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Crohn's Disease Forum » Surgery » Stoma Subforum » Colectomy Post-op Nightmare


07-31-2013, 02:45 PM   #1
Boloby
 
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Colectomy Post-op Nightmare

I recently had a total colectomy/ileostomy (June 24). The surgery went well, but the post-op was a disaster. My pain management was screwed up, and I developed ascites, which the doctors failed to diagnose until after I suffered for 11 days.

It was a learning experience to say the least, so I'm in the process of documenting it on my blog, broken into different parts. So far, I've got the first three up.

Surgery Part 1

Surgery Part 2

Surgery Part 3
07-31-2013, 07:38 PM   #2
annawato
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Sorry to hear about your post op problems Boloby. Just what you need on top of everything else! I had the smae experience with my last op. The pain management was practically non existent. One of the problems of spending so much time in hospital on pain meds is your body gets used to them. At my local hospital they know how much to give me but last op was at a major hospital and they didn't provide enough.
I'll drop in and read your blog sometime.
Keep strong,
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Anna

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
08-01-2013, 07:35 AM   #3
Boloby
 
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Thanks, Anna. My situation is a bit similar, as my local hospital had the meds I needed, but this one didn't even know what they were! My problem now is I'm set to have two more surgeries at this hospital, so I need to either get the pain management figured out beforehand or go somewhere else.
08-04-2013, 05:29 AM   #4
Kela80
 
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Just read your blog. Totally understand your pain and what your going through. I was diagnosed with psc in 1998, crohns in 2000. Had sub total colectomy in 2009. That was reversed 8 weeks ago and feeling well. So well in fact I'm heading off to Europe for holidays for 7 weeks. I'm not on transplant list but the 3 Surgeries in the last 2 years has caused may liver to get worse. My billi keeps fluctuating from 50-170 and they want to do an ERCP when I return.

What symptoms you experiencing with psc?

Hang in there it gets a little easier every day. The stoma takes a while to get use to but once you have had it for a month to two it becomes the norm. I had mine for 18 months.
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Ante

33yo Melbourne Australia
Primary Scelrosis Cholangitis 1998
Crohns 2000
Divertculitis 1999
Stoma 2011
Reversal 2013
08-05-2013, 12:18 PM   #5
Boloby
 
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Just read your blog. Totally understand your pain and what your going through. I was diagnosed with psc in 1998, crohns in 2000. Had sub total colectomy in 2009. That was reversed 8 weeks ago and feeling well. So well in fact I'm heading off to Europe for holidays for 7 weeks. I'm not on transplant list but the 3 Surgeries in the last 2 years has caused may liver to get worse. My billi keeps fluctuating from 50-170 and they want to do an ERCP when I return.

What symptoms you experiencing with psc?

Hang in there it gets a little easier every day. The stoma takes a while to get use to but once you have had it for a month to two it becomes the norm. I had mine for 18 months.
That's great news about your reversal. Hope your trip to Europe goes well.

For my PSC, I've been itching A LOT, but other than that I'm not sure what symptoms are from that or something else. Fortunately (knock on wood), I haven't had any fevers or bile duct infections. Not looking forward to this disease progressing.

Anyway, parts 4 and 5 are up:

http://boloby.wordpress.com/2013/08/...eye-see-you-2/

http://boloby.wordpress.com/2013/08/...-up-not-quite/
08-09-2013, 02:12 PM   #6
Boloby
 
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It's now up to Part 7, which is the "climax" of the story and was the most difficult to write, for personal reasons. But I'm glad I did it. Just one more part to go. Please check it out and feel free to share the link if you like it!
08-10-2013, 08:12 AM   #7
annawato
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Ante I had an ERCP in about 1998. Was just like having an endoscopy, no pain.
Fabulous you are travelling to Europe soon. Have a fabulous trip.
08-10-2013, 10:06 PM   #8
annawato
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Boloby I just read your blog and it made me cry. Not just for the awful experience you went thru but because it so reminded me of my last hospital stay. The excruciating pain, the indifferent nurses (and some wonderful ones), the doctors not listening when I said the wound was infected (a week later they agreed that yes it was). Being forced out of bed into the shower 14 hours after surgery followed by having to sit up in a chair for an hour.The Ct scans, MRI's and X-rays, all necessitating an agonising wheelchair trip. The call button not being answered for an hour. The inappropriate meals. I mean really, beans and corn??? The whole experience was horrendous. It has made me absolutely dread having to go back which I have no doubt I will need to. It seems hospitals and medical professionals are the same the world over.
08-15-2013, 02:45 PM   #9
Boloby
 
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I finally finished my surgery story. Parts 1-8 are all available in order on my blog. Here's the latest:

http://boloby.wordpress.com/2013/08/...ace-like-home/
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