Do you still have fun?

Yes, I do. =)

I go out when in remission but I am a hermit when flaring.

No use going to a club if you spend most of the time in the nasty restrooms and avoiding alcohol when flaring. I just wait till the flare subsides and then get back to normal activites. Just me though.

Well, definitely not as much fun as before getting IBD, but I've sure turned into quite the shopaholic the last few yrs since feeling somewhat better, plus the home shopping network came in pretty handy for times that I couldn't leave the house...although, as fun as shopping is for me, it can be quite a dangerous addiction so I've had to make a new years resolution not to shop this yr (with the exception of my birthday)...having IBD has really turned me into a home-body though, I never used to sit around at home, I was always out and about having fun.

:)

I don't get out too much when I am flaring, but during remission, I take full advantange of being healthy.

I do notice it takes me a LOT longer to recover from having fun though... Going on long shopping trips or anything else that requires lots of walking drains me physically and I'm dragging after just an hour... And partying/drinking? Yikes. If I go out on Friday night, I'm still recovering on Sunday, just feeling wiped out and achey. I used to be able to stay up for days at a time, fully function on a few hours of sleep, wake up at whatever hour and be ready to go, party every night and never feel the effects.. Now I just feel like an old lady, haha.

I do have fun. I do get picky about the food that's offered, but I do have fun. I have a friend who has Crohn's so we understand each other. Makes it easier for us.

When I was dignosed I promised myself that I wouldn't let UC get in the way of what I want to do i life! 2 weeks before my diagnosis was my wedding day and my honeymoon - needless to say I hopped up on imodium for my wedding day and it was the best day of my life and our honeymoon was a one week cruise - I was running to the bathroom constantly but I didn't let it get the best of me!! One of our ports even took us to Portland, "the city of no public washrooms"! That was a scare, but when I had to go my husband help me run around the city to find a washroom at Subway where we could buy a drink and I could borrow the key to use the washroom... My honeymoon wasn't as great as it could have been but I had a blast :)

One of the secrets to my happiness is our dog. Having an animal around brings me constant joy and it's great to have a big furry body to lean into when things aren't going well. I'm blessed to have an amazing husband and live in a place I love.

I think it's hardest when we feel like we're "missing out" on having fun. But when I remember what kind of "fun" I'd have if I coerced myself into going out when I feel crappy... it's easier to be okay with staying home.

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Female, Age 31
Left-sided Colitis, Dx'ed 2003
Remicade every 10 weeks, fish pills, Chinese herbs, D3, multi, Zyflamend

I still go out and have fun when I'm flaring. But I have made modifications.

I continued to take dance and cake decorating classes (even though I can't eat the cakes) during my last flare. I did miss a few classes, because I couldn't leave the bathroom on a few occasions. But I made every attempt to not miss a class.

I went on short hikes during my last flare, but I stopped going on day hikes. I'm not having urgency issues like before, but I don't think I'm ready to hold it in for a whole day if I have to.

I have found that going out and enjoying life has helped my Colitis. My body always feel a bit healthier when I get back home.

JM21204 said...
I find when I have a flare (every 4 months or so), most of the urgency and quantity of the issues is right when I wake up in the morning. So I just end up setting my alarm about an hour earlier and getting about 80% of the mess out of the way. The rest of the time during the day, I just make sure I know where the closest restroom is wherever I go. So overall, I don't believe it's significantly impacted my ability to have fun outside the home.

Me too. When I was flaring, I'd wait until my first bowl movement of the day before going out. (It didn't take long.)

Yes I do. I decided 47 years ago, when I was first diagnosed, I was not going to let some disease rule my life. I spent a month in the hospital when I first got hit with this disease. The two weeks before going in to the hospital I lost 30 lbs and I needed six blood transfusions. Spending most of the day in the bathroom was getting me down. Back then, as far as I knew there was no remicade, no Azulfadine. In fact the meds were limited. I was on cortisone (that's what they called it). I blew up like a balloon. One day I was sitting there on the toilet for the, I don't know 20th time, and I just vowed I was not going to let UC win. I had a rough 25 years. My UC never went into total remission at all until after menopause for me. But I still went to college, partied, became a teacher in elementary school, and just tried to have fun. It was NEVER easy and like all of you I had times that knocked me down. I then ate rice, baked fish, and canned strnged beans for a couple of weeks. I rarely missed school though. I just refused. I knew where every bathroom was on my route to and from school and I made sure my class was the best behaved sixth graders any where so when I left the room suddenly they just carried on with no problems.

The ONLY thing I would not do is go camping.......the idea of having a flare while in the middle of the woods just never appealed. But I have been skiiing, I bike, hike, walk, and jog. Now that I am 63, my fares are more moderate and less often. Don't know why. I get a colonoscopy yearly because of the cancer risk. But I mostly eat well....lots of fresh fruits and vegetables. I used to wish I had diabetes instead of this disease. But now, I guess UC is just a part of my life.

PLEASE, especially you young people, fight it......live, don't give in. Know you can get better. Because you can. It is a hard, hard disease and I think the general public is sadly ignorant to what IBD sufferers go through. Not sure the medical community even gets it. But we do here. And those of us who have lived a lifetime with this disease know there is a life worth living and having fun is a part of it. Rule the disease....don't let it rule you.

I have had this disease with virtually no complete remission for more than 20 years and I’ve had more fun than most anybody I know! I think it has given me a remarkable sense of adventure, at least in regard to things I know I can do comfortably. I’ve been to every state in the United States except Alaska. I watched a Kansas City Royals game from George Brett’s box, had lunch at the top of the World Trade Center, lived in a hotel at the Meadowlands overlooking Manhattan for eight weeks, watched an Apollo liftoff in Florida, loaned Dan Quayle my makeup for a TV interview, had dinner with Luc Montagnier (who just won the Nobel Prize for discovering the AIDS virus), cheered for General Schwarzkopf in the parade down Constitution Avenue after Operation Desert Storm, visited Disney World at least 20 times and sang with Martina McBride (well, it was the national anthem…but she was at my table). I have season tickets to National Champion Kansas Jayhawks basketball. I’ve managed to meet the last four Presidents, and went to Ronald Reagan’s inaugural ball. I played St. Andrews golf club in Scotland, after I watched Tiger Woods win his first British open, flew with Jim Colbert in his private jet, watched the Bay Hill Invitational from Arnold Palmer’s hospitality tent, had my photograph taken chatting it up with Payne Stewart, talked law on the Golf Channel, and took private long drive lessons from Mr. California. For my precious girlfriends, I host Tea at the Ritz Carlton every Christmas, celebrate happy hour around my little pool whenever the mood strikes us, take Mondays off to play golf in the summer and rent a beach house every couple of years. I’ve had sex…well, I could go on and on.

Attitude is very, very important.