about to have full colectomey and I am scared can anyone help or offer advice?

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froggie2153
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/3/2009 10:47 PM (GMT -6)   
I am a 28 year old female who has chronic IBS and colonic inertia with colonic slow transit. I have had the sitz marker test 4 times, the wall test and the other entire fun test. I have had chronic constipation since I was little and I know this surgery is to help me and better my quality of life. I get toxic all the time and run fever and sleep for days because of it. I swell to the point I look 9 month pregnant. I also have what they call NASH which is a liver disease. The doctors don’t understand why I have it since most people who get it are over weight or drink all the time. If anyone has advice please help me!
 Kathy


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 5/4/2009 12:33 AM (GMT -6)   
Kathy-Is there anything in particular you're concerned about???

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/5/2009 1:28 AM (GMT -6)   

hi froggie,

i'm so sorry to hear about your problem, but i sure think the surgery can give you a much better quality of life.

i also have colonic inertia. i haven't had surgery yet, but hoping to have it soon.

you can learn A LOT about the surgery and the outcome if you google "total colectomy part 3" (parts 1 and 2 are hard to find). you'll find a wealth of information there that can help you a lot.

best of luck to you!!


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


froggie2153
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/6/2009 3:42 AM (GMT -6)   
Thank you
I will check in to that! Good luck to you as well. Please let me know your outcome. I am also looking to make friends with people who face the same issue as I have.
 Kathy


ElliUK
Regular Member


Date Joined Mar 2009
Total Posts : 74
   Posted 5/6/2009 4:02 AM (GMT -6)   

Hi,

I am a 28 year old guy and had my colon removed just under 2 months ago.  I had UC so cant comment too much on your issues however I can comment on the surgery.

Knowing what I was going to have done to me took a lot of the stress about being in hospital away.  Someone once said to me living with the stress of never knowing when I was going to have another flare up and always being ill, tired, and on lots of meds; versus just handling life with a stoma and bag is something now I am on the other side i completely agree with.  My brain is starting to understand i dont need to worry about being ill anymore.

Think for a few mintues which you would rather cope with.  Its different for everyone and I completely understand how big this decision is to make.  I am looking forward to this summer when i can cut my lawn, and bend and twist without worrying about making myself bleed.  I even had my first beer in years last night with my dinner!! 

The surgery itself is not too bad at all, and the pain is managed after very well. 

The bags are very slim and I am wearing slim fitting sports clothes and my normal jeans/T-shirts and you cant see a thing.  HONEST!
 
A phrase you will probably hear a lot is "everyone is different", and its true - but for me I am starting to appreciate my new life now.
 
All the best,
Elli.
Elli 28
UC since 17
Azathioprine, prednisolone, Asacol,
blood transfusions, iron infusions
No Joy!
 
Colon Removed 18 March 1:30pm!
Ileostomy
Option for Jpouch but have not made my mind up yet!


froggie2153
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/6/2009 4:10 AM (GMT -6)   
 yes vette guy,

I have had 12 surgeries for endometriosis, 6 for cyst. I have also had a hernia and abdominal wall mass removal. The hernia they could not use the mesh to fix it since they took suck a large part of my stomach by my belly button. 5 DNC, 2 abdominal ablations and 2 uterus ablations. Cervical cancer that was spreading and a full hysterectomy at age 24. I have had 2 major reconstruction surgeries on my sinuses, and I also suffer from chronic migraines. I have had my gallbladder removed. The doctors believe I will need a liver transplant if we can’t get the NASH to stop spreading on my liver as well. My liver bio last year showed cirrhosis if forming on my liver due to the NASH = Nonalcoholic Steatohepatitis. I did not get it from drinking or hepatitis. I have fought so much in my life but it’s getting scared when things start to affect my liver and colon. They think some of the endometriosis is attached to other organs as well. So yes this whole thing scares me. I just look for advice and input on people who are facing what I am or have faced it. I have two kids and a husband to care for. I just want to live a normal life and be a mom and wife. My health is always getting in the way it seems.


 Kathy


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/7/2009 5:21 PM (GMT -6)   
Kathy,
if you want to meet more ppl with the condition of CI, you can also check into the "TOTAL COLECTOMY PART 22" thread. it's the CI thread.

do you have a date for the surgery yet?

hope you're feeling good.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/8/2009 7:36 AM (GMT -6)   

Oh Kathy you have been though so much so young.

Having my bowel removed was the best thing i did and it took a year to make my mind up - a year too long i feel now.


Karen 47 yrs
1997: Diagnosed IBS
2003: Pelvic floor repair surgery (rectocele/cystocele)
2006: STARR surgery for mucosal prolapse/Obstruction
2006: Diagnosed with slow transit constipation
2007: Sigmoid resection because of partial volvulus resulting in immediate colonic inertia
 
15 JANUARY 2009: scheduled for T/C
12 FEBRUARY 2009 - Re-scheduled T/C- (postponed as the Professor is away)
10 MARCH 2009 - T/C HORRAY FOR A CANCELLATION!
Loop Ileostomy - Due for reversal around June 2009
 


froggie2153
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/11/2009 12:19 PM (GMT -6)   
yes we do have the date set for May 27, 2009.

Kathy
I am a 28 year old female.

I have had 12 surgeries for endometriosis, 6 for cyst. I have also had a hernia and abdominal wall mass removal. The hernia they could not use the mesh to fix it since they took suck a large part of my stomach by my belly button. 5 DNC, 2 abdominal ablations and 2 uterus ablations. Cervical cancer that was spreading and a full hysterectomy at age 24. I have had 2 major reconstruction surgeries on my sinuses, and I also suffer from chronic migraines. I have had my gallbladder removed. The doctors believe I will need a liver transplant if we can’t get the NASH to stop spreading on my liver as well. My liver bio last year showed cirrhosis if forming on my liver due to the NASH = Nonalcoholic Steatohepatitis. I did not get it from drinking or hepatitis. I have fought so much in my life but it’s getting scared when things start to affect my liver and colon. They think some of the endometriosis is attached to other organs as well. So yes this whole thing scares me. I just look for advice and input on people who are facing what I am or have faced it. I have two kids and a husband to care for. I just want to live a normal life and be a mom and wife. My health is always getting in the way it seems. I think this is a full hystory on me. I have too much to keep up with.

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