Surgery now behind me and starting new life

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New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 2/16/2009 11:48 AM (GMT -6)   
Just thought I'd update everyone on my surgery from 1/29.  My surgery was a proctocolectomy with a permanent ileostomy, unfortunately it could not be done laparscopically due to all the scarring from previous resections.  So after almost 6 hours of being under, Mayo in Scottsdale got it all taken care of.  Haven't posted sooner just because it's still hard to sit upright for a long period of time.  Good news is the bag hasn't bothered me a bit and when I woke up from the surgery, I truly felt different (clean) - I could feel that the crohns was gone which is a good thing.  The surgeon confirmed that it was never in my small bowel which is pretty much what we knew all along, so he thinks I could live disease free for many years if not the rest of my life - although there are no guarantees it (the crohns) won't come back, but we're thinking positive. 
Now I just have to figure out what appliances I like best.  They gave me velcro bags in the hopsital and I liked those.  I ran out and am now using the two piece with a clip.  I'll search the forums to see if anyone posted any feedback on what they preferred.  I'll work with the companies to see about getting some samples and determine what I like best, but would be curious to hear from others that have used the clip and the velcro bags and why you went with one versus the other.  There may be things I'm not thinking of since I'm new to this. 

Regular Member

Date Joined Jun 2007
Total Posts : 303
   Posted 2/16/2009 12:08 PM (GMT -6)   
Hey Spindy,
So glad that your surgery was successful and that you are doing well both physically and emotionally. Isn’t it great to be rid of the disease that was keeping you down?

I use a ConveTec system.- two piece, moldable flange, eakin seal and with a Velcro closure. It works for me. The only problem I have had and I probably would have had it with any appliance was eating really high fiber food. That choice caused a leakage or ooze (sorry) out the paper tape.

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 2/16/2009 1:59 PM (GMT -6)   
Spindy--glad you are feeling better now! I never thought I was sick (had an ileo for many years before my proctocolectomy) until after my proctocolectomy...I could definately tell the difference:) Every day is better than the one before!

It took me a while to get over the "what if the velcro lets go" feeling, but I LOVE my Lock n Roll's!!! Its freedom:)

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 2/17/2009 12:42 PM (GMT -6)   
Welcome to the club :)  Once you're all healed up you'll be amazed at all the things you can do-things you might have thought before impossible due to the crohns.  As for appliances, I use hollister new image with lock 'n' roll.  Works great, never had any troubles.  I did try all the different brands out there though of course and I suggest you do that too.  Just call up the manufacturers and tell them you're new and not sure what to use ie one vs two piece and if they could send you a variety of different samples...different size bags/syles etc.
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 2/17/2009 11:05 PM (GMT -6)   
Hurray for health!
Glad to see you back and to hear you're doing well.

I like the sensura two piece with velcro. I like that it's so small. I prefer the hollister velcro, but I don't like their two pieces.
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

New Member

Date Joined Dec 2008
Total Posts : 18
   Posted 3/8/2009 4:12 PM (GMT -6)   
Thanks everyone for your comments.  Unfortunately my husband who wrote this post developed a very large blood clot in his left thigh that moved to his lungs.  He came very close to losing his life, but is starting to progress and has been back in the hospital for the past couple of weeks.  Looks like he will be without the use of his left leg for quite some time, but it will come back.  In the end, he still says it was all still worth it and wanted me to extend thanks for the support he has received from this forum.  Not quite the new start in life we had planned for, but I'm just glad to still have my husband.  PRS

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/8/2009 4:18 PM (GMT -6)   
Oh my how horrible! but i am glad he is going to be ok!
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