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What are your weird tips and tricks for living with UC?
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Ulcerative Colitis
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MangoColitis
New Member
Joined : Jan 2016
Posts : 10
Posted 1/28/2016 12:00 AM (GMT 0)
Based on my own experience and from what I have read, people living with UC seem to have a range of odd and unconventional tips for living a normal life during flares (beyond diet and meds). It would be great to get all these together. Below are a couple of mine. What tips do you guys have - can be related to anything. I know you guys must have a bunch of weird things that you do everyday or products you use that help you cope with UC
Dealing with anxiety of going out:
I have been terrible at this - when ever I leave my house even for a small walk I get a ton of anxiety which I think increases anxiety a ton. One thing that has helped a ton in terms of piece of mind and sparing my clothes is wearing diapers whenever I go out. HUGE improvement in piece of mind - its an ackward stigma to get over but definitely worth it. I have also found that listening to music and applying pressure to my butt (like sitting down really hard on a ledge) help ease urgency and need. Finally, planning helps a lot: knowing where the nearest bathrooms are and what my backup plans are help a lot. That being said I dont really go out a lot because I just dont have the butt stamina to be out very long without needing to go urgently.
I havent used it yet, but a buddy recommended carrying this card that said like "URGENT I NEED TO USE THE BATHROOM" and you could just flash it to store owners or people in a long bathroom line and cut the line.
Bathroom Buddies:
When I get really bad I use Charmin with aloe and pampers sensitive baby wipes. Really helps with lowering irritation. If thats not enough I take a hot epsom salt bath and use baby rash cream (one or two applications usually calms down irritation).
For washing my hands I use Jergens Extra Moisturizing soap - it really helps not dry out my hands when I wash them 25+ a day. Corn Huskers lotion is also great to help when your hands are already super dry.
Squatty Potty - Obviously I dont need to put much effort in passing stools, but for when its painful or when I want to go out and feel like there is a little pooper just hanging out, I feel like using squatty potty makes it a little easier to clear out my immediate colon.
Monitoring/Logging condition:
Ive noticed that its hard to keep track of what my symptoms are and thus might give an incomplete answer whenever I talk to my doctors. So I have been monitoring the times I have a BM (gives me a much more accurate count which I was quite off before I started diligently logging it). I just do this in the google Keep app on my phone My next steps are to log what I eat that day and general consistency of my stools. This is important for me since I have been completely unable to control my flare and have yet to find any food/drink that may affect me. How do you guys monitor your conditions? Do you log it?
General Piece of Mind:
Humor and being
open with friends/family is my greatest weapon for keeping my sanity. I cant emphasize that enough, without their support I would be in a much worse place. Its sometimes ackward to bring up, but once you've popped that bubble it feels much better. That being said surgery is definitely a possible certainty for me - however what I have not found yet is a great semi-colon joke relating to surgery. Any jokes?
Old Mike
Veteran Member
Joined : Jan 2007
Posts : 4171
Posted 1/28/2016 12:27 AM (GMT 0)
Don't fly if you can help it.
Buy TP in huge economy packs.
Keep high quality napkins in car.
When driving know all bathrooms, located on your route.
Keep newspaper in car just in case.
Don't eat Whoppers.
Anal abscess, use sitz baths/Hot Hot Hot, and antibiotic cream. Hopefully to avoid emergency surgery.
If you wipe yourself raw, antibiotic cream, and or prep H.
Also remember that a scope is a medical instrument with an A Hole at both ends.
Old Mike
quincy
Elite Member
Joined : May 2003
Posts : 33769
Posted 1/28/2016 1:16 AM (GMT 0)
and use rectal meds...lol.
q
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 1/28/2016 1:34 AM (GMT 0)
Ditto squatty potty-like device (too cheap to buy one so a small bathroom trashcan with lid suffices).
When pooping, I rub my abdomen where my large intestine is, in the direction it flows, to help move things along and fully empty out. It surprising seems to help.
I'm in remission now but before I'd:
Always sit in the toilet before leaving house, when arriving in a store, before leaving store, just in case.
Keep an emergency kit in my car, a gallon ziplock bag with wet wipes, tp, and a change of underwear.
Avoid eating before needing to travel a long distance.
Purposely leaving the car radio off, the low base sounds + watery diarrhea in bowel seemed to increase urgency or at least feel uncomfortable.
Dreadsteel
Regular Member
Joined : Sep 2014
Posts : 346
Posted 1/28/2016 3:50 AM (GMT 0)
Eink e-reader +
Goodreads Best Bathroom Books
And finding a good doctor who knows what he's doing (treatment protocols,plans and regimes ).
Red_34
Elite Member
Joined : Apr 2004
Posts : 23581
Posted 1/28/2016 4:03 AM (GMT 0)
I have never worn diapers but I used to keep wet naps in my purse. I've been lucky that I've never had a major accidents in public tho I've had a few "squeakers" and when that happens, I go to bathroom (while in public places) and wipe my undies, wad up toilet paper and stuff in my undies - no different for ladies wearing pads but I would clean up first with wet naps. Also I used to keep panty shields in my purse for this very same reason. Guys can use them as well btw, as long as there is no major blow out.
WorriedUCer
Regular Member
Joined : Jul 2014
Posts : 384
Posted 1/28/2016 7:57 PM (GMT 0)
When I have bad gas I lie on my left side in the foetal position which seems to
open everything up and allow me to pass it.
I generally try to avoid grains, white bread and dairy. In a flare I pretty much stick with protein only, steamed salmon, steamed chicken etc. it's boring, but in combination with probiotics is usually enough to get me out of a flare as I can't tolerate steroids.
Early mornings give me a lot of trouble so I try and avoid them where possible. And I always know all the bathrooms on the way to a place, my brain is like a directory of toilets all over the city.
In Australia we also have an MLAK key, not sure if other places do too? If not, it's a key that allows you to
open MLAK-fitted locked toilets at any time so if you've ever had the desperate park run only to find the toilets are locked, most often this works. Plus because they're locked it's always private. I also tend to choose my jobs based on the bathroom situation. I used to use Panadeine forte to stop motility and get me through difficult times when a bathroom just was not available but I don't do this anymore as I figured I need to learn to deal with it.
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