It happened at the ballgame.

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nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/14/2008 11:05 AM (GMT -6)   
 I have been lucky not to have had a bag accident these last several months since my colectomy. However, last night I had an experience at the ballgame watching my adorable little grandson play baseball. You all know the panic feeling when you feel wetness. I jumped up and told my husband, "Oops I spilled the coke." In the bathroom I found out it was my wafer unloose at the bottom.OMG I hadn't seen my grandson come up to bat yet. So I snapped the sucker back and took a blanket and placed it on my lap.--Watched the whole game. They won 16-4!!. The point of the story is this. In the past I would have been totally embarrassed because it would have looked like I had pooped. But with a bag it really did look like I had spilled coke on the front of my jeans. 
Jennie

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/14/2008 11:53 AM (GMT -6)   
I'm glad it wasn't a wafer blowout. Good for you for staying at the game! :-)
 
Is "Oops I spilled the Coke" the code to your husband that you're having a leak?! LOL tongue

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/14/2008 1:52 PM (GMT -6)   
No, he was too much into the game. He didn't know I had had a leak until we got into the truck, and I told him. He doesn't get too excited about anything. Guess that is my department. I'm so glad I have you guys to talk to about bags and such.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/14/2008 2:05 PM (GMT -6)   
It is so good to read things like this.  As a Crohn's board member, I am starting to think that an ileostomy is the route to freedom.  Starting to read on this board too.  Thanks for sharing!

--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/14/2008 6:16 PM (GMT -6)   
you handled that really well! one of the things i thought would be good would be that if you did have a leak, noone will think it's poo on the front of your pants!
so we should jsut always carry around a coke!
it must have been wonderful to be able to watch the game feeling good!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/14/2008 10:44 PM (GMT -6)   
Welcome, sr5599. I'm glad you're learning a lot of good things here. :-) My Crohn's was also limited to the large intestine, and I had a fistula, too, which was no fun. sad I had surgery two years ago and have been disease free ever since. My gastroenterologist told me that since I never had Crohn's in the small intestine, it will probably never show up there. So far, she's been right.

If you have any questions about anything, please feel free to ask.

Take care,
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/15/2008 11:12 AM (GMT -6)   
Thanks so much! I had a dream last night that I had the surgery. It was probably a result of reading the Little Things thread. Today's been horrible and with my third Tysabri infusion tomorrow it's sort of last chance. At this point I just want to be done with it. I've wondered that, since I am indeterminate/large intestine only, if it would pretty much take the disease away (no guarantees, I know, but likelihood thing). I find myself getting excited about the ostomy and the opportunities it would allow. Imagine I could sleep until 20 minutes before I had to leave! I'm a 2- hour person now who is still scared to take her daughter to school after 2 hours! This can't be easier or better or healthier or whatever than an ostomy! Geez! it's just a different way to pass waste!

Someone else on here said that they've had others respond to the possibility of an ostomy as if it were an amputation. That's the way my friends/mother have been. I am starting to see through my own eyes and let their fears not influence me. One more month of Tysabri time and then I make the choice! I've fought about all I have to fight!

Thanks again!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/15/2008 8:50 PM (GMT -6)   
i think what the amputation thing is mainly, is that, and this sounds really weird, after you have it, you will still feel like you need to go to the batrhoom the regular way sometimes, it doesn't last long, and it doesn't happen often, but it's sort of like the phantom pains amputees feel where their leg or arm used to be.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/15/2008 9:38 PM (GMT -6)   
sr5599,
You are exactly right... it is just another way to pass waste. In fact, if people knew how wonderful it is to never have to hurriedly run to the bathroom again, they'd all want one! tongue

It's completely hidden under your clothes, so nobody would even know you have one. I recently started wearing a two piece bathing suit with a skirt! You should check out our photobucket.com page. It has pictures of us on there, and you can't tell that any of us have ostomies. The user name is crohnsdisease and the password is 6mp3asa. Feel free to post a photo of yourself, too.

The first thing I noticed after my surgery was that I was able to sleep through the night uninterrupted, because I hadn't had a good night's sleep in years. I also found an excellent extended wear wafer from Coloplast that stays on for a week, and that's after exercising and showering every day. It is truly no fuss at all!

I had Crohn's in the rectum, too, so I had to urge to go to the bathroom all the time. Now, I never have that urge, and I love it! During 7 years with active Crohn's, I went to the bathroom enough for one lifetime!

People who are healthy don't understand what we've been through, so you have to take their opinions about surgery with a grain of salt. My dad and brother both called me the night before my proctocolectomy and asked me if I thought I was doing the right thing, and they are BOTH DOCTORS!! confused Go figure!

You have to do what's right for you, and in the end, your friends and family be thrilled to see you healthy again. Good luck with your Tysabri infusion, and keep us posted on how you're doing.

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/16/2008 10:33 AM (GMT -6)   
Thanks again. I scheduled an appointment with my surgeon for June 4th. By that time I will know if this third Tysabri infusion is actually putting me into a place that I can live in. I am keeping a record of bleeding and bathroom trips so that I can't let my mind play games (oh, it's not that bad). I have no idea of what to expect with the surgery (recovery time, etc). Not only will I research that (and read back posts on here) but the surgeon's visit should help me understand.

You are right. healthy people see it differently. They see it as a loss whereas for me it would be a gain. I am wasting my life sitting around worrying about the bathroom. It's just an emotional hurdle that I need to prepare to jump through. I admit, I am terrified. But I am terrified of living the rest of my life this way too!

I appreciate so much all of you who take the time to write to all of us who are considering changing over. Thanks! It really helps!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/16/2008 10:35 AM (GMT -6)   
Oh, btw, I spend a lot of time with my daughter swimming in the summer (laps and play). Bathing suits are one of my biggest (silliest?) fears. I know I could wear a one-piece, but yesterday I got the idea of board shorts with a top! That would work, wouldn't it?
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/16/2008 2:45 PM (GMT -6)   
i think it would. my bathing suit is one of those tankinis i think that's what they are called, it's a tank top looking top and then the bottom has a skirt on it, it sort of looks like a tennis dress.
ifyou can find a two piece you like, i think that would be a lot easier, then you could empty as often as you want, without taking the whole thing off!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/17/2008 4:00 AM (GMT -6)   
Board shorts with a bikini top would work, as long as they aren't too low waisted. My bathing suit has bikini top with a skirt bottom that covers everything, including my big butt! he he he LOL tongue I have gained some weight since surgery, but that's because I'm not sick anymore. I see the extra weight as me finally being healthy. :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/17/2008 9:34 PM (GMT -6)   
the gaining weight seems to be a common thread, lol. I have too, and i am not sure how good my suit is going to look this year. I have alot of eating to catch up on!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/18/2008 6:54 AM (GMT -6)   
sr5599,
Welcome to the Ostomies forum! There is a ton of information here in this forum. Summer and Cece have covered everything pretty well. I too had CD and have been in remission since my ileostomy in 1984. It was located in my rectum, colon and small intestine. I have not had to alter much in my life at all.... in fact, knowing the location of every bathroom in the city is the least of my worries. Now, I know which drive thru restaurants have the least traffic over the lunch hour!!!! (jk)

As you know, no question is too stupid to ask, so Ask Away!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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