Patient Wisdom

Patient Wisdom

Question 24: Do you have any advice regarding a particular surgery or treatment? 


Factoid: When you are deciding on a particular surgery, you may have all the time in the world to ask questions, but what questions do you ask? Johns Hopkins Medicine offers sound advice on the matter.

I had a total colectomy with a J-pouch in one surgery. Though it was not an easy surgery or recovery, having it done in one step was great. The surgery was also done laparoscopically which helped with the recovery and minimized scarring. - Anonymous


If your only option is an ostomy, it's truly not the be all end all. Don't be quick to try some lesser known procedure. I did that and it didn't buy me any more/better quality of life time. - Kelly Livingston


Read all you can about the surgery and the aftermath. Talk to people who've gone through it themselves. Find out everything that could go wrong as a result of the surgery. Removing body parts holds tremendous implications for other body parts. You may be preventing cancer but subjecting yourself to a litany of other issues. - Georgia Hurst


Check your doctor out. Ask lots of questions. No question is dumb. See if they will set you up with a previous patient that has had the same surgery. See if the person is similar to you. - Teresa Weimer

Moviprep is the best in my opinion pre-colonoscopy. - Brooke Porretti


Ask your surgeon how many times a year he performs the surgery and how long he/she has been providing services. - Anonymous


If you are stuck between two different surgeries (e.g., J-pouch or Koch pouch), you'd be surprised that some surgeons will consider collaborating for rare/unusual cases. My father was able to convince two specialty surgeons to work together. - Anonymous


Get as much information as possible and start with the least invasive first. Make informed decisions and get advice from your doctor. Don’t be frightened to ask for a second opinion. - Claire McIntosh


I had a total colectomy with a j-pouch created but, while that was healing, I did have an ostomy bag for 5 months while I was healing from the procedure. Then the bag was reversed. - Janet Weistock


Pick the surgery you want. Talk to people who had that surgery. See what surgeon has the most success with that specific surgery. - Kari


Deciding to have the hysterectomy was actually pretty easy because I knew that would drop my chances of cancer in "those parts" to nearly nothing. I'm not saying I took it lightly, and if I were wanting to have would have been painful. - Lara Breunig


There are pro's and cons to various options, and my best advice is to research thoroughly, ask every question of professionals you can, and turn to the (on-line) FAP support community to vet and enhance your level of information. Be a critical thinker: do not blindly accept anything you hear or read, but rigorously challenge it as you learn. - Anonymous


I had a TAH and subtotal colectomy and have no regrets on either. - Lara Breunig


If you have lots and lots of polyps, then I would definitely say J-pouch. You don't want to get cancer. - Elaine Duxbury


Any time you have your colon taken out, it is good to get a temporary ostomy. It promotes better healing and give the bowel that was operated on time to heal. - Anonymous

If you’re overweight, you can’t have colon removed laproscopically which will cause more pain and longer recovery time. - Tiffany Probus


Unfortunately, losing your colon is not optional. Do your research, keeping in mind that it's a major procedure and there are lots of negative stories but, colonless life really from person to person and everything won't happen to you! Consider the physical as well as the mental risks of a one vs two or three step surgery. Shop for a surgeon! - Dakota


Less invasive is always better, but when opened up use the body wrap, a must to prevent adhesions.  Do not panic over an ileostomy, get advice ahead [of time]. Know what to expect and ask for people to talk to. - Sandra Redlands


If you have a total colectomy, have an ostomy nurse work with you to get the best appliance for you. If you are in pain make sure doctors help you out. - Whitley Buckles

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