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badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 12/29/2008 7:15 AM (GMT -6)   
I've kind of stayed off posting (but still checking in) because I just haven't been happy with having my ostomy for almost 2 years and didn't want to scare any newbies off. Right off the bat I developed a hernia which after several opinions, did not warrant surgery. Being 90 pounds and 4' 11" I look pregnant at 50. I have Crohn's disease but had my colostomy because I had rectal cancer. I had all the rectal problems that go with Crohn's: fissures, fistulas, abscesses you name it. At least I thought that those things would be over when I had my ostomy (and removal of the rectum). Well ... I am just recovering from having abscesses drained from the stomal area for a Christmas gift. I was one hurting unit when they ran a CT scan which picked that up as well as the presence of severe Crohn's activity. My surgeon said that people with Crohn's are just as likely to get fistulas, and abscesses as they were before and now I am still having major cramping from the active Crohn's. One good thing? Vicodin. And the other? More vicodin.

Sorry to vent. The people I am closest to I am sure are sick of hearing about all of this because they all heard I would be happier once I got my ostomy. (Hmm. If I had a buck for all those times I heard that, it would pay for my Zoloft for the rest of my life :-). Seems these things always happen around Christmas! 4 years ago on New Years Eve I was in emergency surgery with a perforation resulting in a resection, the next year a drainage for an anal abscess (for the 5th time so it was a little more than just draining it) and then two years ago just before Christmas was diagnosed with the cancer. Hard to get in the mood when these things happen.

BadBagGirl
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 12/29/2008 3:28 PM (GMT -6)   
you know, ostomies aren't that hard to get used to, but I will say it is a little hard to get used to, I have had mine for 9 years and maybe for the rest of my life
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.

If you want to know more, just ask me!


Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 12/29/2008 10:15 PM (GMT -6)   
Vent away BBG we all need to from time to time.
Moderator for the Diabetes forum
 
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus /RLS/ Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/30/2008 6:50 AM (GMT -6)   
BBG,

I am sorry that you are having a rough time with your health and ostomy. Venting here is better called "sharing" experiences. We all know that those good stories are probably matched by bad experiences as well. And everyone's body is different. We cannot predict our futures, but with the help of Zoloft, Paxil, Vicodin, even the dimmest days can be tolerable. I wish you luck and best wishes in feeling better and recovering. Please continue to keep us all posted now that we know what is going on with you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 12/30/2008 4:08 PM (GMT -6)   
I am so sorry! This must be such a rough time of year!! I know if I were you I would just be wondering every year...what's next?!?!? I can't believe how bad your crohn's still is despite the numerous surgeries. You have definitely had your fill!! I hope things improve....SOON! I've had my temp for 6 years and my perm ostomy for nearly 3--it doesn't matter how long you have it--some days it just plain sucks. I know its even worse for you b/c you still are battling the DD every day. I'm sorry.

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 12/30/2008 4:21 PM (GMT -6)   
Thanks guys. I feel better today. In fact downright starving (haven't felt like eating in a week or so) and ordered myself a pizza! My doctor is putting me back on Humira which I was on when I was diagnosed with cancer. I was on a study then so they took me off. Seemed like it worked pretty good for the symptoms.

It seems like most people with Crohn's here have been doing good since their ostomies. Anyone still having problems and what did they give you?
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 12/31/2008 8:48 PM (GMT -6)   
Glad you're feeling better today. I hope Humira puts you into a nice, long remission, because you have been through enough and deserve a big break from all of this. Hopefully 2009 will be a good year, and enjoy that pizza!

JoJosMom
Regular Member


Date Joined Nov 2008
Total Posts : 24
   Posted 1/1/2009 9:51 PM (GMT -6)   
BadBagGirl,
In spite of all your challenges, your dill pickle comment made me spit out my decaf. I'm only a month out and only had a colectomy with ileorectal....but have had 2 other types of cancer and other junk. I don't make good dill pickles at all. My colo-rec doc said it would take a year to get the "hang" of the changes, but I think he just said that so I won't call him. My troubles are quite insignificant compared to yours, but I go back to wrok full time Monday, and am still not quite in "control" of the cues that tell me run to the loo. And I don't have a clue what to eat, or what hurts till it's already in the middle of whatever in the world it's doing now. Still better than no poo for 4-5 weeks, and the constant pain and bleeding.

MMMM pizza sounds good, but I find it also sounds scary.
Annie
56 year old
Endometrial cancer, hyst 1992
Invasive breast cancer, 1999 w/rad & chemo
Lacunar infarc (stroke, 8/01 & 05/02)
Benign falcine meningioma, 3/04 (watch & wait)
Bilateral mastectomy 2005
Bilateral salpingo oopherectomy & breast reconstruction 2006
Genetic diagnosis of HNPCC MSH2 (Lynch Syndrome II) (have had previous cancers related to Lynch)
Colectomy w/ileorectal anastamosis 11/25/08, clear path
 


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/2/2009 6:24 PM (GMT -6)   
Gosh ... I will share my pickle recipe when canning season approaches next year! That's how 'special' this group is ;-).
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/2/2009 7:39 PM (GMT -6)   

Ohhh BBG - are you really gonna share your recipe??   I might have to grow cukes this year just so that I can use your dill pickle recipe!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/3/2009 7:18 AM (GMT -6)   

Hi,

just wanted to let you know I read your post and feel your pain...hang in there... I know if you had a dollar for everytime you heard that you would have enough to pay for you Vicodan too.. yeah   anyway, my daughter is on post op day one of her ileostomy..13 years old.. been reading and trying to learn,

Take care,


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/3/2009 8:18 AM (GMT -6)   

BBG--ooohhh a pickle recipe, goodie!!!  I too will grow cukes...or I should say "try" since I usually don't have good luck with living plants:(  My family  goes through JARS of them but I have yet to find one I really like...

AMY476--welcome to the forum!  You've come to a great place for information...I hope your daughter's recovery is a quick one!  Was is lapro or open?  Make sure she walks, walks and walks...and then when she doesn't feel like walking, walk some more!  It will help get everything moving so she can get home sooner...there is nothing like recovering at home smilewinkgrin    Keep us posted on her recovery!

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