Where do I start?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 6/21/2009 5:14 PM (GMT -6)   
I'm a regular over on the crohn's board... but I'm thinking about migrating....

I'm running out of options, and quite frankly, out of marbles.

If I want them to take out my guts... be it small or large intestine, rectum... I don't even know where the disease is active these days...

Where did you all begin this journey? I don't know an ostomy from a hole in the ground... there's so many different kinds it seems.

Is there a site or link that you could recommend for "Ostomy 101"?

Thanks in advance for any advice.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/21/2009 6:29 PM (GMT -6)   
Welcome. I think this is a good place to start, since many of us have ostomies due to Crohn's. The United Ostomy Association of America's website www.uoaa.org also has a lot of good information.
 
If you have Crohn's in the small intestine, large intestine, and rectum and choose to have surgery, you will probably have what I had done, a proctocolectomy with ileostomy.
 
That is where they remove your large intestine and rectum and create a stoma from your small intestine. They can also remove the diseased part of your small intestine, but you want to keep as much of it as you can, since that is where you absorb all of the nutrients from your food.
 
A stoma looks like a small strawberry on your belly to the right of your belly button and down a few inches. A wafer and pouch cover the stoma and collect waste. The wafer is peel and stick, and the pouch snaps and locks onto the wafer. There are many different varieties of wafers and pouches to choose from. 
 
You empty the pouch using a velcro closure while sitting on the toilet, and change the wafer as needed (every 4-7 days). The wafer is waterproof, so you can shower, exercise, and swim with it. 
 
That is sort of a quick overview of what an ileostomy is. We are here to answer any questions you may have about the surgery, etc.
 
I've been very happy with the results of my surgery and have been disease-free and medicine-free since having it done. It gave me my life back, so I'm very glad I had it done.

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.


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 6/21/2009 6:50 PM (GMT -6)   
Thank you so much for taking the time to reply. I truly don't know what I would do without this place.

Your story means the world to me.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
Noticing a real difference with a Gluten-Free diet.
Currently on:
Cimzia (started 2-12-09)
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Prednisone free, again! WHOOPIE!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/21/2009 6:58 PM (GMT -6)   
:-)  I'm glad to help in any way I can.
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.


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/22/2009 4:33 PM (GMT -6)   
patientspiders said...
 I don't know an ostomy from a hole in the ground...

 

 

Now that's funny!!!

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, October 18, 2017 6:06 PM (GMT -6)
There are a total of 2,883,901 posts in 316,440 threads.
View Active Threads


Who's Online
This forum has 157567 registered members. Please welcome our newest member, Margo.
444 Guest(s), 14 Registered Member(s) are currently online.  Details
81GyGuy, Lapis_29, sdfsdfdsfdf03, Rikky1, Tsak11, dacarte3, getting by, Skypilot56, NiceCupOfTea, zoomd, quincy, olsky, straydog, worryboi


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer