two ostomies and crohn's

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DM2010
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/16/2010 10:06 PM (GMT -7)   
I've have crohn's for about 11 years now. about 8 years ago i ended up with a temp colostomy after a failed anastomosis. last May I entered the hospital in an emergency situation and woke up with a ileostomy. they assured me it was temporary to give my rectum a break. about 3 months ago everything looked good and i feel absolutely fine. I want to have it reversed because i pretty much ate and drank whatever i pleased which i KNOW NOW wreaked havoc on my digestive system. am i crazy to want this? my doctors and esp my surgeon are planting it into my head that my crohn's will come back as soon as im reconnected which drives me crazy. i have never tried to heal myself using food and i'm not ready to give into a ostomy yet, i'm too young. i could just use some advice/hear some insight on those who have had more than one ostomy.

thanks confused

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 1/17/2010 4:49 AM (GMT -7)   
Hey DM2010,
I have an ileostomy due to crohns disease, just wanted to let u know I was told mine couldnt be reversed so my ileostomy was made permanent last july. I cant tell u if u should or shouldnt have the surgery but I think the docs have to at least let u know there is always a chance crohns will come back that is the nature of the disease. I dont know how old u are but u said u are too young so Im guessing u are perhaps in your 20s? I was diagnosed with crohns at 25 and i am now 47 but only got the ileostomy 10 months ago and even at my age I am having a hard time dealing with having to have this for the rest of my life but its better than the alternative. I wish I had an easy answer for you but I dont and no one will, but everyones advice will help steer u in the right direction. You are not going to know the outcome unless u try the reversal but its up to u if u want to take that chance. It can work for some and if u make that decision I hope it works for u, as I along with others understand how u are feeling. Sorry I am of no help really but just wanted to let u know u are not alone and feel free to ask away, Im sure someone will be along soon that is or has been in a similar situation to u and give u better advice than I am able to give. Take good care of yourself and please let us know what u decide. Good luck :-)

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/17/2010 6:03 AM (GMT -7)   
Hi, im due my reversal of temp ileo in 9 days time i was told by the surgeon and GI that as long as i get on the meds for crohns straight away along with the regular check ups, scopes ect, ect all should be fine.(for how long nobody knows) I'm willing to take that chance as i have had nothing but trouble with this ileo since day 1 Although if it had not been retracted and it hadn't caused me any probs i would of probably thought twice (maybe;-)) Good luck in whatever you decide to do. Bev x
Diagnosed at 13 now 43
Reversal of temp stoma scheduled 27th Jan 10 :-)
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)

Never be afraid to try something new;
remember amateurs built the ark, professionals built the Titanic.


Scott Crohnie
New Member


Date Joined Jan 2010
Total Posts : 16
   Posted 1/17/2010 10:54 AM (GMT -7)   
My rectum was also in a mess due to Crohn's and I was given a temp colostomy in 2001 at the age of 18. Recently my Crohn's has become worse and all my large bowel is also in a bad way and I'm having problems with fistulas/abcesses as well. I will be going into hospital next week to have my large bowel removed and will have a permanent ileostomy. My situation is a bit different that I no longer have any other option but since having the colostomy in 2001 I have went to Uni and had plenty of great nights out, continued to play football (soccer) until the Crohn's got worse and also got engaged two years ago. Getting a stoma at a young age is tough to get used to but has allowed me a greater deal of freedom I doubt I would have had been as well or as active without it due to the Crohn's. The fact am I'm now going to have a stoma for the rest of my life does not bother me am currently 26 and would rather have stoma than all my current problems.
 
Have the docs done any tests to confirm the current state of your rectum and colon? You say you are feeling fine the now but how were you before you got the ileostomy would it be worth the risk of going back to how you were? Crohn's is a horrible disease and if I was in your situation I would be reluctant to get the reversal in case it came back. I would just make sure you fully way up all the pro's and con's before making a decision.
 
Good luck.

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 1/17/2010 5:02 PM (GMT -7)   
I was dx'd with Crohn's at 20, had many fissure's/fistula's/abbcess' and all the other good things you can get with Crohn's. I had no bowel control and would end up with poopy pants at the most inconveinient places. Not cool for a young person trying to enjoy life. I would have to be up 2 hours earlier in the morning to make sure I had the proper amount of washroom time, and sometimes even that didn't help. I couldn't enjoy anything unless I knew a washroom was close....I could go on about how all the medications did nothing for me, I could wax poetic about how a simple fistula repair surgery caused me to have 3 strokes at 26....but in the end it was my colostomy which saved me and gave me my life back. Im 32 now and enjoying life like no other. If I knew that my life could be this wonderful with the colostomy, I'd have had the surgery 10 years ago!


-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/17/2010 5:23 PM (GMT -7)   
Can you tell us where your Crohn's is? I am assuming rectum/colon?

The question is not that it will 'come back' because it is still there doing it thing, it's whether you can live with the quality of life you will have when/if you reconnect.

I don't think eating or drinking pretty much anything you want is creating any 'Crohn's' issues...the food is not making you sick when you are eating it or causing blockages, right? The only way food would 'cure' your disease is if it is due to an allergy or gluten intolerance/Celiac. If you do go on one of those diets you might not get the true result while you have an ostomy.

This is a big decision that you have to make on your own...your doc's suggestion should be taken into consideration, but you have the ultimate choice (unless of course it's an emergency situation).

I, myself, have had 3 ileostomies...2 temp and my current permanent one. I am in my 40's now, but if I knew in my 20's what I know now, I'd have saved myself(and family) a lot of pain! People will still love you...at least the ones that matter...whether you have an ostomy or not!

Good Luck with your decision...if you do have it reversed and loose your quality of life, you'll at least know the other side is available...that helps take some of the mystery out of it:)

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 1/21/2010 8:26 AM (GMT -7)   
Allison77 said...
I was dx'd with Crohn's at 20, had many fissure's/fistula's/abbcess' and all the other good things you can get with Crohn's. I had no bowel control and would end up with poopy pants at the most inconveinient places. Not cool for a young person trying to enjoy life. I would have to be up 2 hours earlier in the morning to make sure I had the proper amount of washroom time, and sometimes even that didn't help. I couldn't enjoy anything unless I knew a washroom was close....I could go on about how all the medications did nothing for me, I could wax poetic about how a simple fistula repair surgery caused me to have 3 strokes at 26....but in the end it was my colostomy which saved me and gave me my life back. Im 32 now and enjoying life like no other. If I knew that my life could be this wonderful with the colostomy, I'd have had the surgery 10 years ago!

What a terrific post!!!!
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