Total Colectomy Complications

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canadian
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/3/2007 9:21 AM (GMT -7)   
Hey everyone-  I was wondering if anyone had ever heard of leaving a portion of the diseased rectum after a colectomy in hopes that it would be controlled by proctofoam enemas.
Let me give you a little history I was diagnosed with UC in 2001 I exhausted all medication options and near the end was falling apart on 60mg predinisone.  I went in for a total colectomy 12/05 and had take down 02/06.  I never got better never felt better in fact I became worse then I ever was.  With a second opinion it turned out the surgeon had left 5cm of diseased rectum.  Is this really strange to anyone else? I lost a whole year of my life I am a mother of 2 very young children and it was near impossible for me to do or be anything for them.  I most recently had to go out to the Mayo Clinic for a major revision to remove the diseased rectum.  I am now waiting for my take down in two weeks.  I am very nervous about the outcome since I've already done this a year ago.  Does anyone have any insights into my situation? I guess I'm just really confused about the first surgeons decision regarding the untouched diseased rectum he left inside.   

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/4/2007 2:54 PM (GMT -7)   
This is not the first time I have heard of surgeon's not doing a total proctocolectomy for UC patients. I am unsure if it is due to their skill level or training. Apartial colectomy is never successful long term as you know the UC will just come back and invade the remaining tissue. I encourage you to visit www.j-pouch.org You might find others like you on that board.

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
 


canadian
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/4/2007 4:51 PM (GMT -7)   
Sue-
Thank you for the info. I looked on that website and I think you are right about the experience and training of the surgeon. My disease too started as a proctitis that was the biggest confusion for us as to why he had left it intacked and still diseased when we'd exhausted all our med options obvious to us meds wouldn't work for the same disease left inside. It may seem strange but we are pursuing it legally as medical malpractice. I am only 5'1 I got down to double digets in weight most of the people I know didn't think I would make it I was severly dehydrated, up to 20-30 stools a day, loss of control, gaunt looking and no longer had the will to live because quality of life had disappeared. All my doctors disserted me and kept telling me I was fine until I started going for second opinions. The second opinions told me I had unusual surgical anantomy, that it didn't look right and that a revision was so complex that I'd have to go out of state to a highly specialized surgeon to correct it.

I also have some more questions: Do you still have mucous and blood come out of the rectum with an ileostomy? Is there major control issues with take down? I am so nervous to try this again since I've already done this once.

-------------------------------------
2001 diagnosed with proctitis
colazol, asacol, prednisone 5-60mg, imuran, 6mp, rowasa enemas, hydrocotisone enemas, diet etc.
2003 left sided colitis
2005 wide spread colitis
12/2005 8 1/2 hr total colectomy with ileostomy, revison, stenosis and hydronephritis from stent placement
02/2006 take down
imodium, fiber pills, proctofoam enemas, antibiotics
01/2007 major colectomy revision
pending take down 02/2007

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/4/2007 6:22 PM (GMT -7)   

I assume you have (or will have) another temporary ileostomy?  In that case, yes, I imagine you would still have mucous and blood coming out of your pouch.  That's a good sign, it means the tissue is healthy so don't fear it.  If you had a permanent end ileostomy (meaning you are having your j-pouch removed) the anal area would be sewn shut and you would have no mucous or blood passing thru.  The adaption to the j-pouch can be frustrating so be patient with the process.  Most likely you will experience some urgency and discomfort in the first few weeks.  Frequency will be higher too.  Expect to see improvement in six week increments.  Recovery is two steps forward and one step backwards for about the first year.  It's not all bad, you will be healthy and will have the opportunity to put weight on and get your stamina back.  But the new plumbing has to learn how to behave like a colon and that takes time.  Please check into www.j-pouch.org if you get frustrated or down.  There are a lot of people on that board who can provide you with support and share their experiences.  That board got me through my first year and I learned that I was sharing some of the same recovery issues as others, it made me feel okay.  My surgery was six years ago and I am fat and healthy six years later!  You will be healthy again soon too.

It sounds like you have been through the ringer but should be in very good hands at the Mayo.  Continue to get well, I will send good thoughts your way.

 

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
 


canadian
New Member


Date Joined Apr 2007
Total Posts : 4
   Posted 4/5/2007 8:46 AM (GMT -7)   
Sue-
Thank you so much for your knowledge and support. I have a temporary ileostomy right now and I'm going in for biotherapy for three days and then having a take down. Have you heard of therapy other then Kegal exercises to retrain the pelvic floor?
I am so glad I found this website and that you responded. I look forward to a postive outcome and good health!!

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/5/2007 10:31 AM (GMT -7)   

Yes, I had rectal physical therapy after my takedown!  My sphincters were traumatized from the surgery so my surgeon sent me to his rectal PT.  She was a godsend and the exercises she prescribed cured the bit of incontinence I had in the few first months post surgery.   Again, it sounds like you are getting excellent care.

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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