For those of you that have had the surgery how did you know when you were "ready?" How did your family/friends/etc. cope with your decision?
Here is my breakdown of all my medical ailments regarding my "colonic inertia." 2005-2008
(2007-2008 - more frequent bouts - once a week)
Some gastro problem - severe diarrhea, vomiting, laying on the bathroom floor, unable to control both - went to doctor - 3 IV bags, couldn't eat/drink for days)August 2008
Went to after hours - thought I had appendicitis - sent to ER
CAT scan - determined I had terminal ilietis
Stayed over - met with gastroenterologist - decided to get colonoscopy
During visit lots of anti-nausea, dilaudid, etc. - made me hysterical and still threw up..
Colonoscopy - inflamed - diagnosis - Crohn's
Follow-up - began taking Pentasa
alternating diarrhea/constipation - extreme discomfort, fatigue (for about
taken off Pentasa, began Miralax - lots of discomfort, nausea, hemorrhoids
Use of enemas/suppositories - tried probiotics, fiber supplements, laxatives, stool softeners, etc. - all gave worse symptoms
Second colonoscopy, CAT scan, SMART pill - looked "normal"
Took blood testing for thyroid, celiac diseaseNovember 2008
Celiac panel came back abnormal
Went gluten free for over two months
Symptoms did not improve
No bowel movements without enemas.
Chronic constipation/IBS diagnosisMay 2009
Began various anti-depressants, anti-anxiety medications
Began therapy - bi-weekly to now monthly
Diagnosed - panic disorder, generalized anxiety disorder without agoraphobiaDecember 2009
Food poisoning - first thought it was very bad constipation - then turned to diarrhea/vomiting (friend also it as well). Went to ER. Non-stop vomiting. IVs.. anti-nausea medication. Sick for several days (no diarrhea past that initial day)January 2010
Sitz marker test
Showed around 20 markers in various parts of colon
Diagnosed as colonic inertia
Again took blood testing for thyroid, celiac disease
Prescribed AmitizaMarch 2010
Car accident - transported to ER via ambulance - anti-nausea, dilaudid in hospital - prescribed various medications
Took Ibuprofen about
3 weeks after
Clay colored stool
No improvements from Amitiza
Took anorectal manometry - "high resting pressure consistent with constipation"
Added fiber pills, more Miralax, etc. to enema routine - severe nausea/vomiting / iquid stool, unable to pass without enemas
Began taking rectal promethazine (sometimes unable to because of the severe fatigue)April 2010
Stopped taking Amitiza (not formulary and it wasn't do anything)
Scheduled to take electromyogram, pudental nerve study, defacography (next Tuesday)
Currently on pramosone, Miralax, enemas, Lamotrogine, Cymbalta, Zovia, Flonsase, Claritan, multi-vitamin, Xanax as needed (maybe 1-2 times a week), occasionaly Promethazine for nausea when I'm not working
Most mornings I cannot eat (can drink) any breakfast until around 10-11.
Usual symptoms: extreme gas, bloating, nausea, lower back pain, "pushing" feeling against my coccyx, acid reflux, occasional "light" vomiting
I'd say I use several enemas every 1-2 days.
Seen 2 gastroenterologists. On second colorectal surgeon.
Surgeon says 50/50 chance I'll have to get a sub-total colectomy.
At this point I'm READY to get it taken out. I feel like I have exhausted every avenue and I've taken so many tests and there isn't anything else they can do for me (my GI doc even pretty much said we can try various medications but basically we're just treating your symptoms and I can't do anything else).
For me, I have pretty good support from most people. Although very few know how horrible I feel and the emotional toll it has taken on me.
The line I hear most, "can't you...?"
From what I've read around here people understand that eating more salad and bran for breakfast isn't a solution for some of us.