update / non-profit

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snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 10/18/2010 8:47 AM (GMT -6)   
Haven't been on much lately.  I finish my second round of biofeedback and now I'm eligible for surgery since my numbers dropped some and I can pass stool without an enema.  I get my surgery date either today or tomorrow.  I'm getting a subtotal colectomy so I won't have to wear a pouch.
 
My dad and stepmom are adamently against it and my mom is freaked, but knows I've been suffering long enough and supports my decision.
 
It sucks because it is a huge thing and it really is affecting me emotionally and yet no one realizes how I feel about it.  Yes its my choice and I won't die without the surgery, but its still a big deal.
 
 
So other than that I've been thinking about creating a non-profit for either intestinal or gastro disorders.  There are lots for colon cancer and specific disorders like Crohn's and UC, but not a general disorder.  I certainly haven't seen a single one for colonic inertia.  Any thoughts?
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Currently: Biofeedback

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/19/2010 5:09 PM (GMT -6)   
Snuggle, I think we are all alone with the incomplete evacuation disorders, including colonic inertia, anismus, and intussusecption. It is so sad and such a misunderstood condition.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 10/19/2010 8:28 PM (GMT -6)   
It is such a misunderstood condition.

Like with many disorders I think some are different for everyone. When they said it could be partially psychological I was against the whole notion it could be. Now I think to some degree it is. Now that the "damage is done" (straining for so long) it is super difficult to reverse. With a rectocele.. you can't.

If I get off my Miralax/vitamins/routine I'm back to living on the toilet.

It is sad. "what do you mean you 'can't go'"? smhair
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Currently: Biofeedback

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/20/2010 3:34 AM (GMT -6)   
Snuggle, my push still does not work. I need to release mucous and it is quite a chore...I have to use enema after enema and even then, very little mucous is released. I am hopeful though that just maybe I am one of those who produces very little mucous????

Oh, my ileostomy works wonderful. it is so nice because it releases the gas too, so no more bloat. I mean, I still get a little bloated with dairy products and unfortunately I still can not enjoy any ice cream due to a lactose intolerance, but other than that, no bloating.

My life has changed dramatically for the best with the ileostomy. :)
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 10/20/2010 6:25 AM (GMT -6)   
Do you think you'll go ahead with the take down?
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Currently: Biofeedback

pswift520
Regular Member


Date Joined Sep 2010
Total Posts : 91
   Posted 10/20/2010 7:16 PM (GMT -6)   
I hate to sound like an idiot but can I ask "what is biofeedback"

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 10/20/2010 8:21 PM (GMT -6)   
Biofeedback is where you lay down (and/or sit up) on the table with two cords running to you. One is a sensor that is placed on your abdomen to detect movement and another that is hooked up to a sensor that you have inside your rectum.

There are two screens that show the levels of movement and the squeezing or pushing of your rectum.

The sensor also operates as an electrical current that can send pulses of electricity for stimulation.

While you do "exercises" you can watch on the screen how much your rectum is tightening or not (depending on your issue). A normal person should be flatlining while just resting. It is supposed to help retrain your muscles. The exercises are kind of like kegel exercises for your rectum.

Hope that makes sense.


My surgery date is now set for the 9th!
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Currently: Biofeedback

pswift520
Regular Member


Date Joined Sep 2010
Total Posts : 91
   Posted 10/21/2010 5:37 PM (GMT -6)   
Thank you for your reply, yes it makes sense. My next question is this. What is the reason for doing this. Is it something you do for yourself or does it help in the diagnosis of anything.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 10/21/2010 5:46 PM (GMT -6)   
I always show a flat line when bearing down to have a bm....I am weird I guess.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy
Take-Down-TBA
 


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 10/21/2010 8:40 PM (GMT -6)   
It is supposed to make the muscles relax. You can continue doing the exercises without the monitor at home.

That is weird, Tracy! :)
Diagnoses: Colonic Inertia, Rectocele, Anismus
Surgery: Scheduled November 9th - subtotal colectomy with anastomosis
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