new member story and ?

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Joe_Shmo
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/30/2009 8:35 PM (GMT -6)   
Hello everyone.  I am 37 years old and have been dealing with UC since I was about 19.  Two years ago, for the first time, I was hospitalized for a BAD flare.  I lost 70 pounds in 3 months.  I was on every medication know to man, I think.  Anyway, they were giving me Delaudid (not sure about the spelling) about every 4 hours for the pain.  The dr's said they didn't know what was wrong with me.  I had severe pain in the area of my traverse colon (middle) and the end of my decending colon (down the left side).  On the night before they were going to kick me out of the hospital (second time), I got a massive pain in my right shoulder.  The dr's were called in, did some tests and told me I had two hours to tell them whether or not they could do emergency exploratory surgery on me or I would die.  They said I had "free air" floating around in my abdomen and that if it was a hole in my stomach, they could fix it.  If it was my gall bladder or small intestine, they could fix it. If it was my colon they had to take the entire colon out.  I woke up from surgery many hours later with an ileostomy.  My colon had perforated in 5 places and was leaking stool into my abdominal cavity.  I was completely crushed!  I was told by many of the other dr's that according to the medical records taken on the sugery, I am VERY lucky to be alive.  I am very grateful for their efforts but I still have alot of depression to deal with, and I am dealing with it pretty well.  I have considered having the reversal done (j-pouch), but my colo-rectal surgeon says that I will basically be in a constant state of diarrhea.  As with the ileostomy the stools are a bit more liqiud and I have to use the restroom about 6-10 times a day with the bag.  He said that I will still have to use the restroom just as often.  Can anyone, who has has the reversal done, give me their point of view on whether it was worth it or not.  I am an outdoors type of guy and I am in a boat, fishing alot.  I REALLY don't want to wear depends for the leaks.  I have seriously considered the completion surgery to remove my rectal stump, as I have leakage problems periodically with it, but I just can't bring myself to do it yet.  Any advice would be greatly appreciated.
 
Thank you

AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/30/2009 8:43 PM (GMT -6)   
Hi there. Sorry for all that you have gone through. You might have better luck with your questions under the Ostomy section of Healing Well.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


Joe_Shmo
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/31/2009 5:51 AM (GMT -6)   
thank you

Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/31/2009 10:49 AM (GMT -6)   
I think a lot of people here have had success with j-pouch surgery, though you'd have to ask them. I think someone mentioned that with a J-pouch it's a lot like urinating, you go more often, but it's quick and there's no real urgency.

I personally would rather have to poo a lot out of my butt than poo into a bag the same amount.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/31/2009 10:54 AM (GMT -6)   
I hope that suebear sees your post and replies. She has a jpouch and seems absolutely thrilled with it! She has said many times that she doesn't really know how many times she poos (she says "empty my pouch" though, I believe) a day, because it's quick and not urgent, much like urinating. She's also an avid hiker and does long backpacking trips with no problems.

Really, I'm so thankful for suebear being on this site. Her posts made me realize that if my UC gets bad enough that I have to have surgery, that I'll very likely go on to live a completely normal life and be glad that I'm done with UC.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

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