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Do you mostly just stay home?

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Ulcerative Colitis
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dinkydonuts
Regular Member
Joined : May 2012
Posts : 144
Posted 10/1/2017 7:27 PM (GMT -8)
For those of you with active flaring - I hope the best for your healing and that you get into remission ASAP.

For those in some form of remission - Are you as active as you'd like to be? Can you still make it across town to attend events or involve yourself in regularly scheduled activities?

I realized the other day that I seem to just stay home.. which would be OK if I didn't have aspirations to meet new people. So here I sit.. at home as usual... dreaming of a day when I can go and do things in public and not worry about toilets.
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Kulinarykidz
Regular Member
Joined : Aug 2015
Posts : 480
Posted 10/2/2017 4:00 AM (GMT -8)
During a flare I find myself pretty much a homebody. I don't even force myself to spend much time out and about unless I know I'll have easy access to a rest room.

In remission, I live a 100% normal life. I don't give bathroom access a second thought. With true remission I have one solid be a day with no surprises. This should be your goal. Whether you reach it through the proper meds or diet mortification or a combination of both, this should be your goal.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16415
Posted 10/2/2017 7:17 AM (GMT -8)
Yes, no limits during a remission. During bad flares, nearly housebound except the essential trips needed. Various stages of simmering/lightly flaring, take risks and win some and loose some (have accidents, emergency restroom stops etc).
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17869
Posted 10/2/2017 7:19 AM (GMT -8)
I stay home during a flare up. My last one was nearly 18 months and people would literally have to force me to leave the house.

Often I wouldn't eat anything for days at a time to enable myself to go to work, or events, I was obligated to attend.
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Michelejc
Forum Moderator
Joined : Jan 2011
Posts : 2845
Posted 10/2/2017 8:44 AM (GMT -8)
I'm in remission. I go where ever I want without any issues.

When I was flaring, that was a different story.
I would go to work but then come right home. Thankfully my boss's understood my issues. I was using the restroom every 15 minutes.
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newme22
Regular Member
Joined : Sep 2017
Posts : 58
Posted 10/2/2017 8:51 AM (GMT -8)
Yes I am pretty much housebound during severe flares and my partner shops for our supplies when needed. I have been flaring for 4 years now.
I am looking forward to getting into remission so that I can get out more and also start enjoying my hobbies here at home again.
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quincy
Elite Member
Joined : May 2003
Posts : 33538
Posted 10/2/2017 9:11 AM (GMT -8)
During flares, I'll be home because of feeling like crap and increased bms and butt spasming. Once Im feeling more stable.... I'm out and about.

The majority of bms are in morning, so whatever I need to do is usually in the afternoon anyway.

After over 28 years....my flares are very mild and I deal with them early. The discomfort, however can be extreme for a few days, and starts to lessen after that.
q
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imagardener2
Veteran Member
Joined : Jan 2010
Posts : 5896
Posted 10/2/2017 10:27 AM (GMT -8)
Even when flaring I would continue daily activities outside the house. I will never let this disease dictate my life. I will beat the crap out of it until it submits.

This was possibly being in denial at the time but no I never stayed home. I did have a lot of workarounds like getting up at the crap of dawn if I had a 9 am appointment. Also used Immodium tablets (liquid actually caused BM's) plus Pepto pills (ditto the liquid and chewable types=bad for me) and those little blue RX pills for gut spasms, those 3 together shut the gut down for hours and the next day no repercussions.

I also knew where every single toilet was on my way and one trick I had was to drive to Walmart (even if my appointment was opposite direction) because a walk through Walmart guaranteed a final BM, the one that would not happen at home. Was it psychological? Maybe, maybe not, other people have commented that Walmart does this to them too. Haha.

When I am super, super stressed (hurricane Irma stressed) I have worn a diaper but maybe wearing it calmed me down because have never ever needed it.

I haven't needed the Walmart walk for a couple years now and mornings are as good as they've been "almost" pre-UC.

I can't tell anyone how to handle their flare but I seriously will not let UC run/ruin my life.
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IamCurious
Veteran Member
Joined : Jan 2010
Posts : 3692
Posted 10/2/2017 1:52 PM (GMT -8)
but I seriously will not let UC run/ruin my life.

Neither will I. And I feel my quality of life will be higher in remission by avoiding mostly foods that I should avoid anyway like donuts and pizza than it would be by spending thousands of dollars on meds that force me to avoid sunlight and make me susceptible to opportunistic infections. JMHO
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UCer23
Regular Member
Joined : Aug 2017
Posts : 155
Posted 10/2/2017 7:41 PM (GMT -8)
During my current flare, I limit my outside activities and really weigh the risk/reward for leaving as sad as that sounds.

When I was in remission from my diagnosis to November 2016, I lived a perfectly normal to the point where I would say, "this disease isnt so bad"

boy did i learn quickly that this disease is a monster when you're hurting. if i can get into long term remission with a few week flare every few years, i'd be very content and feel i could return to my normal life.
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WorriedUCer
Regular Member
Joined : Jul 2014
Posts : 384
Posted 10/3/2017 6:21 AM (GMT -8)
The best thing I ever did was move above a shop on the main strip, with lots of cafes, restaurants and coffee shops literally 10 meters from my door. It's as if I no longer have UC - the worry about a bathroom is completely gone. I can go out to dinner, breakfast, even eggs and never worry as a bathroom is always less than 2 minutes away. It's been life changing!
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Albannach
Regular Member
Joined : Jan 2016
Posts : 99
Posted 10/3/2017 1:24 PM (GMT -8)
In my final flare, which got really serious for about 18 months, I struggled to keep up with life. I managed to keep on doing my job (I teach at a university), but I had to plan everything carefully. I arranged my teaching so it was all on the same day. I would fast for the day before, to minimise BMs during teaching. I would get up really early and spend a long time on the toilet trying to clear myself out. But even then my teaching days were a nightmare. I was exhausted and hungry, and was far more focused on listening out for the next BM than on doing my job itself. I wore Depends and visited the bathroom (to pass blood) between my lectures. I also did the same whenever I had to be at committee meetings.

Looking back I'm not quite sure how I managed to cope. I guess a mixture of economic necessity, and the grace of God.

My commute to and from work was a daily nightmare - lots of jumping off buses to find the nearest toilet in a shop or cafe, or running home from the bus stop to use the bathroom, and ending up late for work. Family life outside the house was almost impossible. I couldn't join my wife and kids on trips anywhere, unless it was to someone's house where I knew I would have instant bathroom access. We had small kids at the time, which meant we were largely housebound as a family.

I decided to have surgery when I was 32, as this wasn't how I wanted to be - if I had any say in the matter - during this phase of my life (and especially for my wife and children), and have no regrets about that decision. I've now got a j-pouch and love my freedom to live again. I would describe my life with UC as existing, but not flourishing. Life now is pretty much back to normal.
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