Takedown...now or later?

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New Member

Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 8:52 PM (GMT -6)   
I'm new to this site, so please bare with me! turn   I'm 44/F and had a total colectomy last year with a very unstable ileostomy 'tube'. I am currently doing a balancing act between TPN, a cranky ileostomy that needs to be reversed, and time.
One year ago (next week) I took ONE dose of chemo therapy for Breast Cancer. Within a week it had stopped my heart and kidneys and melted my colon (Neutropenic Colitis) I was in a coma for a couple of months and was not expected to survive. My doctors were not able to give me a 'proper ileostomy', so for a long time I only had an opening at skin level with a bag attached to my skin. I now have an 'ileostomy tube' that comes out of my abdomen and drains into a catheter bag. It is very uncomfortable and I can pretty much only eat liquid other wise it plugs the tube, when that happens the fecal matter comes out around the tube and scorches my skin. I also continue to use TPN daily, which I am very aware is not good for me...I've been on TPN for about 10 months and my liver functions are starting to creep up on my labs.
Here is the question that I am struggling with. My doctor in Seattle (whom is 150 miles away from me) continues to make me feel comfortable about having the reversal surgery done now. However, my surgeon here where I live (he didn't do my colon surgery, but he removed the cancer from my breast and has done several other procedures on me and continues to monitor my TPN since I live so far way from my surgeon in Seattle). He continues to warn me not to have this surgery too soon. He says that if I do it too soon, it could go terribly wrong...I want to hear from others who have had a total colectomy, how long they waited before they had a reversal? It will have been 6 months in a couple of weeks since my last surgery...I just want to know what other people have gone through...how long they waited, how it went, and yes, the horror stories too. I want to know it all! I completely understand that we are all different and will respond differently to medical procedures. My case is not very clear cut, and my response to chemo was like 1 in a million, from what I've heard. So...now I automatically think in terms of 'what is the worst thing that could happen'..lolI just want to know your stories, it might help me to make my decision. Any help would be much appreciated.


Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 6/23/2010 7:01 AM (GMT -6)   
wow...I thought I responded to your post already...I must be losing my mind!

Have you checked out the "Total Colectomy" threads? I think they are one #35 right now. You can do a search for the others.

Can you get a second opinion from somewhere like Mayo? Cleveland? or, is it USC Med Center in California? You might be able to send your records and see if an in person visit is warranted.

It sounds like you have been through a lot...I hope you can find an answer!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Regular Member

Date Joined Apr 2010
Total Posts : 206
   Posted 6/23/2010 9:57 AM (GMT -6)   
We've been responding to the same thing you below a few threads below??
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
Atlanta, GA

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