what to ask the surgeon

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/15/2010 2:49 PM (GMT -6)   
hello everyone,
 
i need your help. i had a total colectomy 10 months ago, had the whole colon removed and the small intestine attached to my rectum due to colonic inertia. the surgery didn't solve my problem much, as it seems my rectum is not working right and blocking the stools from passing, so i still need laxatives. but when i take those, they bound me to the b/r for too many hrs a day and even then i'm not really emptied, so basically, my life still revolves around pooping and working so hard to have a bm.
 
so i've been thinking about it long enough and i've finally decided on having an ileostomy. they are going to disconnect the ileum from the rectum and create an end ileostomy. the rectum stays where it is, but will be disconnected.
 
i'm seeing my surgeon Monday and need you guys help on what questions should i ask him.
 
thanks for your help!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 6/15/2010 3:12 PM (GMT -6)   
I have my follow up appointment next week. I had my colon removed and never thought id ever have to wipe my butt again but Apparently I stilll have to poop out the mucus still being made?? I am going to ask my surgeon if its permanent? I read a previous post about someone having the same issue and going for another surgery to remove the rest of the anus? "I think" Yet another think no one warned me about..doctors, surgeons, nurses...Wish u fast healing and a happier life.. Celine tongue
Im a 37 yr old woman who was  diagnosed with crohn's colitis 1998.(symptom free for 10 yrs.) The last two yrs. Ive been on prednisone, Imuran, remicade, and humira. Getting a permanent ostomy bag.(sigh..)


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 6/15/2010 4:13 PM (GMT -6)   
Before proceeding with additional surgery I would try to rule out motility disorders of the small intestine if you haven't already. It seems others have had surgery only to find not much improvement and the reason why is the problem is not only down stream but upstream as well.

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


2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/15/2010 10:00 PM (GMT -6)   
thanks Celine! i will defenitely ask about that mucus issue. much health and happiness to you too!!

Sue, even though i may have a slow small intestine (nothing proven, we don't have the motility test for the smalls in Israel), in any case, from what i learned here, those with also motility problems of the smalls and stomach still benifited from the ileostomy, cause at least it solves the rectal blocking the flow and they say they feel much better with the ileostomy.

i do suspect my whole system is a bit slower than normal, but thankfully it is much easier to handle now that i don't have the colon, all it takes for me now is to drink a glass of fresh squized pear juice in the morning and that seems to get it all moving. the prob right now is that even tho it flows great with pear juice, the rectum is still blocking, so i go several trips to the b/r a bit every time. the ileostomy will bypass this blockage and i won't have to spend so many hrs in the b/r every day. so i believe this will be the right choice for me. i'm not happy it had to come to this, but it'll be better than the way i am now.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/15/2010 11:00 PM (GMT -6)   
Hi Hodaya,

Good to hear from you. It sounds like you have given this much thought and time. Your logic sounds correct. WIthout the rectal blocking (whatever may be the cause of it) an ileostomy will bypass that and you should be fine.

As far as questions go, I'm not sure how you'd word it, but it's important that the stoma come out enough to make a little spout so the poop drops into the bag, not a stoma flush with the skin so that the poop runs down your skin. The stoma nurse will have you come in and mark your stomach in several places as possible sites to put the stoma. Be sure and bend and move like you do in daily life. THey try to mark you where it won't interfere with your normal movements of your body. They will train you in the use of all the products while you are in the hospital. Go very light on food afterwards. And always chew, chew, chew and drink lots of water. I'd suggest to avoid nuts, seeds, peels to avoid food blockages. Think bland food well chewed and you should be fine.

This will give you LOTS more time for other things during your day as you only have to change the bag every 4 days or so and you get faster at it as you do it. I can now do it in 20 minutes.

Good luck, Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/16/2010 10:26 AM (GMT -6)   
thanks so much Rosemary :)) i'm very excited to finally do it, cause i know it should give me a much better quality of life. i also talked to couple of ppl here in Israel who have a stoma ana they both say how better life is with the stoma, if you're at a situation where the b/r controles your life. now with the stoma they are free and can do anything they want, go anywhere, travel and just live life.... i want that too, i've spent the past 17 yrs of my life in the b/r and i finally decided no more. but GOSH i really hope it works.

how much time do you spend on this in the morning and during the day?

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 6/16/2010 2:18 PM (GMT -6)   
Hodaya,  Gosh girl, is it maybe gas in the way ?  Untill my gas passes then eveything comes one air bubble at a time.  Are you constipated?  With hard poop?  They say that there should be no way to get plugged with your colon gone.   It has been 10 months for you maybe your sysytem is still getting use to the new plumbing?  Just what has been happening with you?
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/16/2010 2:50 PM (GMT -6)   
Leslie, it's not gas in the way, i don't have much gas. yes i'm very constipated. the situation is this, if i don't take anything to go, i won't have bms even if i eat soft-liquid diet. when i take something, eithe pear juice, sugar free chocolate, prune juice - then i'm bound to the b/r for too many hrs and even when i finish the whole proccess, i'm still not emptied, very uncomfortable feeling like this all day long. from surgery on things are just getting worse and usually the system slows down, not the opposite.

thanks so much for your concern, Leslie, you're very kind, but truly i think i'll be doing much better with an ileostomy and looking forward to do it.

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 6/16/2010 4:53 PM (GMT -6)   
Hodaya,   I sure hope it help you...Sometimes I feel full and not completely emptied and that will kind of make me uncomfortable and nausiash sometime...but I am still adjusting to everything.  I eat mostly every day one slice of bread with turkey and gravy on it for dinner, turkey half san for lunch with just mustard, and a piece of toast for breakfast.
 
Its hard to incorporate new foods cuz I don't how they will affect me, but salads are out for years as long as I am concerned, and raw anything fruit or vegies...  so I am dealing with sub-par nourishment.  Trying to do what I can.  I just hope and pray that this is a answer for you.  Have a wonderful day.
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/16/2010 9:36 PM (GMT -6)   
Hi Hodaya,

My body is still adjusting to life without my colon so I have to watch my sugar intake and totally avoid fake sugar as that can give me BAD diarrhea. BUT you are already without your colon so you can tell what will and won't bother you in that regard. Just remember with a stoma you have to chew, chew, chew, so no food gets stuck in the stoma when it comes out.

BUT assuming I stay away from all that sugar/fake sugar, total time per day in bathroom is like only minutes. WHen pouch is a third full I sit on the toilet, unroll the end of the bag, empty, clean around the inside and outside of the end of the bag and roll it back up (It velcroes). So that is all of 5 minutes. I do that maybe 6 or 7 times per day. Not a big deal.

I have the appliance change every 4 days. Each session only takes me about 20 minutes. Again, not a big deal once you learn how to do it.

So bathroom time will be WAY down for you. You will no longer have to look at porcelin (did I spell that right? :-) all the time. So it should free you up to do different things.

So that is my time frame with an ileostomy so far.

Rosemary

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/17/2010 5:29 AM (GMT -6)   
Rosemary, thanks for your answer, sounds GREAT to me!!! yeeeep, im so looking forward to not spending my days in the b/r, cant go on doing this anymore! what's the size of a standard bag? how much does it contain?

Leslie, i know what you mean, but you will gradually be able to eat a bit of salads, not to much, but in small amounts and well chewed it should be o.k. i'm sure. keep working on figuring out which foods work for you and which not, it's a CHALLEGE, believe me, i know. hope you keep doing well :)))

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 6/22/2010 5:07 PM (GMT -6)   
Bless you Hodaya!  You know I have been following your situation forever and I am so happy for you that relief (ie ileostomy) is in sight for you.  I felt so great when I had mine and never had to worry about laxatives etc as you do now as well.  It will give you your life back.  I know how long and seriously you have weighed things in your mind (after trying all else) before coming to this decision.  I feel in my heart you are making the right choice.  An ileostomy will free you from centering your life around the bathroom.  I love you my Friend...take good care and keep us all posted ok???? {{Hugs....Cheryl}} :-)
 
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 Ileostomy Reversal March 9/09
Parastomal hernia surgery Oct/09


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/23/2010 11:18 AM (GMT -6)   

oh, i love you so much too, my dear friend Cher!!! you've always been so awesomely supportive and helpful, your love just worms my heart so much!! it's good to know that you felt good with the ileostomy and didn't even need any laxatives.... wow, that's my dream. is it a significant difference between being hooked to a bag than to the pelvic floor? i mean constipation wise (of course.... what else, he he he)

how have you been doing?? you've had your share of surgeries as well just not long ago, i hope you're doing well! (((hugs))) 

i'll sure keep you posted.


Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

08/16/2009 - total colectomy w/ileorectal anastomosis

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