How do you deal on a daily basis?
0
Horrible - 0.0%
3
I have my days - 50.0%
1
OK - 16.7%
0
Good - 0.0%
2
Excellent - 33.3%

 
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snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 7:42 AM (GMT -6)   

All ready prone to anxiety and depression I take my meds to combat that.  I'm fine until I'm spending hours and hours of my life in discomfort and pain. 

How do ya'll deal with the everyday agony?  I'm not suicidal, but sometimes I just want to go check myself into the hospital and tell them to rip my colon out.

It seems to go in waves for me.  One week I might be doing OK, but then another week I'm in constant pain, nauseous, and ready to fill out disability paperwork.

I start biofeedback in a few weeks which I don't think will be promising.  I try to stay optimistic, but its tough when you spend more time in the bathroom than in bed.

 

/end rant


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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/28/2010 7:56 AM (GMT -6)   
Have you considered surgery?

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


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 7:57 AM (GMT -6)   
Yep. They won't opt for it until they've exhausted every possible solution.
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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/28/2010 8:12 AM (GMT -6)   
its not their choice! its YOUR choice, find a different GI, or insist on seeing a surgeon. I only went through four meds before i went to surgery.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 8:14 AM (GMT -6)   
I've seen two surgeons and both have strongly believed I try biofeedback first.

I'll try to be more demanding after biofeedback - ends at the end of August.

Maybe a surgery date in September?
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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 6/28/2010 8:22 AM (GMT -6)   
it is called quality of life. it is also your choice. If you quality of life is affected that is every reason to go for the surgery whether they want you to try biofeedback or not.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 8:23 AM (GMT -6)   
OK. If biofeedback doesn't work, I'll get surgery :)

Thanks guys.
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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/28/2010 10:05 AM (GMT -6)   
Just make sure you rule out slow transit issues of the small intestine before you opt for surgery. If you have slow transit issues of the small intestine surgery won't improve your situation.

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


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 11:17 AM (GMT -6)   

suebear - They've tested for my small intestine and everything is in working order.

My anismus is what concerns them most about the surgery.  If that isn't working - they say it is pointless to remove my colon.


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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/28/2010 12:17 PM (GMT -6)   
snugglesaurus~your anismus wouldn't be an issue with a permanent ileostomy, right? Are you trying to avoid an ostomy?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/28/2010 12:22 PM (GMT -6)   
Definitely trying to avoid an ostomy. I just want 95% of my colon removed.
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, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA

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