Diagnosed with Colonic Inertia, is Total Collectomy a solution?

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zerrar
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/4/2009 5:48 AM (GMT -7)   
Hi guys, I am new here and would like your valuable experiences. Just a small med background, I am now 28 years old, suffering from severe constipation for 10 years now (1BM every 2 weeks+). After doing test like: MRI, two zitmark tests and 2 colonoscopies etc, I have been diagnosed with colonic inertia. I am faced with two options either go laxatives(huge quantities of the equivalent of miralax) for life or have a total collectomy. I am really tired of laxatives and cathartics, they drain my energy, headaches, bowel pain. Even worse now days that my bowel is getting used to them I have to increase dosage even more and that creates more bowel spasms and pain :(

I have already talked about total colectomy with my doctor and has informed me with possible side effects. How everyone feels about and what are your results? I have read, about going non-stop in the bathroom afterwards, pains for long periods of time, some have report a downfall in their sexual activities and that their life has been negatively affected by the operation.

Thanks all and hope the very best :)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/4/2009 3:17 PM (GMT -7)   
First, I did not have a colectomy due to CI; mine was due to UC. But from what I have seen from those who have had CI is that the surgery can be a success IF you can determine that you have no motility issues with your upper intestine. Those that are unhappy are those that found out after surgery that the problem just wasn't related to the colon.

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


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/4/2009 3:57 PM (GMT -7)   
I have CI and it is hard to say what the answer is without a viable cure.  Many patients have had a total or subtotal colectomy due to CI and the results vary depending on the patient. It is my experience that a total colectomy is more favorable than a subtotal.  One of the factors is whether or not a motility problem exists in your small intestines or not. Personally, I found the surgery to be helpful.  It wasn't a cure and I have to eat limited foods, but without the surgery, I probably wouldn't be here.
 
I hope this helps. Good luck with your surgery.
Amey
 
Reversal 9/2009 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 12/4/2009 7:47 PM (GMT -7)   
Zerrar,
I did not have CI, but from reading about those who did, the patients who have normal motility of their small intestine AND no pelvic floor outlet issues with their rectums have the best outcome as the small bowel would be attached to the rectum when the colon is removed.

From what I understand, at first you can go 10-20 times per day, but after awhile, the small intestine gets the idea that the colon is no longer part of the system and it slows down to adapt. Then from what I've read, people can have 3 or 4 or 5 bowel moves per day.

Prior to making a decision, you really need a full evaluation of motility of the small bowel and a full work up of the pelvic muscles that control the rectum. Tests for this are: small bowel transit test, defecogram, emg, anorectal manometry, pudental nerve terminal latency test.

George Washington Univ. Medical Center, Cleveland Clinic, Mayo Clinic all have these complete testing facilities. Make no decision until you have a thorough work up.

If possible and you do have the total colectomy ask about having it done laporoscopically to minimize the chance of adhesions forming on the small bowel (something you do not want!) Good luck, Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/6/2009 2:09 PM (GMT -7)   
hi zerrar,
i had CI and had the surgery on Aug 16 of this yr. they removed my whole colon, but leaving the rectum and attached my small intestine to the rectum. as far as the healing proccess, it did take time, but after about 6 weeks i felt 100% better, didn't need pain meds at all and felt i was back to my normal self.

the surgery did improve things for me, but it's not a magical cure. i still have issues with constipation, cuz my pelvic is not functioning right. i still need to go through another series of tests to find out why exactly i'm still constipated. i'm very limited with what i can eat, but still it's much better than before surgery. before surgery i couldn't eat anything. at least now some foods are o.k for me.

the only reason why this surgery wasn't a huge success for me like it was for some, is b/c i waited too long, for yrs, and all of this waiting caused further damage to my pelvic floor.

as Rorsemary said, you must evaluate your pelvic floor, so you can know that when the stools reaches the rectum in a reasonable period of time, it can be evacuated.

defecography and manometry are the 2 tests to show the abbility of the rectum to evacuate.

i wish you all the best!


Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


zerrar
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 12/7/2009 3:37 AM (GMT -7)   
Thanks alot for your replies, as I feel I am not alone facing the same currently incurable and inexplicable problem :)

The doctor also told me about the 3-5 bowel moves per day, but that a small percentage has either again constipation or 10-20 times bm per day for life. Furthermore, what I would like to confirm is whether the more laxatives you use, the more the pelvic flood deteriorates.

Sorry to hear 2b ColonFree about your troubles, I wish all the best to your recovery. May I ask you whether, knowing the result, would you do it though?

Unfortunately, I am not in the US, but EU and some of the tests mentioned aren't performed here for CI but will try and see what we can do :)

Post Edited (zerrar) : 12/7/2009 3:44:52 AM (GMT-7)


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 12/7/2009 10:06 AM (GMT -7)   
thanks zerrar, and yes, i would definitely do it all over again. before surgery it was an impossible situation, it was too miserable. now it's a lot more tolerable.

i don't think my pelvic probs are due to the use of laxatives. i think it's more b/c of bearing down so hard that may have caused a prolapse/rectocele, or both.

i really hope you find a way to have these tests, as they are most important to make sure you don't have still issues post op b/c of your pelvic.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

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