surgery for colonic inertia Feb 1....can anyone please give me advice?? PLEASE!!!!!!!!!!!

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cravelife
New Member


Date Joined Jan 2010
Total Posts : 9
   Posted 1/20/2010 9:32 AM (GMT -6)   
Hello.  i am a 24 year old female.  i  have suffered from colonic inertia my entire life as well as pelvic floor dysfunction, severly.  the constipation got really bad three years ago after a car wreck that they suspect disconnected nerves from my spinal cord.  i have been everywhere, done what feels like everything.  i even did a operation that involoved puting scopes through my entire colon and doing a two day reading..i was wide awake for this entire procedure.  that reading told them i guess that my only answer left was surgery.  this was in 2008 and i was not happy with that answer and besides i was turned down by all three surgeons they asked anyhow .  they then had me on a gallon of golytly every two days and then in august of 2008 that stopped working and since then they have not really come up with a way to clean my out.  i have been going to mayo clinc for over a year now.  at first their tests did not show that i had colonic inertia but now they are saying that i do...confusing.  i have been through a lot for my pelvic floor and so far it is rehabilitated.  i am currently doing seven treatments a day.  somedays it's hard to make it to the next hour let alone the next day.  so you'd think i'd be ready for this surgery now but i'm not and in no way do i think that this is what will really make me better.  i'm an optimistic however so i am praying and wishing for the best.  as crazy as it may sound to some i'd almost do anything though before i have to have a bag...but they say i have done everything and honeslty how much longer can i go on like this..some doctors have said not long...but i'm still here .  they are going to (i think)  remoce my colon and connect my small intestine to my rectum...however the surgeon is not hopeful and he's not sure that this won't make me worse...and my health right now is not good but i am strong and i do have God on my side.  does anyone have any advice for me...i've been reading on here for months i was so happy when i found this i have never heard of anyone with this condition before and my doctor couldn't direct me he said it's very rare.  but not i do not feel alone, however i'd never wish this upon anyone even if that did mean it was just me.  so anything anyone has to offer...any uplifting words...anything.  and if i can help anyone please just ask i feel like i do have a lot to offer....i've been through a lot with this as has everyone else.  God bless.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 1/22/2010 6:46 AM (GMT -6)   
hi cravelife,

i was sorry to read about all the difficulties you've been through for so many yrs. you're facing now a big surgery and hopefully this surgery will give you your life back. some ppl who had this surgery had the best outcome and their results couldn't be better, but everyone is different, so you must understand that after surgery things still may not be perfect, though i really wish you to be one of those that it worked the best for them.

i'm a 36 yr old female and i too suffered with CI since i was 20 yrs old. i came a long way till the drs finally realized that it's not just constipation, but much more than that.

i had a total colectomy last August. they removed my entire colon, except for 20 cm from the anus up (rectum) and attached the ileum (end of small intestine) to my rectum - no bag. my outcome is not so good, but pls know that it doesn't mean yours won't be good. we can't predict what the outcome will be for anyone, but still, even so my outcome is not as i hoped for, i still feel much much better than before the surgery.

at the first month post op i went about 20 times a day to the b/r and had great relief. unfotunately i also have pelvic floor dysfunction and that bothers me a lot. i've slowed down to 4-5 tiny bms a day. i can only eat a soft-liquid diet. if i eat bread, potatoes, rice, pasta, cornflakes etc. i get exremely constipated. i scared that i may have a slow small intestine. i need to go back to the dr and have some tests done and be reavluated. need to see why i'm still having so much trouble to go.

did you have a defecography test? it's a test in which they fill your rectum with barium and also give you barium to drink. then about 30 min later i think they tell you to sit on a toilet like sit and try to evacuate the barium. while you do that they take x rays and can see if your rectum is functioning o.k or not.

also, did you have the colonic transit time test? in this test the let you swollow a capsule with 24 tiny rings that can be shown on an x ray. then they take x rays every few days to see how far this markers gone through your system. if the markers hasn't left your system within 5 days, it is considered abnormal.

i think that in any case you will benefit from this surgery a lot. even so i still have constipation issues, i still feel SO much better than before surgery, so i really think you're doing the right thing.

you can also join us at the "total colectomy part 31" and talk to more women with the same condition as yours.

i'd be glad to help you with any other questions you may have.

i wish you the very best with your upcoming surgery, may it be most successful!!

Hodaya

06/05/2007 - STARR procedure

colonic inertia w/pelvic floor dysfunction

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


sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/23/2010 2:03 PM (GMT -6)   
I am so glad I found this forum...I am a 25 year old female w/endometriosis, spastic pelvic floor syndrome, colonic inertia along with a severly dilated ascending colon. I have been suffering severe bloating, constipation, etc. for over a year now and have recently been told that a colectomy would be the best choice for me also. I had sought a 2nd opinon after my original GI suggested that but now my new GI has told me it would be the next step. I chose an excellent hospital in SE WI for a 2nd opinion so I am confident that this is what i need to do now. It is frightening but I don't want to live on laxatives and enemas the rest of my life. I have and appointment Feb 8 to meet with the surgeon. We are around the same age and I'm sure we've suffered the ame issues with losing a social life, etc. Maybe we can get through this together. I am hopeful that once this is over I can live a "normal" life again.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 1/24/2010 5:35 PM (GMT -6)   
Sarahann, Have you had testing for the spastic pelvic floor? Because my doctor told me he will not do a total colectomy until the pelvic floor problem that I have, which is anismus, is fixed. Have you had an anal manometry. defecogram, anal ultrasound, etc. to determine what is wrong with your pelvic floor. For some crazy reason my rectum will not open up for normal defecation. This causes me major problems with time management because it takes me hours to poop! I can not poop water, diarrhea, semi-solid, or solid bm's without lots of suppositories and manual removal of stool. I also have colonic inertia and I take miralax which controls the constipation pretty well. Of course I can't take a normal dose...I take a bottle of miralax every 10 to 14 days...I am having more testing on my rectum on Tuesday and I will let you know what the test results show. You should come join us on total colectomy part 31...it is all of us ladies with colonic inertia and anismus issues. Tracy :-)

sarahann
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/27/2010 1:07 PM (GMT -6)   
Tracy, I did in fact have a manometry done at the beginning of January and the diagnosis was anismus. I, honestly, don't really think this is something I have. I assumed that with a tube/balloon up my behind that of course my muscles would spasm, lol. They have Rx'd biofeedback to re-train everything. Again, I am skeptical that this is even an issue for me. I am also on Miralax BID and stay comfortable only with daily enemas. I pray everyday for a resolution. My surgeon is booked until march or April so supposed I can try biofeedback until then. There's no use going thru surgery if my anal muscles won't cooperate. What causes this to happen anyway? Was it my fault (anismus/colonic inertia, dilated colon)? This whole ordeal is very upsetting to me as I have always been healthy and now I am facing major surgery...at least I have found a place where there are others going through similar issues. I will check out the TC 31 posts, thank you.
 

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 1/31/2010 2:23 PM (GMT -6)   
Good luck with your operation and wishing you a speedy recovery. Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp stoma Postponed till ???????
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."

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