having a colectomy, soooo many questions......

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rcn96
New Member


Date Joined May 2010
Total Posts : 5
   Posted 5/24/2010 10:33 PM (GMT -6)   
I know there are 35 or more threads on colectomies, but trying to sift thru them all to find the info I want/need is making my brain hurt. If you'll indulge me, I'm just going to give you minimal background, list my questions, and then anyone kind enough to respond either here or privately by email (chanie911@yahoo.com) I'm incredibly grateful.
 
Me, the super-abridged version: 27, single, NO FAMILY, living in NYC apt w roommates (not reliable as caregivers). CIP/colonic inertia since birth, GP since 2008, GERD, hiatal hernia, SIBO, malabsorption, (overall bad motility, now med-resistant), plus lots of other medical stuff....
*WILL BE HAVING COLECTOMY (LAPROSCOPIC)WITH ILEORECTAL ANASTAMOSIS SOMETIME AROUND JUNE 21*
 
ok, since i'm totally on my own i have a LOT to plan, and need to know as much as possble what to expect (also so i know how much/what kind of help i might need to ask for)
 
1) pre-admit/admit/day of surgery....?
2) post-op--how out of it were you? for how long?
3) how long in the hospital and why? at what piont did you come off of tpn, catheters, (able to wear real clothes), etc?
4) nutritional step-up? was it in hospital? at home? both? who directed?
5) discharge from hospital--when? how "able-bodied" were you? did you need home nurse services? how much help did you have/need at home? what were the first few days/weeks like? also, any supplies i should have on hand? (i'm not supposed to have an ostomy unless something goes wrong)
6) how long until you really felt like yourself again?
7) are there any kinds of "help" you can think of that  i might need and not b thinkin of?????????
8) complications??
9) also, i have problems (already) with dehydration and electrolyte maintnence. has anyone had trouble with this since the surgery? how do you manage it? (i take meds and drink lots of gatorade now.....;P)
 
thanks in avance!!!

Post Edited (rcn96) : 5/25/2010 5:32:11 AM (GMT-6)


pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 5/25/2010 8:27 PM (GMT -6)   
hi

I am almost 24, from Germany and was diagnosed with CIP that affects my stomach (=GP), partially my small bowel, my colon (=CI, colon was finally removed after several resections that left me with almost no colon but did not do anything for my severe constipation, nausea and pain ) and my bladder.
I have an ileostomy due to rectal involvement and a permanent bladder catheter to the urinary tract involvement. I am not able to push stools out and to empty my bladder ar all any longer. Depsite the catheter I continue to have bladder spasms and pain.
I have a very long history with extreme suffering and false diagnoses (IBS, anorexia, psychosmatic disorder etc)

I also have had troubles with SIBO and malabsorption which are better since ileostomy although thy have not disappeared. I am also able to eat more since surgery, eating prior to the ileostomy was pure ordeal and I barely managed to eat 400kcals a day.
I have also had a nasal tube for additional feedings but i did't gain weight this way, so I have been on parenteral feedings since October in addition to what I can eat orally.

If I were you I would unergo rectal testing since a rectum that acts as an obstruction could play havock with you and your small bowel and could worsen small bowel motility. I know this by own very painful expereinces. Have still problems with the rectal stump. In my opinion it is best to go for an ileostomy instead of an ileorectal anastomosis fpr everyone who has overall dysmotiliy. The small bowel has to work less with an ileostomy than with an ileorectal anastomosis

How have you been diagnosed and when? After birth or later? If it was later has your condition been worsening over the years? Why have you decided to undergo colectomy now and not before?
Do you know which part of your GI tract is most affected - the small or the large bowel?
Do the surgeon and GI doc know about your OVERALL dysmotility? Normally, with CIP they don't perform colectomies since this procedure can speed up the deterioration of the small bowel, especially with an ileorectal ansstomosis.
Sarah

Post Edited (pelztier86) : 5/25/2010 7:33:54 PM (GMT-6)


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/25/2010 8:44 PM (GMT -6)   
I have an ileoanal anastomosis due to UC; similar surgery but for different reasons. I had my surgery 9 years ago.

1. Pre-admit included chest xray, blood work, EKG.
2. Admitting day started the last colon cleanse I'll ever have to do!
3. I had a 2-step surgery. First surgery created jpouch and temp ostomy. In hospital 7 days. Catheter out on day 3, tubes and drains were removed over the next several days. No real clothes until day 7, discharge day.
4. Started eating day 5 or 6, can't remember. No nutritional directives. Eat what you want!
5. I live alone, 2 hours from hospital. I went home alone and was FINE taking care of myself. I had friends who offered to help but I didn't need it. I was off all pain meds before I left the hospital so I was okay to drive. An ET nurse came to my house once or twice to help with picking the right ostomy supplies. I credit my recovery to my SURGEON who demands his patients get out of bed the day following surgery and start walking. He does not discharge patients until they can walk a full mile! So, walk, walk, walk and continue to walk when you get home. I was tired but okay in the first few weeks.
6. I don't know how long it took for me to feel myself again but I did return to work fulltime 3 weeks post surgery. I was bored at home and felt ready to go back to work.
7. Be prepared to not being up for anything in the hospital. Don't bother bringing books, you will have the attention span of a gnat. It was all I could do to read magazines and I'm a huge reader. Music helped me. Take a bathrobe and slip on shoes for walking the halls.
8. I had no real complications
9. I don't have hydration issues, I seem to be in the minority. But when I do long hikes (50-200 miles) I do drink Vitalyte. It's way better than the commercial crap. You can read more about it at www.vitalyte.com It has less sugar and more potassium, I believe.

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

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