Patient Wisdom
I was able to have one-step proctocolectomy/J-Pouch surgery (open). When possible, one-step obviously minimizes surgical risks and recovery needs. We preferred open surgery to laparoscopic for best view of internal process and to minimize chances of secondary damage to sexual function. (Unfortunately I HAVE experienced noticeable sexual impairment). - Anonymous
I didn't have a lot of polyps at diagnosis (about 30) and they were smaller. My doctor had read about Sulindac and thought that, if it worked, I would be able to put off surgery until after high school. We determined that waiting a year to do surgery wouldn't be risky to my health. - Alyssa Zeigler
I had a total proctocolectomy with an ileoanal j-pouch to greatly reduce my risk of colorectal cancer. - Tiffany Probus
I chose laparoscopic surgery mainly for superficial reasons but, also, to minimize the risk of desmoids. My doctor assured me that a two step surgery led to less complications and, as much as I wanted to bypass the ostomy, the research seemed to support his claim. I already had rectal polyps, hence the proctocolectomy which I think all F.A.P.ers need. - Dakota
Lynch diagnosis was impetus for prophylactic hyst/ooph. - Georgia Hurst
I had the IRA because of my prognosis. I had no polyps in my rectum. I also wanted the best functioning of the remaining options (Pouch). - Brian Hanson
My doctors told me I needed to have it all removed, so I didn’t have much of a say in that regard. Because I am so young, the doctors were fairly confident that the J-pouch would work. But they also warned me that I may have a bag depending on what happened when they got in there. - Anonymous
After a botched lesser known procedure, to avoid the dreaded bag, I ended up incontinent, in diapers, and still having more polyps burned off every month or two. The bag was all I had left. So it was the ostomy, or give up, and giving up isn't in my repertoire. - Kelly Livingston
I am deciding between keeping my rectum or not. I have not had surgery yet. My doctors have advised me to get my rectum removed, but I don't know if I am comfortable with that at such as young age. - Allison Brewer
J-pouch; failed during surgery and changed to ileostomy. Three years later, the ileostomy converted to J-pouch, with back-up option of BCIR-type pouch (if J-pouch failed again). Presently, I have a J-pouch, but will likely end up with an ileostomy again within the next 10-20 years. - Anonymous
I went with what felt right for me and what I was most comfortable with. - Claire McIntosh
I talked to several different physicians about how much colon to remove. They consulted all of the research done on the subject and I had the whole thing out. - Emily Wilson
When I was diagnosed in 1984, there were two hospitals that offered the IPAA procedure. I did not want a permanent ileostomy and, given the distribution of my polyps, I decided on the IPAA procedure fit my needs. - Ed Minor
Talking to others as well as two surgical consults. - Tiffany Costello
A lot of research, talking to survivors, and prayer. - Brenda Harbin
When I had the Whipple, I either had the choice to have it or go have a test every 6 months to make sure that the polyps hadn't tuned to cancer. So I just decided to have surgery to take the polyps that were precancerous out and I didn't feel like it was my death sentence. I think my attitude helped a lot and I had a lot of family support… - Melanie Hirschi
Was recommended by the surgeon. And my biggest fear was having a bag. With the absence of lower polyps at that time, he felt I was a good candidate for the IRA. - Michelle Sutter
Once I got the genetic diagnosis and talked with my family physician, GI, and OBGYN, I went with their recommendations. - Lara Breunig
I was told what was wrong after several batteries of tests, mainly because the tumor in the pancreas was the leading factor. I trusted the surgeon and we had a full agreement on what, how, why, etc…. - Sandra Redlands
My bother told me what surgery was the Rolls Royce. He was referring to the removal of the larger bowel, leaving the rectum then having a J-pouch internally. - Anonymous
My dads family had colon cancer so [we] start[ed] in the colon. - Sandy Miller
I spoke to the best colon and rectal surgeons. [I] also saw another doctor that was recommended and got with one of my aunts who is a charge oncology nurse. - Whitley Buckles
I've consulted 2 surgeons. One suggested IRA (ileorectal anastomosis), the other one IPAA (Ileal pouch-anal anastomosis). My doctor, [an] FAP expert, told me to go for IRA. - Maria teresa Castellini
Question 2. Do you have any advice on preparing mentally, emotionally, or physically for surgery?
Get in the best shape you can. Work out and train for it. For me years ago, I was split from sternum to pubic bone. I lost weight and got to the point of doing 250 sit-ups and 50 push-ups per day. All the work ahead of time (~6 months) helped make my recovery faster than average. - Ed Minor
Let family members know when surgery is scheduled, that way everyone can get a break and rest. Get a second opinion; it reassures you are doing the right thing. Be willing to fight everyday; it will be hard just after surgery but, in time, drink fluids and stay hydrated. - Israel Gonzales, Jr
Having a strong support system, and understanding that you are doing this to improve your length of living, and the quality of that life. Expect some bumps, have the pity parties, mourn the impending loss, then pull yourself up, and get back to living. - Kelly Livingston
Get yourself a therapist who specializes in genetic disorders who can validate your concerns and support your medical decisions. Surround yourself with positivity - reach within yourself for strength because no one will be able to provide it for you. Be as healthy and strong as possible prior to your surgery; you will recover much faster. - Georgia Hurst
Have a great supportive family and friends before surgery. You'll need all the support you can get with J-pouch and Whipple surgeries. - Teresa Weimer
Pray before. [Complain] after. - Samuel Duckworth Physically, I try to keep fit and healthy. - Anonymous
Do something enjoyable before surgery. Have something to look forward to after surgery. - Tami Arnold
It’s just as hard if not harder emotionally than physically. Don't underestimate the effects of the emotional. They can hit hard! Don't be afraid of anti-anxiety or anti-depression medications. Surgery can be physically grueling as well. Just have good support with you. - Emily Wilson
Stay positive - it's not going to be easy. When there's pain just remember it's temporary and try to concentrate on other things. Persevere! - Anonymous
I think a lot has to do with attitude and knowing that it will be better for you in the long run. People thought I was crazy when I did it ,and now people are amazed when they hear I had the Whipple and I am healthy to this day… - Melanie Hirschi
Do what you can to de-stress. Get massages, be with friends, talk about and let your emotions out. - Lara Breunig
Once I understood what needed to happen, I (1) scheduled the date, (2) started taking a daily multi-vitamin, (3) put my pre-op appointment on the calendar, and made requisite arrangements with my employer for the time off for surgery and recovery, and then (4) determined to enjoy every day before surgery to the fullest, because "you never know…" - Anonymous
Get your house in order, do whatever you have to to be prepared for a tough experience. Talk to friends, family and others who can encourage you and help you go in with a great state of mind. - Charlie Henricks
Hope for the best but be mindful of risks and worst case scenarios. Talk with others who have gone through it before. - Jenny Jones Bay
Mentally, you need to remember why you are having the surgery. Emotionally, try some meditation. Physically, keep as fit as possible - helps recovery. - Elaine Duxbury
Don’t get yourself worried about what will go wrong. Keep a positive attitude. When you do go for the surgery make sure to bring along a few comfort items They really help! - Anonymous
I try not to think about it a lot. If I'm nervous I might talk to a friend about it because it's not healthy to keep emotions bottled up. - Alyssa Zeigler
Know that you will need time to recover and that is not something that can be rushed through. - Tiffany Probus
Enjoy your colon to the fullest beforehand, take it out for a last superb food date! It's nice to have a sounding board so try talking to your friends openly and don't stress about crying in front of them...it happens. Know that it's going to get worse before it gets better. Recovery is full of surprises, some unpleasant but some supremely great! - Dakota
Meditate, run, eat well, and become as strong as possible before the surgery; you'll recover faster. - Georgia Hurst
I had all my legal stuff done and I went into surgery at peace with the world, so to speak. I talked frankly with my family and I knew the outcome was iffy in my case, but I had a purpose and I will continue to support life and research as long as I can.
- Sandra Redlands
I went to counseling and discussed my fears. (Being angry under [the] influence of painkillers and treating loved ones badly). I also prayed, and had family pray with me. - Anonymous
Just know if you have surgery you will live longer. - Sandy Miller
Question 25: How did you decide on which treatment or surgery to have?
Factoid: The United Ostomy Associations of America, Inc, provides educational resources on the different colostomy surgical options.
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