left sided colitis and surgery?

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Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/1/2009 9:14 AM (GMT -6)   
I had two different GIs tell me different things - one doctor said no one does surgery for left-sided colitis, and another said surgery indications for left sided versus pancolitis is the same. Just wondering
which is true!

Also, if you have left-sided colitis, can you just have the "left side" or diseased part of the colon removed and use the remainder instead of a j-pouch?
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/1/2009 9:17 AM (GMT -6)   
I think that the decision of whether or not to have surgery would be more dependent on the symptoms you have and whether or not medications work rather than how much of your colon is affected. My doctor told me that someone who has just a few inches of inflammation can have just as bad of symptoms as I did, and I have pancolitis.

If you have surgery, the entire colon must be removed, even if only the left side is affected. That's because there's a very high chance that the remaining part of the colon could become affected, which would make the surgery worthless.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/1/2009 9:23 AM (GMT -6)   
fruitgirl said...
I think that the decision of whether or not to have surgery would be more dependent on the symptoms you have and whether or not medications work rather than how much of your colon is affected. My doctor told me that someone who has just a few inches of inflammation can have just as bad of symptoms as I did, and I have pancolitis.

If you have surgery, the entire colon must be removed, even if only the left side is affected. That's because there's a very high chance that the remaining part of the colon could become affected, which would make the surgery worthless.


That was my most important question, if you had to remove the whole colon. Thanks for the answer. I'm asking about surgery because although I'm getting better (no blood, less frequency, etc.) I still am experiencing a severe loss of motility. If I don't take miralax, I do not have the muscle strength there to push the stool out. I'm hopeful as the medication has more time to work the motility will improve and I can stop the Miralax, but wondering if the loss of motility alone will lead to surgery! I see my GI next week and I'm going to stop Miralax a few days before and see what happens. I tried a few days again and was in severe pain and unable to have a BM despite the feeling of urgency and cramping!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/1/2009 9:28 AM (GMT -6)   
Have you tried a fiber supplement and lots of water to see if it helps with the motility issue? But, maybe there's a chance the Remicade could help with that, too. My understanding of Remicade is that it can heal damage in the colon, where most of the other meds just calm inflammation. I don't know, though, just guessing!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/1/2009 9:44 AM (GMT -6)   
I guess I could try the fiber, I have used fiber before my flare because I tend to be constipated. I'm going to stop the miralax over the weekend and substitute with the fiber and extra water! Good suggestion!
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/1/2009 10:21 AM (GMT -6)   
I have left sided UC and did almost have to have surgery before I was able to get Remicade. My GI was pulling his hair out at the thought of my whole colon going because of just that smaller area, and because nothing he tried got me into remission.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 
.


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 5/1/2009 10:58 AM (GMT -6)   
Judy, I can't believe you flared for 5 years! I can't imagine flaring that long and being strong! I'd probably have had the surgery after 6 months!
The remission stories here about Remicade is what made me ask my doctor about it. I never had trouble getting into remission before but this time
I've been fighting a losing battle. I don't know how long remission is going to take, but something is making me better and I suspect it was that first dose of Remicade.
37 year old mom of 2.

Diagnosed with Ulcerative Proctitis 1995 (24 years old) / Ulcerative Colitis in 2000 (29 years old)
In remission for 4 years from 2005 - 3/2009 with colazol maintenance only.

Hospitalized for flare 3/23/09 - 3/25/09. Hospitalized 2nd time for same flare 4/17 - 4/22

Current Meds: Apriso 4/day, Prednisone 40mg per day, Rowasa Enemas 2/day, Culturelle

Had FIRST Remicade transfusion in the hospital 4/22/09


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/3/2009 8:06 AM (GMT -6)   
I had surgery for left sided colitis that was mostly limited to the last 2cm of my rectum.  My life was miserable with this tiny portion of inflammation.  It doesn't matter whether or not you have UC limited to the ascending colon or full blown pancolitis, surgery is performed on all cases if medication fails or quality of life was poor. 
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 5/3/2009 5:46 PM (GMT -6)   
I noticed talk of taking fiber - my doctor put me on Konsyl which is a fiber supplement which has no prescription but the pharmacy usually has to order.
UC diagnosed January 05
Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, dicyclomine (still flared), Remicade - 7 treatments (stopping because no dramatic changes), allergy shots (03-07), levbid, prednisone (been off since nov. 08!), rowasa
Current meds: Asacol 4 - 3x, Aciphex (acid reflux), canasa and rowasa alternating every other night, konsyl (fiber for bulking stool), multivitamin, caltrate 2x a day. probiotic (florasmart), astelin (nasal spray as needed for allergies), fosamax (bone density)

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