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nymedic
Regular Member


Date Joined Nov 2005
Total Posts : 39
   Posted 2/25/2007 3:48 AM (GMT -7)   
Hello everyone,
 
     My name is chip and i'm a new ileostomy patient.  2 weeks ago I was dx with appendicitis and had to have my appendix taken out.  what we knew at the time was that i have had ulcerative colitis for 2 years and was on high dose steriods for those 2 years.  well long story short, when we talked to the surgeon about having my surgery, it turned into an open insicsion with removal of my ascending and part of my transverse colon.  the surgeon nor docs had any idea that it would even happen until he saw the amount of infection in my peritoneum, we were anticipating a laproscopic proceedure to remove my appendix but in order to save my life he had to remove part of the colon and make an ileostomy.  I very greatful to be alive, given a poor recovery prognosis of 50/50 survival from the amount of infection present in the peritoneum (he figures that my appendix ruptured about a week before i presented with pain and classic symptoms, and the reason why he figures that is due to the immunosupressive effects of the steriods, supressing the imflamation, pain, and fever).  anyway my question is how much has an ileostomy changed your life? i went from worrying about having to be close to a bathroom anytime we went out during flares of my UC to now being on "auto pilot" and eating foods i couldnt eat before with UC.  has the ileostomy been a blessing for you or a hinderance?? the surgery was only 2 weeks ago and i'm still trying to get used to the idea of having the ileostomy there.
 
I would greatly appreciate any input from you guys. 
 
Thanks,
 
chip
Pancolitis since May of 2005, Primary Sclerosing Cholangitis since April of 2006, and Deep Vein Thrombosis November 2006.  I'm a new daddy, new hubby, and new state within the last 10 months.
 
40mg tapered prednisone, 10mg lexapro, Illeostomy, 50 mg atenolol. 
 
Knowlege is key to defeating these diseases, you are your best patient advocate.


jbc
New Member


Date Joined Feb 2007
Total Posts : 3
   Posted 2/25/2007 2:04 PM (GMT -7)   
Hello Chip. I'm sorry what you had to go through to get to where you are now. Thank God you ok!

Now in regards to your question, it didn't change me much except I wore oversize shirt which I don't usually do. I didn't socialized as much as I used to due to my ileo making noise (gas). I was on low residue diet for 6 weeks after surgery. I didn't have problems with leakage with my bag like others do. I used convatec and they worked fine with me. If I think of anything else I will let you know. Hope this helps.

Regards
Jon

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/25/2007 11:35 PM (GMT -7)   
Hey Chip- it's a pleasure to have you here. I've had an ostomy going on 18 years now. And I have had every emotion pertaining to it. For starters give yourself a break. This is a new thing that you will definitely get used to. Also be prepared to have your mind play tricks on you. I was really bumbed that I would never be able to wear a Speedo. The funny thing is that I've never worn a Speedo before, never had a desire to before, and thought other guys looked  pretty funny in them!!!! At first you may think that it's a huge incomvevience and that everything is foreign to you. And you know what ,you'll be right!! A lot of new things are an inconvenience at first. Wasn't it an inconvenience running to the bathroom every 10 minutes. Wasn't the pain an inconvenience too. I bet in 6 months you'll be a pro at this and will be giving other people advice.
 
Also, just an FYI, I was 28 when I had my surgery. I thought my life as I new it was over. It took me a little while to realize I was absoluty right. My life was now better. No longer was I bogged down with constant pain, weakness, and many trips to the John. Having an ostomy had NO negative impact on my career. I'm a Publishing Executive. I have a house on the golf course, a gorgeous boat, plenty of money. And ,as my username implies, I collect Corvettes. I have a wonderful wife and son who I love very much. Please don't think I'm bragging. I'm just trying to prove to you that, once you have recovered, the only limitations you have are in your imagination. Good Luck. I'm looking forward to how your life has improved.
 
Regards,
Mike

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 629
   Posted 2/26/2007 7:57 PM (GMT -7)   
hey, i just had my surgery almost two months ago. best thing i ever did, should have had it done years ago. no regrets over here, i'm 25 and am looking forward to a life without all the pain, meds, and worrying where the nearest toilet is. this past week is the first week i've really left the house a lot and i'm amazed at how sweet it is to walk even just around the block and not have to worry about having to take a dump, haha. the bag is no big deal, you'll get used to it quite quickly, and no one knows you have it unless you tell them.

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/26/2007 10:28 PM (GMT -7)   
Matt hit the nail on the head. A couple of months after my surgery a neighbor and a few of his friends asked me if I wanted to do some midnite fishing.We were fishing off a couple of large rocks on eastern Long Island. I didn't catch a thing but had a great time hanging with the guys. I realized afterwards I could never have done this before my surgery. We were in the middle of nowhere, miles from the nearest bathroom.
I lead a very active lifestyle now. I play tennis, I boat a lot, I play golf(although I'm just a beginner and I'm pretty terrible), softball, and just about anything else I feel like. And, NOBODY , except my wife and son, knows I have an ostomy!!! Having an ostomy is 99% mental. As long as you've got a clear perspective you'll be just fine.
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