2-fold GI said I will either need take-down OR rectum removed, & Fibercon and ostomies?

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 11/15/2009 11:16 PM (GMT -6)   
2 questions.

First, I met with a new GI (My old one moved, but I'm happy with this new one..he specializes in people like me). That said, he asked why my surgeon left the rectal stump in. There is only a couple small inches because much of it was diseased. My surgeon left it there because of my age (27) and the "chance" that we might be able to reconnect. Now that I have a properly functioning ostomy, I'm not sure how much I care to have my rectum back. I don't EVER have to worry about going to the bathroom! That is HUGE in my part..and if I'm going to be out for an entire day the next day, I can irrigate. Truly is awesome! I hate how "unsanitary" it feels, but I wash my hands and any surface I use thoroughly.. so I think that's ok. Anyway, he said if I don't have a take-down surgery, they will HAVE to remove the rectum completely because of the risk of cancer associated with it... anyone else have more info? I guess I"m okay with it..was just a bit stunned with the idea of yet another major surgery. He doesn't mean right now, but I'm sure within the next 5 or so years I will have to make that decision. Thoughts?

Second, he wants me on fibercon. The surgeon said metamucial, but the GI is at Barnes Jewish/Wash U and is CONSTANTLY involved in studies. In fact, he's the one that figured out where the pain was coming from (I have had trouble and have been in and out of the hospital for doubled over pain)... it's simply colon spasms from my Crohn's. He solved that with a 2x/day anti-spasmatic. Anyhow, I'm fine with the Fibercon, though it's technically a fiber laxative. My question is..is anyone else on it? And, if you are.. do you notice you have more output? I'm noticing my bag is filling quite a bit. It's toothpaste consistency, so it's fine.. but just still wondering!

Thanks!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Colozal. Failed Entocort. Failed Rowasa. Failed Steriods. Failed Steroid Enemas. Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira(severe reaction).
May 7th - Partial Colectomy - Sigmoid Rectal Ostomy - Partial Rectum left for possible re-connect later. Trying to get used to this new life with a bag.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 21 months old


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/17/2009 5:20 PM (GMT -6)   
Kaycie~I don't know too much about the Fibercon...my docs use Metamucil. It may just be a personal preference? I don't even use the metamucil anymore since I am able to keep my output thick enough with the foods I eat.

As far as the rectal stump, I'd personally have it removed, If I wasn't going to be reconnected. BUT if it isn't bothering you and you don't think you want it connected, do it on your own schedule. Are you having any discharge (mucous)from it? I didn't have my colon/rectum for 10 years and really wished I'd done it sooner, but I had a temp ileo then.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 11/23/2009 10:31 PM (GMT -6)   
hello
i also have my rectal stump (stumpy).
I pass about a tablespoon of mucus about every 4 days. No big deal.
My surgeons also told me what yours told you, to reconnect, or have it removed b/c it can still have dz and get cancer.
I asked how long i have to make that decision, they said it was no hurry (since i would like to have more children b4).
I wasn't sure how i felt at first, because i was just sooo happy to feel good again.
but now I know i want to have a j-pouch, so i'm glad they gave me that option.

I don't know when you had the surgery, but i'd give yourself plenty of time. Maybe even take every bit of that 5 years ;)
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 11/25/2009 10:37 AM (GMT -6)   
Depending on how bad your colitis was before, I'd get it removed sooner than later. One month after my colectomy, my colitis came back severly in my rectal stump. I have been in constant pain since. Its going to be removed a week from tomorrow when they create my j-pouch. I cant wait for it to be gone. As it is now, I cant sit flat on my behind. Its amazing how painful such a small section of tissue can cause.

I also have to go to the bathroom to relieve my discharge about 10 times a day at the moment.
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