Colectomy, long term advice needed

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AZBloomer
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Date Joined Jun 2007
Total Posts : 5
   Posted 6/4/2007 11:24 PM (GMT -6)   
My husband had his large intestine removed August 2003 due to intractable UC.  He has a W pouch.  He has never re-gained his health.  I've tried to study the function of the large intestine, more than it being the part that takes the liquid out of what he eats.  It seems that most minerals/vitamins are absorbed in the small intestine.  I feel like I must be missing something of importance.  The surgeon didn't have any resources regarding this.  I would really appreciate some help figuring this out. 

Shaz032
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Date Joined Feb 2003
Total Posts : 1246
   Posted 6/5/2007 3:37 AM (GMT -6)   

Has he been checked out for pouchitis (ie inflammation of the internal pouch)?   

The main symptom for most patients is an abnormally large number of stools: an increase from 4 to 6 (on average), or more. Patients may also experience rectal bleeding, abdominal cramping, a sense of "urgency" before having a bowel movement, and fever. It's usually treated with antibiotics such as cipro and flagyl.

The large intestine is responsible for absorbing water and salts, potassium and magnesium.

Signs of dehydration include:

Thirst, dark urine, decreased urine, Sleepiness or tiredness, muscle weakness, headaches, dizziness and lightheadness.

A lack of salts and potassium can lead to painful cramping (esp in the calves of the legs while sleeping).

If the cause isn't found, maybe it's worth thinking about switching to a permanent ileostomy instead?

Good luck.


I have had an ileostomy for 31 years now due to UC.
 
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AZBloomer
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Date Joined Jun 2007
Total Posts : 5
   Posted 6/5/2007 1:18 PM (GMT -6)   
Thank you Shaz for your reply.  Actually he has had pouchitis twice and two blockages as well in the four years since the surgery.  My concern is not so much with the actual surgery, but with trying to rebuild his health and figure out what the large intestine's important functions are other than taking water out of his food.  He got sepsis while in the hospital and they told me he would die.  He's still here, and I want to take good care of him. I give him lots of vitamins/minerals/supplements and hope they are being apsorbed by the SMALL intestine.   Any other suggestions?  Resources? 

suebear
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Date Joined Feb 2006
Total Posts : 5692
   Posted 6/5/2007 4:11 PM (GMT -6)   

The w-pouch is really not practiced much anymore due to complications of function.  This surgery was replaced by the j-pouch which is considered the gold standard for surgery due to UC.  I imagine you live in the midwest?  I would highly recommend you and your husband get an evaluation at the Cleveland Clinic in Ohio.  There might be functional problems that could be identified there.  As for the role of the colon, as you noted it absorbs water and holds waste.  The small intestine is where nutrients are absorbed and your husband should still have that part, the terminul ileum.

 

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
 


AZBloomer
New Member


Date Joined Jun 2007
Total Posts : 5
   Posted 6/5/2007 6:21 PM (GMT -6)   
Thanks Sue.  Actually, we're even further west, Oregon.  I'd love to be able to go to the clinic you mentioned, I've been reading about it.  When you say there are complications with function of the 'W' pouch, in what way?  I wouldn't know even what to watch for.  He's not had anything that seems directly tied to the colectomy, but I'm wondering about indirectly.  The description of your medications is exactly like Dave's.  He was on prednisone for 5 years, and we went vegetarian for 4 years, and wheat/gluten free for three years.  Acupunture, naturopathic, herbs, and all the medicines you listed.  He's only 62 and was strong and healthy before this bend in the road.  Just trying to restore whatever we're able to.  Thanks again so much.  It all helps. 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/5/2007 7:01 PM (GMT -6)   
Wow, I didn't realize any surgeons in Oregon were practicing the W?  Okay, I suggest that you visit www.j-pouch.org a site set up for all pouch patients (j,w,s,t and k).  There are some terrific folks on that board that may have suggestions for you, especially with good doctors in Oregon. 
 
The functional problems with the W pouch have to do with emptying.  If emptying the pouch isn't one of your husband's primary complaints his problems could be unrelated to that.  I think you will get more opinions on the other site, there are over 5,000 members who have gone through any of these procedures.
 
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
 


AZBloomer
New Member


Date Joined Jun 2007
Total Posts : 5
   Posted 6/5/2007 7:30 PM (GMT -6)   
Yes, Sue, our surgeon apparently went to Great Britian to learn this 'W' pouch technique, so we thought it was the 'latest/greatest', but apparently not.  I don't think Dave has any issues with emptying, just the frequency, I suppose.  Maybe 6-8 times a day which sounds reasonable.  He was suppose to take Imodium with every meal, but then he had to strain, which caused bleeding.  Went back to the surgeon, he said, nope, you can't have hemorrhoids in there.  Went to the gastro dr. and he said, yes, there's quite a few hemorrhoids in there.  So, Dave prefers the liquid coming out rather than straining.  It's explosive for sure, but since we don't have anything to compare it to, it seems 'normal' to us.  I'll go read around on the pouch site.  Thank you very much.  Linda in Oregon

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 6/5/2007 10:40 PM (GMT -6)   
With the vitamin supplements (and any other meds), try and make sure they're in liquid form if possible. A lot of tablets (esp enteric coated - kind of like a hard shell) are made to be absorbed by the large intestine and therefore, will not work for those of us who are large intestine challenged. Extended release meds will defiitely not work for us.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


AZBloomer
New Member


Date Joined Jun 2007
Total Posts : 5
   Posted 6/6/2007 12:10 AM (GMT -6)   

That's good information, Shaz, thank you.  I suppose it would be best for all of us to have medications in liquid form.  I understand that there are tons of undissolved supplements in our water treatment system, especially calcium tablets.  I certainly am pleased to have found this forum.  Linda

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