Ostomies for Crohn's Colitis?

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Probiotic
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Date Joined Mar 2007
Total Posts : 2832
   Posted 1/20/2009 9:55 PM (GMT -6)   
I am dx'd with UC but it shows alot of ambiguity with it being possibly Crohn's (Crohn;s Colitis).  My GI says that if it is actually Crohn's then a j-pouch would merely spread the Crohn's to the now unaffected small intestine.... yet I see many posts here from Crohnies who have had ostomies.  What is the deal?  is the "spreading to the small gut" issue overblown or does an ostomy as opposed to a j-pouch cure the Crohn's colitis?  Thanks.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/21/2009 8:31 AM (GMT -6)   
I THINK since Crohn's affects the entire digestive system, an ostomy of any kind is not a cure. I have Crohn's/colitis and an ostomy. It did not cure the Crohn's.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/21/2009 10:11 AM (GMT -6)   
if it's crohns it wont cure it, but it will take out part of the problem. A bunch of the people on here have crohns and after getting ileos they are med free and in remission.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/21/2009 3:35 PM (GMT -6)   
... I'm one of them! :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


vintageman
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 1/21/2009 4:38 PM (GMT -6)   

I was dx'd with Crohn's Colitis, my disease being confined to the colon down, no small bowel disease. My impression is that disease will generally reoccur downstream from the site of surgery.

There is no "cure" for Crohn's, but removal of the colon, rectum etc is as close as you can get when the small bowel is not involved. I've been disease free for 12 years, but you never know if it will come back....and that kinda sucks. 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/21/2009 4:55 PM (GMT -6)   
Thanks, and great to hear your success stories. I am UC officially but virtually indeterminate colitis and hear all these horror stories about how you can't chuck the colon if you aren;t 99% sure it is truly UC... but it does not sound to me as if even then the spreading to the rest of the system is that inevitable, or as onerous as the original disease. Still, it makes for maddening decisions.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm, TSO again
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/22/2009 6:21 AM (GMT -6)   
Probiotic,
Have you ever had a fistula? It's a tunnel from the diseased area to another area and is something that Crohn's does, but UC doesn't. You can remove the colon either way, but if you have UC, surgery is a cure.

If you have Crohn's, but never had it in the small intestine, then the chances are low that it will ever show up there after surgery. That's what my gastroenterologist told me, and since she's an expert in the field, I believe her.

Another huge benefit to surgically removing the diseased colon and rectum is to eliminate the chance of ever getting colon or rectal cancer. That was a big deciding factor for me.
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/22/2009 9:50 AM (GMT -6)   
No fistulas, structures, or for that matter, any disease outside the colon, flchurchlady. Good to hear what your GI says... Like I said, one of my GI consultants made it sound almost inevitable that it spreads. Actually, I was told of three of their "UC" patients they had who ended up with crohn's post surgery (thouhg they are reportedly still happy because their colons were chopped liver as opposed to mine which is bumbling along with mostly pain as an issue, but that is thanks to some pred dependence that I do need to end one way or the other).
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 1/22/2009 12:50 PM (GMT -6)   
Like you, I have indeterminate Crohn's Colitis, limited to my colon, no fissures. My surgeon who is a researcher, has proposed a new category of diagnosis for us indeterminates, and he has found (so far) that removing the colon is curative for this group, without recurrence. He feels strongly that a j-pouch will be successful for me. I really needed the colectomy, due to 18 months of prednisone dependence and horrible side effects, and excruciating pain. I feel so much better now, with the temporary ostomy, that frankly, if the j-pouch ends up not working and needs to be reversed, I will still feel better off than with my colon.

It definitely makes for a torturous decision-making process, I remember well. Hang in there, and just let yourself experience all the feelings... you will figure out the right choice for you in time.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for '09 to form j-pouch


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/22/2009 1:06 PM (GMT -6)   
I am one who had sm/lg bowel and rectum involvement with my Crohn's diagnosis. I've had no problems in my sm bowel since my first ileo about 9 years ago...just had the proctocolectomy last year and both my surgeon and GI believe that 10 years is a good mark...if a person hasen't had problems in the small bowel in that time, the chances reduce every year after. And, ironically, 10 years is the mark where someone with Crohn's could start to see a higher risk of cancer...So, I gambled and will live with whatever comes my way. At least this way, I AM LIVING:)

p.s. I am also MED FREE for the last year

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/22/2009 2:24 PM (GMT -6)   

OHIO76,

Dr. Fazio told me the 10 year mark as well.  For my 10 year anniversary, I had a party of sorts.  It was a celebration that I had made it that far disease free and have been disease free since then too.

 


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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/23/2009 6:48 PM (GMT -6)   

vintageman,

That 10 year mark is great news for you, since you have been disease free for 12!! smilewinkgrin


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


vintageman
Regular Member


Date Joined Oct 2008
Total Posts : 28
   Posted 1/24/2009 9:20 PM (GMT -6)   

The 10 year benchmark IS good news...I hadn't heard of that before. That tidbit was well worth dropping by here tonight !  So I guess 12 years for me is a pretty good sign.  Now, if I could only fully recover from the A&P I had last July....takin a while to heal up. Patience was never one of my virtues ! :-)

Mike


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 2/16/2009 10:03 AM (GMT -6)   
I can tell you that I was diagnosed with UC at age 23 and had a very acute case.... had the jpouch surgery a year later...the biopsy at that time was conclusive for UC....6 years into having the jpouch I started with pouchitis and it has remained chronic ever since...I can tell you that pouchitis for me was tolerable and preferable over the pain and suffering I endured with UC....now however, the pouchitis has moved above the pouch...I now have a stricture between the pouch and the ileum and the prometheus test is "consistent with crohn's disease"...and boy am I suffering....it's like living the UC all over again...I'm on a lot of meds and now considering remicade...I couldn't believe that I could have UC and 17 years later develop crohn's...apparently it is not that uncommon...it all appears to be one disease to me...now, I had to have the jpouch as my case was acute and I was going to lose my colon anyway....if remicade or humira had been around in those days I might not have lost my colon...my point is, before you remove your colon, know that you tried everything first, then you will have no regrets...take care....debbie
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