How do you prepare for or cope with accidents?

I'm wondering what people do to prepare for accidents.

I’m a 54-year-old man with UC (pancolitis) that isn’t responding to treatments, the worst part being proctitis, and there are days when I have to go more than 30 times a day. Obviously I don't get out much. Unfortunately, recently I have had some awful accidents in the most inopportune places including during check-in at the airport, a busy ladies room at Walmart (yes the men's stalls were full so I really had no choice), and even in my car in a public parking lot (it was worse than it sounds).

I carry an away bag with me with TP, a change of clothes, some sealable plastic bags for soiled clothes, and lotions and potions. Sometimes I wear two sets of underwear at once. I keep a receptacle and tissues in the car. I know the location of every bathroom in town, and I plan as best I can but none of that helps when you go from no warning to no hope in under 60 seconds. I just bought the “Depends” but haven’t tried them on or, worse, made a trial “run” yet. The only safety net I have so far is Imodium (Loperamide) which works really well if I plan ahead and don’t mind potential problems later. (FWIW, my doc’s office insists I use it occasionally because they say it is OK with my medical situation and because they correctly consider the risk of depression from not getting relief to be more immediate and dangerous than the potential problems with motility).

So… How do you deal with the potential for accidents? Do you wear the special underwear and if so when (just to go out, at night, always)? How well do the diapers work for this? Brand or sizing recommendations? If you take a bag of stuff with you on outings, what do you take? What have I overlooked that might give me peace of mind, if not actual protection? Any recommendations on how to prepare or, failing that, how to cope with this would be appreciated!!

Thanks so much. The idea of making the vehicle itself part of the solution is brilliant! As is the advice for wet wipes for general cleanup. Just the type of info I'm looking for!

You're very welcome notdancing...it's sad actually at how creative we have to be due to this disgusting disease and amazing that the expense of it goes even further than just the meds alone.

Some people keep a litter-box in their vehicle to aid in the same type of way as the port-o-potty, that would be pretty tough for me to use though, and since there are many styles of potty's I made sure to pick one that wasn't too too tall so that my head wasn't touching the ceiling in my van lol! I keep a blanket over the potty so when I'm loading groceries into the back (where the potty is) no one is the wiser about my potty-van hahaha!

garylouisville - I do take probiotics on occasion and eat 'good' yogurt every day, but I haven't been able to make any corralation between probiotics and symptom changes. I'm not really knowledgeable at all about the whole subject but my very simplistic understanding is that most of the organisms in the gut are mainly anaerobic and what is available in supplement form and yogurts, are by necessity of their packaging and delivery method, aerobic. So while potentially beneficial, over-the-counter supplemental microbe replacement just seems a little fanciful to me. I could be woefully misinformed though and will continue to try -- can't hurt. My doc has asked around to see if we could find a fecal transplant study to get me into (now that the FDA here in the US has messed that up for everyone) but no luck there. Of course, the numbers on FT for UC are not encouraging, but I'd try it in a heartbeat in controlled conditions.

How do you prepare for accidents? Many of us have emergency kits, myself included, available which helps some. However, the mental and emotional toll is always the real tough thing to deal with and to that I cannot offer much advice (in dealing with the emotional crushing effect of accidents: embarrassment, rage at uc, disappointment, etc.). I have a ziplock bag with wet wipes, a change of underwear, and tp in each of my cars. I say half jokingly I should include a nip bottle of whiskey in with said kit because it is always crushing when you have an accident. I keep extra tp in my wallet (looks like I have a thick wad of cash in my wallet haha), just in case I need it and I have. I've had accidents while driving, at the grocery store, at work, and lots of close calls (parked by side of road and ran into the bushes more times than I can count). Luckily, things appear to be well controlled now, the year long flareup subsided, as it's been about 6 months since my last accident or emergency dash in the woods. It's hell been there and done it far to often.

What is your Remicade dose (e.g., 5mgs a kg, 10mgs a kg) and frequency (e.g., every 8, 6, or 4 weeks)? Does remi do anything at all for you? If it does then remi can be a max of 10mgs a kg every 4 weeks. If remi has failed you then I'd consider Entyvio (pretty new biologic medication with a different method of action then remi). If you cannot get your uc under control through medication then there's always surgery. Maybe you are just in a short flareup and can get it under control, but in the event you cannot control it... many wish they had done surgery sooner and not suffered for as long.

Remicade works real quick for some, takes longer for others probably varying based on extent and severity of uc damage. You should generally know whether remicade is working for you by the time the 4 initial loading dosages are complete (either there are improvements by then or there are not). I noticed my first improvements from remi a week after my second loading dosage. I noticed much bigger improvements a week after my 3rd loading dose of remi. It has been a gradual improvement ever since.

Before remi, I was pred dependent (on it for a year) as well as having an accident every 3 weeks or so with many more close calls. I was learning to adapt and live (we are creatures of adaptation and learn to adjust) that way but most certainly hated it.

Right now, almost a year after starting remicade, I have 2 solid bms most days, sometimes 1. No urgency, blood or mucus. Close to the remission word but not quite there. Remi has worked well for me and I hope it does the same for you. Give remi some time, as by the sounds of it you are in a pretty severe uc flareup. A good day is always appreciated but healing always has it's ups and downs on a day-to-day basis (it can be crushing to have a really good day followed by really bad day). Just look for improvements over a longer term and it gives you a better trend line on, for example, a week-to-week basis.

Yup!!!! The potty-van has saved me from a lot of what would have been embarrassing humiliating moments...and yes, my husbands ford 150 work truck with extended cab also fits the potty in it quite well with tons of head room when he closes up the back seat(s) there's so much room in the back even when he closes up just one seat let alone both, the only thing with the truck is, he has to pull over so I can get out of the front and into the back, where as with the van I can just walk from the front to the back (thanks to all 4 bucket seats).

The sad thing is the fact that we have to come up with these crazy ideas (even if they do sound brilliant lol) just because of this stupid ugly disease we're all inflicted with...imagine if the whole world had IBD, how different this world would look/be and probably how much more expensive toilet paper would be too lol!

I just had this happen today. Crap-kit contains: Depends Flexfit Underwear, alcohol free-wipes, 2 zip-lock bags ( 1 for dirty clothes, 1 to dispose of soiled underwear and wipes), change of clothes, anti-anxiety meds, Calmoseptine to protect tender skin, and 5% topical lidocaine for pain. If you are slender or do not fit into Depends, there are teen-sized absorbent underwear that do not show through the barest of work-out clothes. The zip-lock bags I buy at an outdoor gear store. They are colored and keep everything discreet. I carry everything in a professional bag shaped like a messenger's bag. Looks good with a suit or jeans.
I have had this problem on and off for four months. I have had every test possible and no one can tell me why so I had to make an attitude adjustment and just "deal with it." I refuse to stay at home. I like what I do too much.
Good luck!

I am a little late to this discussion, but I thought I would add my two cents. If any of you are still struggling with this I can relate. I've had UC for 9 years I have been pooping my pants for 6 years and I am so done. It's become such a problem in my life that I am considering an ileostomy... more on that in a bit...

I always wear two extra long panty liners, not side by side but one behind the other so that my undies have a long line of protection. That way, I dont have to take off my pants, I just take off the liners. Something that REALLY helps with the cleanup is VASELINE! Before I go anywhere I put a dab of vas on TP and smear it (for lack of a better word) all around down there. If you are female you know how horrible it is to have poo in your hair. The vas will create a barrier so that you can wipe it right off. It will also protect your skin and you wont get rashes. I keep a tube of vas in my purse, along with wet wipes and liners. Something I just heard about is keeping clothes pins so you can keep your shirt out of the way (or skirt off the floor).

I have been on the SCD (diet) for 5 years and it has been the only thing that has ever given me any relief. I no longer have chronic diarrhea but even when my stool is formed I can't keep it in. I haven't tried immunomodulators or biologics but I really dont want to and I am only going to try them if I find out I have Crohn's and not true UC. I don't respond to 5 ASAs or mesalamine. And I hate the side effects of prednisone. I had moon face for two years, (went to senior prom feeling very ugly) along with cystic acne, hair loss, and psychiatric blows etc. Don't want to remember...

Having a permanent ileostomy would dramatically improve the quality of my life. I am fully aware that I am trading one set of problems for another set. But there are countless things that I would be able to do with a bag that I haven't been able to do for years. I could get a job. I could go to the grocery store without fear, anxiety, pain and several bathroom trips to clean up accidents (I never make it on time when I'm at a store and so I rarely go anymore). I could attend weddings, reunions, funerals, birthday parties, and other important family gatherings. I could go camping, hiking, biking, swimming, etc. I could go on a vacation. I could join my husband when he invites our friends over for a game or movie night instead of hide away in our room. I could go on dates with my husband.

I have a very poor quality of life. I want my life back. I want to give my husband and future children the wife and mother they deserve.

While reading the early replies to notdancing's post - it occurred to ask; Do men ever use feminine hygiene pads? The long & thin pads won't contain a large accident - but definitely help with the leaks & sharts.

[Some people keep a litter-box in their vehicle to aid in the same type of way as the port-o-potty, that would be pretty tough for me to use though, and since there are many styles of potty's I made sure to pick one that wasn't too too tall so that my head wasn't touching the ceiling in my van lol! I keep a blanket over the potty so when I'm loading groceries into the back (where the potty is) no one is the wiser about my potty-van hahaha!=pb4]

Holy Sharts! Why is this so hilarious? Besides the practical benefits of sharing, this forum often provides the finest comic relief for such private & personal conundrums. Thanks UCers.