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So frustrated and tired of this bloody disease!

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Ulcerative Colitis
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Posted 4/28/2011 8:20 PM (GMT 0)
I am so very frustrated and tired of this. I had another accident today. I just left the office, and was about 30 secs down the road when I felt the first urge. There is a Wendy's nearby - another 30 secs. Just before I turned in the driveway, the urgency hit me in the most intense way. Needless to say, I didn't make it into the Wendy's. I was too scared to get out of my car, so I ending up going in my seat. Fortunately, I had the foresight to line my driver's seat with a plastic bag.

I then spent the next 30 mins sitting in the mess before I could get home. I had just enough time to clean up and then turn around to get the kids from school.

Ugh, there are worse things in life, but this sucks.

Thanks for reading my vent!
Posted 4/28/2011 8:37 PM (GMT 0)
So sorry to hear of your rotten day, that really sucks.
Posted 4/28/2011 8:53 PM (GMT 0)
Oh I'm sorry .. I am so scared of that happening I don't even leave the house durring a bad flare. Once I went to the store and it hit me as soon as I pulled out of the parking lot .. I don't live far from the store and I hate public toilets so I hit the gas and hoped for the best .. I barely made it into the bathroom so I had a little mess to clean but it wasn't too bad .. that scared me enough to never lose sight of the bathroom again
Posted 4/28/2011 9:05 PM (GMT 0)
Thanks for the support.

Unfortunately, my flare has been continuous, except when on pred - which hasn't happened since Dec. If I was to stay home during the flare, I wouldn't be able to work at all. Remicade is helping a bit - lots more formed stool. I guess the bottom end hasn't healed, so formed stool is even harder to hold - and is a much bigger mess. Ugh.

To top it of, I have such aches, pains, fatigue all day and a fever that shows up every evening. I am just so frustrated, and need a rest.

It's okay to have pity party once and a while, no? :D
Posted 4/28/2011 9:29 PM (GMT 0)
aww. I am so sorry you had an accident. UC can be such a downer. Things will get better.
Posted 4/28/2011 11:13 PM (GMT 0)
definitely ok to have a pity party... here's hoping tomorrow is a better day <3
Posted 4/29/2011 2:23 AM (GMT 0)
So sorry to hear about your bad day :(. Hope you're feeling better soon!!!
Posted 4/29/2011 4:59 PM (GMT 0)
i'm so sorry you are going through this!  I hope you can get into remission at some point.  what does your doctor say?

Posted 4/29/2011 8:37 PM (GMT 0)
My Doctor thinks that the reason I am having accidents and urgency is because I am not healed at the bottom end. We know the remi is working to some extent because I have lots of formed stool, it just doesn't seem to heal everything (yet?).

He thinks that all of the other stuff - headaches, aches pains etc - is from the remaining inflammation. He has put me on Prednisone for a quick 5-day burst to see if those symptoms go away. Reason being that when he put me on pred a few weeks ago while waiting for my remi dose, all of these secondary symptoms went away while I was on the pred. So far today, I feel better than I did yesterday in terms of those symptoms. :)

As far as the urgency goes, I am using budisone (sp) or cortifoam nightly - doesn't seem to be doing much though. Urgency was just as bad today, but fortunately, I was already home and was able to get to the washroom.

Not sure what the next steps are. We'll see how I continue to do on the pred for the next few days/evenings.

Thanks for all of your support.
Posted 4/29/2011 8:53 PM (GMT 0)
that totally sucks! An awful way to start your wknd. But we've all been there, and completely know what it's like! Do you ever contemplate surgery? Or has your GI mentioned Humira? I'm sorry if you answered those questions a million times before....!!! What about sticking a port-a-potty of sorts on your car, does it have tinted windows? I did that about 18 months ago- finally got fed up with crapping pants, so took an old square plastic bin with a snap-on lid, lined it with plastic grocery bags, and there you have it! I can't even tell you how many times I've suddenly pulled over my car, jumped in the backseat & let go! Then I just tightly knot the bag & toss it into the closest available dumpster or public trash bin. I always have tissues in the car, & use those for TP. I found even having my "own" bathroom in the car made accidents much less of an accident, if you know what I mean. Nowadays when I use the bin, it's like no big deal, I could just as easily be in the bathroom at home! Prior to the bin, I was lining the set with bags, sticking diapers in my pants, etc- when it gets to that point, you may be better off looking at alternate options- cause basically you're preparing yourselkf for what you know is going to happen. Anyway- a little long-winded, but go easy on yourself, take a nice bath & relax- accidents happen! sad
Posted 4/29/2011 11:56 PM (GMT 0)
You are not alone! A co-worker sent me a link to this essay on Salon about this very topic: http://www.salon.com/life/mortifying_disclosures/index.html?story=/mwt/feature/2011/04/25/when_nature_calls_mortifying_disclosure

It is nice to hear someone talking about the disease to a larger audience. I think many people have no idea how horrifying UC can be.

Have you tried the Rowasa enemas? I never had any luck with the steroid enemas but the Mesalamine ones work very well for me. I usually use a Rowasa in the evening and a Canasa during the day when things seem inflamed at the lower end.
Good luck!
Bridget
Posted 4/30/2011 12:26 AM (GMT 0)
bhb - yes that was a great article. It was posted here too.

Eva - I typed a whole post back to you and don't know where it went! I hope I didn't post in on the wrong thread.

Basically, I said:

Thank you for your support. I don't think I would even have time to pull over safely. My initial "oh, I think I have to use the washroom" and "OMG, I NEED TO GO NOW" was only about 20 secs - so fast. It took me maybe another 20 sec to get into the parking lot, and by then it was too late.

My husband went out last night to get me some diapers and wipes. I am keeping that in the car along with a change of clothes, and I also started wearing one of the diapers today. :(((( I will see how it goes. I might just slip into the washroom before I leave work to put on one for the drive home, rather than wear it all day.

My Dr has mentioned Humira, but I don't think it is approved for UC here. He also mentioned trying to find a trial, but I would not likely go that route. So, yes, I have considered the surgery. I have my surgeon picked out, with an option for another if he is not available. I am not ready to have it yet - I would really prefer to keep my colon if I can.
Posted 4/30/2011 7:02 AM (GMT 0)
Hello,
I can relate lately with the flair i've been in I cant tell you how many pairs of underwear I have thrown out cause I couldnt make it to the bathroom. I feel your pain and urgencies. I hope you feel better soon.
Hang in there !!!!!
Posted 4/30/2011 11:15 AM (GMT 0)
I remember reading somewhere (perhaps here, perhaps somewhere else) that someone suffering from UC keeps a child's potty in her trunk in case she's somewhere and she knows she won't make it to a restroom.  I don't think that's a bad idea.  As we all have, I can't tell you the number of times I have been in extreme agony driving with the urge.  Up until now, the worst it's gotten is that once I have reached my apartment I have not made it.  Which is ok because I am home.  But I have definitely had to detour my route many times to go to a fast food restaurant or pharmacy because I surely wouldn't have made it home. 

My friends and family, who know about what I suffer from, still don't quite understand how one minute I can be fine, and the next desperately in search of a restroom.  If I relate a particulary harrowing experience with them, they often ask....why didn't I just use the bathroom before I left...even if the trip is just ten minutes down the road.

I have friends that say they will never have a BM in public no matter how bad they need to go.  To that I say, then you never really had to go.

 

Posted 4/30/2011 12:09 PM (GMT 0)
I don't want to get rid of my colon yet either.... and I too generally have 30 seconds max to pull over & dive into the backseat! I'm lucky that I live in a fairly rural area (Cape Cod), so it's pretty easy to pull over fast. Plus, I have my favorite spots even, I drive the same route practically every day, & some pull-over spots are much more enticing than others! I think with the diapers (which is another huge ego crushing blow!), wipes, & change of clothes you'll feel way more relieved. At this point, when accidents happen to me, I just clean myself up & go along with the day, it barely even registers on me, emotionally. Not sure if that's good or bad, truth be told! PS- stick some large & small zip-lock baggies in your car/purse too- they come in mighty handy!!!!!
Posted 4/30/2011 6:53 PM (GMT 0)
May I ask why you would rather have accidents than have surgery?
Posted 4/30/2011 7:11 PM (GMT 0)
Mom2panda,

I've had many accidents over the years but now I always use Lomotil to slow down the colon and control the urgency.  Since I've started using 1 pill  a day after my morning BM's I haven't had an accident.  It takes about 30min to kick in so I always make sure I take it in plenty of time before I need to go somewhere.  It really has helped me and therefore less anxiety about going anywhere. Some people need more than one pill but one helps.

Do you use your Cortifoam during the day?  Are you using an enema a night?  When flaring bad the foam is great during the day and I use hycort at night.

Posted 4/30/2011 9:19 PM (GMT 0)
Summerstorm - I am not sure why you are assuming that I would "rather" have accidents. I am pretty sure that most people would not choose to have accidents, but it happens. Doesn't mean you should run off to the surgeon immediately.

I have only had 3-4 accidents over the past 2 months. I am waiting to see if remicade is going to work the rest of the way or not. Certainly, I have done my research on surgery, have picked out my preferred surgeons, and am doing research on whether to have a permanent ileo or a j-pouch. It is obvious that I am running out of options, and I am wrapping my head around my future choices.

Puffed rice - I have always been told not to take lomotil (Immodium) for fear of toxic megacolon. I will check again with my GI - thanks.

Eva - I live in a big city with lots of traffic - no where to pull over quickly, and certainly not privacy! ;) Imagine the show I could put on for the passing pedestrians! lol. Thanks for the tip about the zip-locks. I will add them to the kit. I am frustrated with the accidents, but not really emotional about them. Same as you, clean up and get on with the day. What else are you going to do? No one else is going to pick up the kids, so you just have to keep going.
Posted 4/30/2011 10:19 PM (GMT 0)
Ugh I've totally been there before and am in complete shock after like wow it just happened so quick. It's hard and frustrating I don't even know what to say then that it's just something we have to work around and be prepared for in case of those accidents. I'm in Ontario too and in the busy city so it has it's pros and cons lots of restrooms but lots of people and no privacy. I hope the remicade helps And you can delay your other options until your ready. Good luck m2p
Posted 5/1/2011 12:21 AM (GMT 0)
mom2panda,

So sorry to hear about your day - that's pretty rough... I guess that's why they are called accidents, since they can't be planned for, even as much as we all try... and we've all been there.

Just curious, have you ever given any thought to going on Transdermal LDN?

Posted 5/1/2011 2:00 AM (GMT 0)
I asked because you said you had accidents but want to keep your colon. You had your seat lined with plastic so you knew it was a possibilty. surgery removes the problem of accidents. I wasnt suggesting you run off to the surgeon that's something not everyone is ready for.
I just always wonder when I read the posts about the accidents why someone would keep doing that instead of having surgery and not have that problem anymore.
I just don't like to see people suffering with this stupid disease when they don't have to.

Post Edited (summerstorm) : 4/30/2011 8:04:31 PM (GMT-6)

Posted 5/1/2011 3:13 AM (GMT 0)
I can agree with summerstorm's question, wanting to ask it myself, for the fear of accidents as such would have me requesting my colon out tomorrow if it could be.

I would somehow rather deal with the misery of the surgery/healing, etc than having accidents in my car, using a porta-potty/plastic bag, diapers...my coping skills would be whisked away quickly via my anger.

I've never had major accidents except teeny ones at home while running to the toilet...but I've definitely been spoiled with having meds that work, limited UC and control in my work life.

The why of one's/others' tolerance is truly a matter of perspective. All frustrating.

q

Posted 5/1/2011 3:16 AM (GMT 0)
Thanks summerstorm. Honestly, I don't consider having a few accidents over the past couple of months a reason to go for surgery - yet. The accidents are new for me. As I said, I am still hoping the Remi will work. If it doesn't then, of course surgery is on the horizon. Believe me, no one should live this way unnecessarily, I agree. In the back of my mind, I think that the fall would be the best time for my surgery, with stage two done in early 2012 - if I go for the j-pouch.
Posted 5/2/2011 5:28 PM (GMT 0)
mom2panda,

Have you considered taking psyllium ? It helped/helps my daughter immensely. It will make your stools more formed and hopefully help with the urgency.

Sorry to hear you're having a rough go at it. Hopefully things will get better for you soon.
Posted 5/2/2011 6:48 PM (GMT 0)
Momuc19 - Thanks so much for the suggestion. Unfortunately, my problem IS the formed stool. I have some urgency with looser stool, but it is nothing like the urgency for the formed stool.

I phoned my GI today, so we'll see what he says.
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