Fellow Crohnnies with ostomies....recurrence? Maintenance meds?

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LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/25/2008 10:07 PM (GMT -7)   
To my fellow Crohnnies....please help me by leaving a short post if you can! :)
 
I had a proctocolectomy with ileostomy due to Crohn's...and now that I am feeling well and not on any meds, am have been thinking about recurrence rates, and if I should be on some type of maintenance med (though I really don't want to be if I don't have to...).  I am a worry wart by nature, unfortunately...!
 
If you have Crohn's and had an ileostomy...
 
1.) Have you ever had a recurrence of Crohn's symptoms in the small intestine?
2.) What did your surgeon say was your % chance of having Crohn's again?  (Mine said about 20%, but I was looking online, and I don't think doctors agree on that stat...)
3.) Are you currently on a maintenance med (like immuran or 6mp) to prevent Crohn's from recurring?
 
Thanks!! :-) :-)

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 6/26/2008 8:21 AM (GMT -7)   
1) It has been 2 years for me and so far I have not had any symptoms--and I keep hoping and praying I never do again!!!

2) My doc said only about 10% of Crohn's patients are 'cured' by surgery. Although he never said such a thing to me I know he does not believe that I am one of those lucky few.

3) I currently take no maintenance drugs b/c the drugs either have zero effect on me or I have bad reactions to them. I often wonder if I have a relapse just what meds I would be given; during my 15 yrs of constant flare I exhausted every avenue available to me.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/26/2008 6:47 PM (GMT -7)   
i think ce ce is med free, i know she had crohns, i have crohns and im off all meds except humira, im on that b/c we thought it would heal my perianal disease, i recently found that this isnt the case...
dont know where i'll go from here, but alot of people are med free
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/27/2008 10:14 AM (GMT -7)   
Erin,
 
I never had Crohn's in the small intestine, and my gastroenterologist told me, because of that, it will probably never show up there. :-) That was the best news I've ever heard!
 
It has been almost two years since my proctocolectomy, and I have been disease-free and medicine-free since surgery.
 
She said that there is no reason for me to be on maintenance medicine if there is no active disease to treat.
 
Hope that helps!
 
Cece


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 6/27/2008 4:54 PM (GMT -7)   
Two more things: 1) I think there is someone on this board who has had an ostomy since '84 and is still symptom free (sorry I can't remember who!!)
and 2) I think meds after surgery really depends on several factors like the severity of your disease overall as well you and your doctors feelings about it.

LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/28/2008 8:42 AM (GMT -7)   

Thanks for the input, ladies!

Cecilia - I am a case similar to yours in that my small intestine has never had Crohn's--I am so glad you have had such great results since your surgery!!  I hope I follow the same path. :-)  

Jenjen--wow, only 10%... sad    Did you have Crohn's in your small intestine?  My surgeon said, like Cecilia mentioned, if your Crohn's is only in the colon/rectum area, you have a lot higher % chance of not having Crohn's in the future after ileostomy...

Praying...I hope everything is going well for you!  Is your doctor going to give your perianal disease more time to heal? 


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 6/28/2008 11:00 AM (GMT -7)   
I was told that there were some small spots at the tail end of the small intestine (which I assume they removed!!). However, my problem areas were always my rectum and transverse colon.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/28/2008 8:01 PM (GMT -7)   
Jen,
Peggy's had her ileo since '84. She had Crohn's in her small intestine before surgery and has been disease-free and maintenance med-free ever since. :-)
Cecilia

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/29/2008 9:03 AM (GMT -7)   
Yep, it is me!!! No CD recurrence since my surgery in '84. I was told once you hit the 10 year mark, chances are you are home free. I know I worried for the first several years about every little twitch I felt. DON'T. Just live life now that you are pain free. Quit worrying until you have something to worry about. Believe me, I know that is easier said than done.

I have never taken any CD maintenance meds, tho I do take immodium, bentyl and some other stuff as maintenance drugs.... but no 'roids or anything of that nature.

Just be sure to have labs done occasionally to check B12, folic acid and other levels. I'm sure they will watch your white cell count if you have any issues too.

Go live life!!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


LittleE
Regular Member


Date Joined Mar 2008
Total Posts : 137
   Posted 6/29/2008 7:06 PM (GMT -7)   

Peggy,

Thanks for the reply and advice :)--I know you are right that I should just be thankful that I am feeling great now and not worry about the future...your story of being Crohn's-free for so long makes me feel good/hopeful!

I think I am going to have to get B12 shots in the future...not quite sure how that works, but my surgeon said I would not have to get them until about a year after my surgery as it takes awhile to depete the body's store...

Anyway, glad to see you posting and hope all is going well, Peggy...I read your other post about your blockage and I can relate (had one right after my ileo surgery...).  Please DON't be sorry for venting at all---you are always so positive, and venting to people who know where you are coming from can make you feel better! :)  Hope the pain has gone down some and you are feeling better soon!!

Erin


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/29/2008 7:56 PM (GMT -7)   
Peggy gives the best advice, doesn't she?
 
A couple of weeks ago, I felt some pain in my abdomen and started wondering if it was the Crohn's coming back. Then, I realized that I had been eating raw broccoli on my salad at lunch, and it was just gas pain! I've since stopped eating that, and the pain has gone away. I'm learning to relax more, not worry so much, and to stay away from raw broccoli.
smurf  Cece

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 6/30/2008 5:29 PM (GMT -7)   
well...the doc is now saying that its unlikely for my rectum to be saved....my ileostomy was supposed to be for six months....now theyr talking colostomy for life, but i'm not quite buying into that theory just yet...i'm still "praying for healing"lol
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Angela101
Regular Member


Date Joined Mar 2005
Total Posts : 79
   Posted 7/4/2008 1:05 PM (GMT -7)   
Good luck with your doctor's visit!
   Everybody seems to have a different story so I am not suprised the doctors dont agree on the stats.
Unfortunately for me I have not had much luck after surgeries.
  I was dx'ed with Crohn's in October 2003 and by April 2004 I was in and out of the Emergency room every weekend because of the pain.
   I did not have much choice as prednisone was not working and I had my first surgery Easter of 04 (they removed 2ft of small intestine).
   6 months later the disease was back and had spread to 50% of my small bowel. I was put on Prednisone again and a year long wait list for a GI Specialist. 
   The specialist put me on Imuran which didnt seem to work and unfortunately in September 2006 I developed a perianal abscess and still had active crohn's.
   A drain was inserted and I was back on prednisone waiting for the abscess to heal and my disease to settle down.  Nether of those things happened.
  The 6 months spent with a drain in my perennum were the worst 6 months  of my life! 
  In February 07 the surgeon and I decided that a temporary ileostomy was the next step.
The abscess, my butt, and my guts needed a break. 
  After this surgery I was disease free and  the ileostomy was supposed to be reversed after 6 months - but my disease came back and the abscess did not heal.
   Thats when they put me on Remicade.
Finally I am starting to feel better.
The abscess has not healed but is not causing me any pain.
I have been told it may never heal.
  My disease is in remission - for now.
  I am on a wait list to have my ileostomy reversed.
 
I was 30 when they gave me my ileostomy and was devastated when I was told that was the next step - things are different now and I am enjoying the freedom of not sprinting to the bathroom after every meal.
 
I wish you the best of luck - and I hope all these stories do not scare you, but give you strength instead!
  You are definitely not alone!
 

Dx/ed October 2003,
April 2004 - Surgery - 2ft of small bowel removed
Feb 2007 - Surgery again and a temporary ileostomy
Present - on Remicade waiting for surgery to reverse the ileostomy - Health Care System in Canada sucks - wait list is 6+ months.
 
 
 


sosueme
Regular Member


Date Joined Mar 2007
Total Posts : 53
   Posted 7/6/2008 1:14 AM (GMT -7)   
Hi Little E ,
MY story a little bit different I had my surgery in 87 , 5 yrs to heal and many weird tings happened but after all that i enjoyed a 12 yr remission almost forgot i had even had crohns no maintance drugs , life was good again ,,,,,but all go things come to an end . In 2002 after 2 yrs of feeling crappy and all the tests again , 3 or 3 times for some my crohn's was back just as severe as it was before so now is been 5 yrs on remicade and it just barely keeps it in check .Good Luck too you and hope your illeo does the trick. OH yes my crohn's was through my whole digestive system when i was dxed......again good luck to you hoping for the best.
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