Do you still have fun?

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ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
   Posted 1/16/2009 12:23 PM (GMT -6)   
I was wondering does anybody have fun despite having UC? I decided I"m still going to try & have some fun, but I'm always worried. Maybe going out would help me take my mind off this a little.
UC: Lower Left Diagnosed in July 2005
Remission
 
Azathioprine125MG
Colozal 750MG 6 pills a day


 


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4192
   Posted 1/16/2009 12:25 PM (GMT -6)   
Yes, I do. =)
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa; Canasa; Viactiv; Metamucil wafers; multivitamin; sublingual allergy drops


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/16/2009 12:40 PM (GMT -6)   
I try to but it seems that it's been awhile since I've REALLY had fun. I'm terrified of going to the beach or out on a boat for obvious reasons.. I can't do the whole "dinner and a movie" thing, unless the movie comes first.. I can't take my dog on long walks because I'm afraid of being too far from my apartment door. Just to name a few. So really, I know I'm missing out on a LOT of things. But I do try to have fun in other ways, even if it's just sitting at home playing video games or something (which I do a lot now...)

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


ucwarrior
Regular Member


Date Joined Jul 2008
Total Posts : 298
   Posted 1/16/2009 12:43 PM (GMT -6)   
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.
Diagnosed w/ Ulcerative Colitis in 1995
32 years old
Living med free  
Currently in remission  


UCMommyof2
New Member


Date Joined Mar 2008
Total Posts : 19
   Posted 1/16/2009 1:01 PM (GMT -6)   
What? You don't have fun racing to the bathroom?? ;-)
28 yr. old Mother of 2 in NY
Diagnosed in 2007. Currently in remission.
Family history: Mother with Active UC, 30+ years on Remicade treatment.
Flare-ups during pregnancies only (so far).
Controlled: Prednisone, 40mg/ed. for 30 week @ time of diagnosis.
No maintenance drugs.
Supplements, Fiber, Probiotics


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/16/2009 1:05 PM (GMT -6)   
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.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/16/2009 1:06 PM (GMT -6)   
I didn't really have any desire to get out and "have fun" at my sickest. Worrying about bathroom availability, stressing out and feeling crappy... just wasn't worth it to me.

On the other hand, once I had symptoms under control I started to get out more and now that I've been mostly in remission for a long time, I pretty much go and do whatever I want.

So maybe the question needs to be what types of fun, relaxing, recreational things can be done while you're flaring? But the OP's sig says "in remission," so maybe I'm misunderstanding.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 1/16/2009 1:08 PM (GMT -6)   
I don't get out too much when I am flaring, but during remission, I take full advantange of being healthy.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/16/2009 1:38 PM (GMT -6)   
You know actually when I go out and have a good time I actually feel better. I guess just the act of feeling normal puts my Uc out of mind and I tend to forget about it for a short time. I have gone out though while flaring and sometimes I will still have to run to the bathroom but it doesn't really bother me much as long as I am not miserable and having fun. I have never let my Uc stop me from getting out there to do what I want to do. Sure there are times that I thought "Oh crap! What the heck was I thinking???" :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 1/16/2009 1:52 PM (GMT -6)   
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.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 1/16/2009 1:54 PM (GMT -6)   
Sure, I try to have fun as often as I can. Even when I am in a flare I try my best to find things I can do that make me forget about it (at least for a while). I have noticed that when I am in a flare if I sit around thinking about it all the time it seems that my symptoms are much worse - if I get out and do something I do not feel quite as bad. Plus, I love people and nature and just cannot stay holed up at home. I would get depressed so fast if I did that! When I am in remission I don't worry about it at all!
Dx 2006 right after the birth of my daughter
Lialda now down to 1 pill a day!
Canasa on and off as needed
Probiotics Daily
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/16/2009 7:42 PM (GMT -6)   
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.
26 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
   Posted 1/17/2009 8:43 AM (GMT -6)   
Red,
 
I never really thought of it that way. I should try that. Most of my days is just staying inside waiting for my next Dr. Appt, just then going back to the house, staying inside & so on & so on.
UC: Lower Left Diagnosed in July 2005
Remission
 
Azathioprine125MG
Colozal 750MG 6 pills a day


 


megger
Regular Member


Date Joined Oct 2008
Total Posts : 62
   Posted 1/17/2009 9:55 AM (GMT -6)   
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 :)
Meghan
 
23 years old
Moderate-Severe Pancolitis
Diagnosed October 2008
12 Asacol (3 pills 4 times a day)
Entocort enemas nightly since Dec 2008
Daily Multi-Vitamins
Daily Fibre intake - 1 tbsp Metamucil
Protec Probiotics - I pill at bedtime


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 1/17/2009 10:10 AM (GMT -6)   
Well, I was kind of a homebody even before being diagnosed. But it is hard to go out to restaurants or movies or shopping b/c I'm always worried about the bathroom situation and I'm easily fatigued. If I'm going out, I usually eat less than normal; it puts my mind at ease.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


jones_77
Regular Member


Date Joined Dec 2005
Total Posts : 77
   Posted 1/17/2009 11:02 AM (GMT -6)   
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.

---------

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

quincy
Elite Member


Date Joined May 2003
Total Posts : 30591
   Posted 1/17/2009 11:19 AM (GMT -6)   
TK...
With the axiety of issues possibly happening and then changing your behaviour....it might be a good idea to talk to someone who can help with your perception.

Ultimately, perception won't change the "reality"..meaning that you have UC...but it can change how you react to it.



Having fun is definitely subjective....what kinds of things would to do would be motivating or fun for you?

quincy


*Heather* Status..Asacol  (3 twice daily); flaring /Dec 22, tapered to every 3rd nite/ Jan 13
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/17/2009 3:17 PM (GMT -6)   
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.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 1/17/2009 5:02 PM (GMT -6)   
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.
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/17/2009 5:12 PM (GMT -6)   
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.)
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/17/2009 6:10 PM (GMT -6)   

Life is too short not to have fun - however you can - even at home.

I am 68 - only diagnosed last Spring.  Now with help of some medications and probiotics I can pretty much know my system and what to expect.  My routine is to get up 3 hours before I need to go out or make all appointments and shopping in the afternoon.  I get everything out of the way before leaving the house.  If I am careful of eating light when out I will be ok. Usually - eat breakfast light and then go shopping or appointment and eat on way home - just close enough to make OUR bathroom.

  Oh, and I always take 1/2 Imodium when I get up - the new multi-symptom Imodium works great.  I have really bad knees and miss more walking than anything.  Hoping to get knee replacement this Spring. 

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 1/17/2009 7:18 PM (GMT -6)   
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.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


Samynic
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 1/17/2009 7:40 PM (GMT -6)   
thank you so much jjc2007
22 years old
Diagnosed with left-sided UC June 2005
First colonoscopy December 30, 2008- dx'd with Pancolitis

Have taken:
Cortifoam, Sulfasalazine, Cipro, Flagyl, Codine, Hydrocodone, Roxicodone, Canasa, Aloe Vera Juice

Currently:
Asacol, Dicyclomine,Zoloft, Presnisone, Calcium, Vitamin D, Zantac, Flintstones Vitamins with Iron


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/17/2009 9:50 PM (GMT -6)   

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.  


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


ToughKicker
Regular Member


Date Joined Sep 2005
Total Posts : 218
   Posted 1/18/2009 6:17 AM (GMT -6)   
I have to say Martial Arts, I haven't been to Taekwondo class in awhile and I should get back in it, it's my escape. I do plan to train in Jiu-Jitsu & Muay Thai & join a gym. Since I'm still a hyper person I need to control my energy. It makes me feel I can survive in the world.
UC: Lower Left Diagnosed in July 2005
Remission
 
Azathioprine125MG
Colozal 750MG 6 pills a day


 

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