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Ulcerative Colitis
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Posted 11/8/2015 6:24 PM (GMT 0)
Hey everyone, I need some advice! I've been dealing with ulcerative colitis for over a year so I am trying to find a medication which works for me. I was out running some errands today at the mall, standing at a booth talking to somebody about my cell phone. I got a cramp and tried really hard to hold it but ended up having an accident right there! Thankfully I was wearing black tights, had a long bag and a somewhat long sweater on, but right in the middle on my transaction I had to excuse myself to run to the bathroom to clean myself up as best as possible. I ended up having to go back to the booth because I left my wallet there and my phone. I was trying not to panic and keep calm. I rushed home where I just started crying and had a panic attack. Has this ever happened to anybody else and if so, how do you deal with it? I am getting so frustrated and tired sometimes with having to live my life in fear of having an accident in public! cry
Posted 11/8/2015 6:53 PM (GMT 0)
Hi and welcome! Sorry you have to be here though...accidents are definitely part of the deal with having IBD. I carry a change of bottoms (pants and undies) in an emergency clean up kit that also has wetwipes and a small towel for drying off after using wetwipes. If it's really bad I don't leave the house, I've been housebound many times for yrs at a time since getting sick, sometimes it's just not worth leaving the house when it gets to be at it's worst with flares. Some also wear adult diapers or poise pads to try and keep accidents from making too big of a mess while out and about.
Posted 11/8/2015 7:40 PM (GMT 0)
Unfortunately, yeah, this happens to most if not all people who have IBD. Immodium can help (check with your doctor). The emergency kit is a good idea. I've found that wearing skirts makes clean up easier. If you wear depends and tights under a skirt, you can at least buy yourself time to get to a restroom to change without other people realizing what's going on.
Posted 11/8/2015 9:45 PM (GMT 0)
Medication:tell us what you are taking now for how long, what your diagnosis is, etc. One accident is not a reason to panic but you'll need to change something to make sure it doesn't happen again or often. Wearing a diaper is a temporary solution IMO while you are fixing the real problem.

You can use the "Profile" section after you sign in--top left bar next to Sign In/Log Off. Put as much detail as you can fit so people can reply without asking stuff every single time.

Uncontrolled urgency is a sign of high inflammation although people with IBS also have this symptom to non-tolerated food/drink and IBS generally doesn't have inflammation. Some of us lucky ones have both UC and IBS (like me) but it can be controlled, although everyone is different.
Posted 11/8/2015 9:51 PM (GMT 0)
I've had my unfair share of accidents (several at work, several while driving, one at the grocery store, etc). Best thing you can do is get your uc under control with the right medications. I'm in remission now, and have 1 bm a day without urgency.

What medications are you on, what have you tried?

Carry an emergency kit, Imodium helps, eating lightly before going out helps.
Posted 11/8/2015 9:57 PM (GMT 0)
Don't let this disease keep you homebound. Yes accidents are awful but not going out would be so much worse. Yes to emergency kit and even depends. I did them for awhile. I will not be locked up.
Posted 11/8/2015 11:16 PM (GMT 0)
I can totally relate. Having them/near misses pretty frequently now. My anxiety increases dramatically when I'm in the car, even if I've calculated my trip giving me time before my next poop. Started wearing Depends at certain times. There ain't nothing sexy about Depends:(

If it helps wear them to work/school and change to regular undies/use pads if you can manage to get to bathroom on time. Then put them back on for the drive home.

So sorry you're part of this club.
Posted 11/8/2015 11:18 PM (GMT 0)
Sounds like you have a high level of inflammation that needs to be addressed. When I was flaring badly and had to go out, I would wear adult diapers. What meds are you currently on? What are you doing to get the inflammation under control?
Posted 11/12/2015 3:29 PM (GMT 0)
So sorry you're going through this, katelyn. I've been through it, too. I still live in fear every single day because I'm traumatized by all those accidents I had. When I was having them, I went ahead and got Depends Silhouettes, extra absorbency. I tried not to let the shame about wearing them get me down, because what else was I supposed to do? It wasn't my fault. Same goes for you. I wish you the best.
Posted 11/12/2015 4:37 PM (GMT 0)
katelyn, you've come to the right place. Sadly, many (or most) of us can relate to an accident or a near accident. I agree with the others, firstly, you need to get the inflammation controlled. It could mean you need a second opinion if your GI isn't offering you options. Secondly, wearing something like depends can help a lot. The problem is that wearing depends is not really a solution, just something that can help if there is a major mishap. It's good to be prepared. Carry extra clothes in your trunk. Some people keep some clean stuff in their desk drawer. A big plastic bag is good for carrying dirty clothes. At the mall it's really hard, especially int he situation where you left stuff behind at the kiosk. How terrible!! I would have wanted to bolt, but yes, you needed to go back for your necessities. I am so sorry. Go to your GI and try to find medication that works for you. If you let us know what you're currently doing for treatment, we might be able to help you work through options.
Posted 11/12/2015 5:06 PM (GMT 0)
I've been in remission for over a year now, but I still keep emergency supplies in all of the car trunks (extra tp, pants, underwear, wet wipes, and a 1 gallon ziplock bag). I also keep extra tp stashed in a compartment of my wallet (looks like my wallet has a lot of money in it, even though it really doesn't lol). Old habits die hard, I guess. It's there for my peace-of-mind and the worst case scenarios that my mind conjures up when I'm stuck in traffic, or in an unfamiliar place without prior knowledge of nearby bathroom opportunities. I'm really hoping it fades after time, and it has some already. Post-traumatic-uc-flare-disorder, I guess?
Posted 11/12/2015 5:47 PM (GMT 0)
So sorry you are having accidents. I can relate. I sometimes have less than 20 seconds to get to a toilet in the morning. The thing that changed my life was liquid opium. Most GI's won't prescribe it. I take 2-3 drops when I have to travel early and it stops me from having any bowel movements.

Immodium kills me and gives me terrible cramps but everyone is different. There are other medications that control D too.
Posted 11/12/2015 5:52 PM (GMT 0)
Been there done that and l agree with all of the above
Even though Iam doing much better on the Entyvio I still have an accident every so often I still stay on the safe side and wear pads during the day and depends to sleep in . turn
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