total colectomy

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MissMousie
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 3:55 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 6/21/2010 6:57 PM (GMT -6)   
MissMousie~welcome to the forum! Sorry you've had to go through so much...

There is someone who post on the "Total Colectomy" threads...lasbutterfly, I think...who has also had the tube to large bag on her leg. You may want to start with those threads.

Is there a way you can get a second opinion from a larger, even teaching, hospital? It might be worth the travel and expense to have another opinion.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


MissMousie
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 7:38 PM (GMT -6)   
My surgeon in Seattle is at the University of WA teaching hospital, Harborview Medical Center. So I work with a team of 4 surgeons and all their little interns that follow them around. So I've had lots of opinions coming from the teaching hospital and they all say to just go, it's just my doctor here where I live, whom I have alot of respect for, that is telling me to wait. Thanks, I'll go and follow that thread.

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/21/2010 8:06 PM (GMT -6)   
While definitely never going through what you have - how "well" do you feel like you function? If you don't have enough energy to do normal day-to-day tasks than I might want to hold off. I'd do a physical beforehand. Have various things tested, get your blood work done, etc.

Sounds like you've had a lot of unfortunate things happen. Glad you're still with us!

Your doctor is probably doing a good thing (although I can understand how much it annoys you) by telling you not to have it too soon. If you can lay out a few reasons and prove you are well enough to go through with the procedure than I think they will see you can go through with it.

Best of luck.
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


MissMousie
New Member


Date Joined Jun 2010
Total Posts : 9
   Posted 6/21/2010 8:31 PM (GMT -6)   
I function pretty well now. I was in the hospital for 7 months and when I got to the rehab center where I spent two months, I couldn't even walk. They got me up and running in no time. I've continued to get better and I have the energy to carry on day to day life. I have alot of pain and that keeps me from doing alot of things, but it's not because I can't, it's because I hurt too much. I don't have to prove anything to my surgeon in Seattle, he wants to do it now. My problem is that I have this other doctor who sees me all the time telling me that I should wait...he wants me to wait for the year marker which would be next January and I'm definitley not doing that. I'm thinking about Sept.. I want to do it now...I'm just afraid of what this other doctor has been telling me...
 


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/22/2010 7:14 AM (GMT -6)   
You could get another opinion or two. You don't want to risk your life for being impatient. I know you don't want to hear that. I've been asking for them to rip my colon out of there and until they're ready they aren't going to do it. Frustrating on my part, but at least they're concerned.
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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