OMG OMG. Results from my Dr Appointment!!!

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sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 4/3/2008 1:54 PM (GMT -6)   
I am officially scheduled for surgery on May 30th!!!!! That's only 8 weeks away! AHHHHHHHH!
 
I am scared to death. Surgery wasn't fun the first time around. But I am excited, too!
 
This is what my Doctor said:
 
First of all, I will need TWO more surgeries - one to form the pouch, and then one to reconnect the ol' pipes. I was prepared for this so that was okay. What I wasn't prepared for was the fact that the whole process will mean another solid four months off of work. I will have my surgery May 30th, then 8 weeks later, go in for the reconnect. Then he said to take another 8 weeks after that before going back to work. He was very proud of how healthy I got myself (lost 50 pounds, etc.). He is a little cautious because once they had done my pathology after the colectomy, the results said I had Indeterminate Colitis, so he warned me that if I really have Crohn's I may have some issues with pouchitis and other complications. But he said that being labeled as Indeterminate would not exclude me from being a candidate from the j-pouch surgery.
 
While I don't look forward to string all over again (not being able to walk around the block, let alone hit the gym), I know that by my next birthday (Oct 4th), and God willing, I will be done with surgeries, and well on my way towards recovery.
 
I am a little scared of the loop ileo I will have after this next surgery - but it will only be there for two months. Have any of you had this surgery? Any advice or thoughts? Any little thing will help prepare me - I do much better when things are planned and I have warnings of what "might" happen. I'll check on the jpouch board, of course, but you guys are like my little extended family, so I am asking here, too.
 
And for those of you thinking about taking this step, I'll be happy to share my journey if you are interested!
 
8 weeks!!8 weeks!!8 weeks!!8 weeks!!8 weeks!!
 
 
If at first you do not succeed, then skydiving is surely not meant for you.
 
Jo - UC, total colectomy and ileostomy on August 24, 2008.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/4/2008 3:59 AM (GMT -6)   
Oh my goodness is right! That's great news that you're a candidate for a j-pouch. I'm excited for you! And congratulations on losing 50 pounds! You go girl! Eight weeks is plenty of time to do your research to find out everything you need to know. I have a good friend who has a j-pouch, and she loves it. Does your workplace offer short term disability? That is helpful when you have to be off work for so long.

I'm doing my happy dance!

:-) 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 :)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 4/4/2008 5:05 AM (GMT -6)   
 
That's excellent news :)
 
sfgiantsjo said...
if I really have Crohn's I may have some issues with pouchitis and other complications
 
You may have misunderstood him a little. Pouchitis is a common complication for those who have a j pouch due to IBD, meaning if you actually have UC you can get it too so it's certainly not an indicator that you definitely have Crohns instead (it's rarely found in those who have a j pouch for FAP though) - it's usually easily cleared up with the use of certain antibiotics tho.
 
With crohns, the major complication with a j pouch would be crohns actually affecting the pouch itself which would probably mean another op to revert back to a standard ileostomy causing you to lose the j pouch along with some much needed small intestine :( 
 
If your IBD has been confined to your large intestine and lower areas only for the past 5 years then chances are you will be fine with a j pouch and even if it turns out to be Crohns it won't affect the pouch (some surgeons are even performing j pouches on known crohns patients who have the above criteria) :)
 
sfgiantsjo also said...
I am a little scared of the loop ileo I will have after this next surgery - but it will only be there for two months. Have any of you had this surgery? Any advice or thoughts?
 
A girl I work with had step 2 of j pouch surgery 5 weeks ago - she's been back at work part time for the past couple of weeks. A loop ileo is a little harder to look after than an end ileo but is very doable. Because it's higher up in the ileum, output will be more watery (and therefore, will feel as though it's more copious).
 
Good luck.
 
Btw, your birthday is the day after mine (mine is 3rd October) :)
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 4/4/2008 11:17 AM (GMT -6)   
Just wanted to say good luck with your surgeries. We'll all be thinking of you and waiting to hear how everything goes. ((HUGS))
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin

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