Subtotal Colectomy-how to get there

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KellyBelly
Regular Member


Date Joined Jun 2006
Total Posts : 319
   Posted 8/2/2006 1:25 PM (GMT -6)   
Hey everyone.
 
I just found out after some autonomic testing that the nerves in my colon are damaged and they no longer allow me to pass stool through my colon.  Because of this, I am constantly constipated.  The stool gets stuck on the right side of my colon and does not pass beyond that point.  I've done enemas, colonoscopy preps, laxatives, stool softeners, etc.  Nothing is working anymore.  My doctor told me there is nothing more we can do, so my only option is to do 2 enemas a week that don't even really work that well.
 
This makes me angry!  I know more can be done, but I don't understand why he isn't giving me a subtotal colectomy as an option?!  If my colon is pretty much paralyzed, than why can't we just get rid of it!!
 
My question is, how can you get to a Dr. that will consider the subtotal colectomy as an option for you?  Should I see my regular physician (who is very nice and would likely refer me to a surgeon) or do I HAVE to get this referral through my GI who is not very willing to help me right now?
 
Thanks for you advice,
Kelly
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 8/2/2006 2:09 PM (GMT -6)   

Go to your regular doctor and get a referral to a colo-rectal surgeon.  Your regular physican should be able to do this based on the results of your report.

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
 


MMA
Regular Member


Date Joined Jun 2005
Total Posts : 28
   Posted 8/3/2006 12:44 PM (GMT -6)   
Hello,
 
I would go right to your regular doctor, there is no reason to sit there and suffer when you could be getting help. I did not push the subject with my doctor and suffered for 7 years before they even recommended me to a GI doctor. Then after one test by the GI doctor they set me up with my surgeon. I first had the sub-total colectomy because like you but on the left side my colon just didn't function. They removed 2ft from the left side which was just dead tissue at that point. Not even one year later I started getting sick again and in pain. I went directly back to my surgeon who did another test and discovered that the rest of my colon had died between my first surgery and then. I then had to go back in for a total and it was so worth it. No more feeling sick all the time more energy. I would definuetly recomend talking to a surgeon rather than waiting any longer, it won't get better on its own believe I tried that and then I ended up with a total instead of just the sub-total. Any questions just let me know.
 
Melissa

KellyBelly
Regular Member


Date Joined Jun 2006
Total Posts : 319
   Posted 8/3/2006 1:39 PM (GMT -6)   
Thank you Melissa. This is great advice. I hope I can get this done. I am so miserable and losing weight from this constipation. Thank you so much.
 


KellyBelly
Regular Member


Date Joined Jun 2006
Total Posts : 319
   Posted 8/3/2006 1:39 PM (GMT -6)   
Thank you Melissa. This is great advice. I hope I can get this done. I am so miserable and losing weight from this constipation. Thank you so much.
 


karenwblpn
New Member


Date Joined Jun 2006
Total Posts : 2
   Posted 8/5/2006 8:46 PM (GMT -6)   
I am new to this forum. I have a disease called MEN 2B and that includes ganglioneuromatosis throughout my colon causing a megacolon with severe constipation. I have had problems with constipation my whole life but at age 39 it is really, really bad and the doctor says it is only going to be progressive. Currently I take 11 (eleven) Dulcolax every 5 days to have a bm. Most of the time I have bloating and abdominal discomfort and I am constantly dreading the next dose of Dulcolax. The pills make me nauseous and sick. It has a candy shell and just thinking about swallowing them makes me gag.

I have recently saw a colorectal surgeon but he says so many possible bad things that can happen that I just don't know what to do. I am miserable with my colon now but at least I know what to expect. I don't want to make things even worse. Is it a collective opinion that a total colectomy with anastamosis has been a positive experience or are people generally worse off. Thanks, Karen

karenwblpn
New Member


Date Joined Jun 2006
Total Posts : 2
   Posted 8/6/2006 2:58 PM (GMT -6)   
I have already seen a colorectal surgeon. He says he doesn't know if anastomosis will work because he doesn't know if my rectum will work. I could have debilitating diarrhea or I could possibly still have constipation (which I doubt). I would do it now if I knew that I wouldn't end up with an ileostomy, but I don't know that. I know other people deal with them fine but I really don't want one. I'm trying to weigh the pros and cons which is why I logged into this forum, to read about others and how the total colectomy worked for them.

wmnak
Veteran Member


Date Joined Jul 2006
Total Posts : 1123
   Posted 8/6/2006 4:09 PM (GMT -6)   

I had APR surgery in February and now have a permanent colostomy.  My cancer was on the anal verge, so the surgeon removed the perfectly good anus as well as my rectum.  There would not have been enough tissue near the anus for a reconnect.  At least you have the option.  And ... you have time to research and decide. 

I'm not familiar with your disease.  Regardless, I'd suggest you not only check out all the ostomy boards online, but that you visit as many professionals as possible and get their opinions.  I am satisfied that my general surgeon did a great job, but I didn't have a colorectal specialist available.  My oncologist from M.D.Anderson was the deciding factor for me.  An ostomy isn't the end of the world, not even the end of life as we've known it.

Good Luck  :-)   Martha


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 8/7/2006 3:37 PM (GMT -6)   
tongue  Hi! Kelly my name is Angel... First what part of the United States do you live?  I feel your pain.  I went for 12 to 15 years with chronic constipation and nothing would work.  Not something prescribed, nothing over the counter, and not even an enema.  I friend of my husband was diagnosed with Colon Cancer and spoke to his surgeon about me and said have her set up an appt and he saw me.  He asked me many, many questions known as a History.  Did he ran an Colonoscopy which was fine; they he mailed me the Sitz Markers to take and go to the local hospital on day 3 and day 5 to see if they move through my intestinal track or not.  Since all the markers remained in the same spot where they first started.  I failed that test.  Next exam was with barium, a barium enema, and a porta potty.  I failed that too.  Within two weeks, I was under the knife.  Yes!  Your doctors is correct there are a great deal of risks and will you body be able to handle the possible risks if need be.  Such as blood clots, blood transfusions, septic infections, a permanent or temporary ileostomy.  Go to you family doctor explain what you have been going through.  Let your family doctor review your medical history and describe a gastro doctor to send you to.  The Gastro Doc will do a history of you and a rectal exam and discuss his findings.  Maybe he or she might do a colonscopy first or a maybe a sitz marker test first or he/she might just prescribe the drug Mirilax (a laxative).
 
Good luck and keep trying to find someone to help you the right way!
 
Angel yeah
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