. I really like this man, and have for some time now. I've told him that we all have medical problems that we all have to deal with, and I am no different. I want him to know that I am understanding and supportive of his health, both physical and mental. I know that he has being dealing with this for a long time before I came along, and will deal with it for the rest of his life and my presence will not change that fact.

Does anyone have any suggestions for what I can say, or do, or not do, or not say to help let him know that I am there for him and maybe make it easier for him to open up to me?

Is there anything I should know about when being with someone with this condition?

Does anyone have any suggestions for what kind of foods I should stay away from if I want to make him dinner, so as to not irritate his condition?

Any and all suggestions and/or comments are greatly appriciated.
Thanks

Welcome aboard Bobbin,
You sound a lot like me, when I first started getting to know my boyfriend's condition. This site is going to be really helpful, and you should read as many posts as possible. I'm not an expert at all, but I've got to know a lot through others people's experiences here.
As far as his diet, there are a lot of glutten free products out there, such as brownie mix, bread, pancake mix, and even pasta. You should look for them in a local health food store. They taste really good, in fact just like regular products. Sweet potatoes are also very healthy and tasty.
How long have you been together for? I think you should get to know each other and the most important thing is for him to be confortable around you. It might take some time though. My boyfriend and I have been together for a year now and we are still getting many things adjusted. This goes just like in any other relationship.
You might want to PM Megan (Mark and Megan), as well. They've been together for a long time, and she has helped me a lot with her posts and PM.
Meanwhile if he is healthy now, don't worry too much. Get informed and have a lot of fun together, cause this will bring you guys closer.
Lilian(Borboleta)

Hi Bobbin,

I concur with Lilian that with time and getting to know him will be best way to bridge the 'UC' gap.

Mark has been sick for 7 years, and recently gone through the same surgery as your guy. We've been together for 13 years. You know, the same thing I mentioned to Lilian is that you need to let him know that you are okay with 'POOP' and that you want to know about how his journey has gone. The main thing I've noticed all these years is that there is some something that makes us keep chronic disease a secret.

It took Mark and I years to bridge this gap where he accepted, I accepted, we accepted, family and friends accepted his disease. And the best way we found was to be honest about our life, his health and our struggles. This left us very VULNERABLE because it meant there was a problem and that we might need to rely on others in a very real way (in a way that shows you what 'social support' really means).

A big way for us to bring people in and to help Mark accept his health, was to not hide it, and one great tool we used has been this photo blog of his surgery and recovery. If you peak at this you might get some bits and pieces for conversation starters with your boyfriend. Of course, his journey was his own, and Mark's is his so everyone is different... http://www.flickr.com/photos/markandmegan/sets/

As for food, be aware about trying to help him with food. If he struggled like Mark for many years with UC, he might have some UC food issues because for so many years food was often an enemy (though it was the disease mainly, food was always what Mark blamed for having a bad night..it was like if he didn't eat that dish again then he won't get sick again, a denial type coping technique). Plus, for many years, people didn't understand the disease and would blame Mark for being sick and say it was because he ate this or that. I think for Mark's loved ones, food is a way to try and 'fix' the problem because the health problem is not as easy to fix. -- Don't get me wrong food is really important to be healthy with UC and/or the jpouch, but may be a sticky issue for you to 'fix' for him.

So now, Mark's biggest pet peeve is now in recovery his family will ask with everything, 'Can you eat that', 'should you eat that', 'chew your food really well'.'can you find something on the menu to order?'...If I were you, I would approach more from what are his favorite foods, and learn through a positive approach. Now, with that being said, definately not all UC people have an unhealthy emotional relationship to food like Mark, but I do pick up that food for others can be a source of emotion - So, just learn from him about his relationship with it.

Most importantly, I would think like Mark, he wants 'normalcy', but he also wants to be embraced and respected for being a survior.

I've rambled (sorry about that). Feel free to PM if you ever want to chat --
Megan

Hi,

My husband doesn't have UC and he isn't able to eat yet, so he and I will have to cross that bridge when we get there, but I can probably give some advice about how to be supportative of your new guy... Talk and be open about it but don't focus all the time on his condition, sit have fun watching each other's favorite tv shows, laugh at silly jokes (when he falls asleep draw a smiley face on his big toe with a sharpie marker ... and when he's really self concious about the scars or wondering why you stick around - look him in the eyes and tell him you see past all of that and you like/love the man your with; the scars and the illness don't define the man. He might constantly ask you why you bother with him, or that you should find someone whose stronger or whole or something like that but just keep reassuring him that you still want to be with him, and let him know that you'll keep reminding him of that every time he asks. Since his surgery my husband has told me several times that I should be with someone who is healthy, and doesnt have scar, etc. Everytime he says that I just give him a big kiss and tell I don't want anyone else and that I toke the vow 'for better or for worse...' very seriously. Most of all be patient and understanding.

I'm dangerous with sharpie markers... *giggle*

He's lucky to have such a caring person.

Megan,
So well said. So many people are giving advice on food and if I do I always state that everyone is different. Some even have said that raw vegetables should be O.K. (not for me), only soft steamed vegetables, canned soft fruits, easily digested. Food is still my enemy even after Jpouch and I just hate it when I see doctors or nurses say that for the most part once the colon is removed you should be able to eat anything. I am 52 and single and for me it is difficult to try and think about dating with the constant struggle but will try again. It seems like our society is based on getting together to eat with one another. Enough said. I love this website. It sure helps me knowing there are others that have the same issues. You sound like a wonderful person and your man is a lucky man for sure. It can also help to keep a constant food diary with what was good or bad after eating it but with all the additives in fast food or restaurant food it becomes to difficult to figure out unless you cook at home. Best of luck. Francis

Thank you for your honesty bobbin. I am 37 single and can completely identify with your boyfriend's struggles.

how far is oregon from utah?
we need a matchmaker on this site. LOL
we have ostomates.org, where's there a j pouch dating service? i still say we should be in the member directory by state so we can find friends and support closer to each other.
we are normal as far as i see when i look in the mirror, scars can be from anything. lots of people have issues with gas, guys who drink too much beer belch. it's called LIVING YOUR LIFE!
Good luck to everyone. You all deserve love and understanding.

He is so lucky to have someone as understanding as you. Really, your compassion and caring is incredible. I always had a hard time breaking the ice about my condition with boyfriends. I knew me and kurt were meant to be together when he cracked jokes about it. It made me comfortable with it, knowing that he wasn't embarrased about it. It did take a while for me to get completely comfortable though. I'd say it took me about 5 months before I could go to the bathroom on the same floor as him. Now, I can go with him in the next room over, we talk about it all the time, he takes care of me, etc. Let him set the pace on what he wants to do. When he's ready, he'll let you in. Just give it time. I'm sure with a girl like you it will be no time at all

wow he is very lucky to have someone like you this disease and others have ruined marriages and such thats great you care so much my advice to you is give him time be patient and let him know that going to the bathroom is ok and as far as sex being sick for so long some of us just don't have a desire.

Before I had surgery I never wanted to and I was a newely wed now I have other issues and if my wife where to touch me I push her away so I know basically what he may be going through so just give him time he will let you know when he is ready just be patient .

Hi, my name is Tina. My husband has alot of medical problems...we have only been married for a year now, he too, had problems with intimacy due to his condition. He has gas really bad and can't help but pass it all the time. I love him regardless...it did take time for him to realize that I loved him no matter what and that it did not make any difference in our relationship. I never act as though I notice when he does it and usually don't anymore. As far as the diet goes...ask him what he can eat...look up the condition on the internet and see if there is a special diet for that...my husband has gastroparesis and hypoglycemia...one diet is high in fiber and the other will kill him if I feed him fiber! I am up in the air with that one...but it doesn't affect my love for him and he knows that now. Give him time and love him through it...it will all work out. Brag on him daily...that somehow helps Todd not be so negative about the other. I tell him daily how much he means to me and all the things that I love about him...now we smile when he passes gas after sex...that means it was good! Hope this helps a little! You are not alone in this ordeal.

How does a woman manage to have sex without leaking? You've either got to focus on keeping 'clenched', or let yourself go and possibly have an accident?

How lucky is this guy that you care so much. How hard it must be for you that he seems not to get it. He gets it but he's AFRAID. Dennis and I are at almost 20 years and he's been sick (in the beginning not like it's been since the damn surgery) our WHOLE marriage and still sometimes, doesn't get it. (Crazy fool told me if I need something outside the marriage- he'd understand - in divorce court maybe..... PLEASE, I go thru all this and can't control myself???????)
I think when someone goes thru this and still spends so much time in the pot and perhaps not quite the 100% he thought, he feels not worthy. Just don't go anywhere. Don't get shocked over any noise or smell. They are way more sensitive than you are to it. I can't tell you that it will be quick or easy for him to get it but if you don't go anywhere, he'll get tired of trying to make it difficult for you to get close. PATIENCE. You've care for quite a while, what's a little more time.

Oh yeah- let him lead on the food. I used to sometimes think Dennis was just being stubborn but have come to see that he really is the only one who knows what works for him (almost nothing gosh darn it).

I wish you luck and lots of love in this relationship. Sometimes, I need to remind Dennis that what we have now is way better than our other alternative (which in his case is dead).

Oh yeah- laugh about the gas. Dennis's comes from a bag (and he misses not being able to have a real fart) but sometimes, it's still just funny.

Love and a sense of humor can conquer a heck of alot!!!!

My dx of UC came 4 months after I got engaged. My first two surgeries were in the 6 months before our wedding. Needless to say, I threw out the "if you don't want to deal with this you can leave" speech once or twice. He stuck around, God love him, but a few more times over the next few years I made comments about him not signing up for this or if he wanted to leave, etc...

Finally, about 3 years in (just before I decided on the ileo) he got really, really mad at me. He asked me if I would leave him if the tables were turned. I said of course not, I loved him and it wouldn't matter.

What he said next floored me and ended the issue for good. He asked me what made me think I was a better person than he was and did I really think he would want to leave? I realized that largely, I was using those statements to make myself feel more secure and didn't realize the impression or impact they had on him. It's not something we ever discuss any more, it's just understood. We're both staying, good and bad, no matter what.

At least until our 50th anniversary when we agreed that if anyone else would take either one of us, we'd be free to leave