Dating someone with UC

Hi all,

I thought maybe I can get some insight from this board. I've recently starting seeing a wonderful man who I would like to continue seeing. It's been a long time since I found someone like this guy, and we've gotten along very well so far and even shared a first kiss. We are both looking for someone for the long term haul.

He disclosed to me that he was diagnosed with UC when he was a young child, was in remission until his mid 20's and then it had flared, and is now taking Remicade which is working for him. He sounds like he's led a very active, full life. I'd never had known if he didn't tell me- we've gone out to dinners, outdoor activities, etc. He didn't even act like it was a big deal when he mentioned it to me.

This all came as a shock to me, but I knew some stuff about UC from my educational background. It doesn't phase me too much because I had dealt with several years of GI issues (multiple doctors and tests, finally a colonoscopy that revealed a "weird" twisted colon, and discovered numerous food sensitivities....I now have my issues under control through careful diet and probiotics). My family background has IBD and I had been tested for it, as well.

Anyway, in all honesty I am a little scared about the side effects he mentioned from Remicade (possible cancer, hepatitis, etc). And I have a lot of "what ifs" floating through my mind, such as:

Will I be a caregiver rather than a romantic partner? (This happened in a previous relationship and I was completely shut out, and am afraid of that happening again).

Is he more likely to die early from UC or medication side effects?

What if we got serious and his UC got worse and changed our relationship completely, like could never do anything as a couple?

I know surgery is one route many people go and if he ever chose that I'd be completely fine with it. One of my relatives had to go that route.

Right now I am kind of going back and forth...I see him as him and the UC as not defining him. I know I can keep seeing him and see how things go, taking things slowly. I wonder if I am picturing it as worse than it really is?

Anyway, any advice would be appreciated.

 

I was diagnosed later in life than your boyfriend, was already married and had 2 kids. But my doctors have told me that my life expectancy is no shorter as a result of this disease. I am also on Remicade, and while there may be a slightly increased risk of cancer, I don't think that should weigh too much into things. There are risks to everything, and even those who live perfectly healthly lives get sick (case in point, my mother in law has 2 siblings who have been diagnosed with brain cancer. Her brother died from it years ago-he never smoked, hardly drank, and exercised everyday. Her sister in a nun who lives a quiet life and is now battling it-you just never know what will come down the pike in life).

Everyone's flares are different. When I flare, I need a lot of help, but my husband still works and I function as best I can. I have been hospitalized twice, and of course during those times, he is full on caregiver of the kids and such. But those are brief periods of our life, honestly.

When I am in remission, we go on vacations, go out to dinners and share bottles of wine, go on day trips and weekend trips with the kids, etc. We aren't wild and crazy like we were in our 20s, but we hadn't been for quite a long time, so it hasn't changed our lives that much. The biggest change has been that I have to been a lot more aware of my health, which sometimes means I say no to commitments that are too much for me in terms of stress or whathaveyou, since that is a big trigger of mine.

I may eventually have to have surgery. My UC is severe enough that if I run out of med options, that will be the only real choice left. But we hope to avoid that as long as possible-both to allow time for other potential options to perhaps come forth, but also to allow our kids to get a bit older so if wouldn't have as large an impact on him and our family as it would right at this moment.

UC is not a death sentence. It is tough, sure, but most of us have very full lives and find ways around the limitations we do have. It really boils down to how you feel about him and how you see your life on the whole, and no one can answer that but you. I personally wouldn't base any future choices on the fact that he has UC, but you may feel differently.

No one has perfect health, and even those who do may not always. There is always something. My husband has a history of heart disease in his family and has had high blood pressure for a long time. I have finally gotten him on a good regime which has helped lower it, but I know that this may be something that rears its ugly head as time goes on. But he is my heart and soul, and whatever happens in the future, I'll stand by his side every step.

I actually read that people with UC have a longer life expectancy - they thought it might have to do with the fact that most people with UC don't smoke. Anyway, a lot of people with UC are not really "sick" all the time and some are. And with some of us it comes and goes. Even with saying that, I am really glad I am married to a wonderful guy who loves me and is fine with the fact that my life has had to be adjusted due to this stupid disease. My dad always says, just hang in there, hopefully there will be a cure in 10 years and you never know...