Patient Wisdom
I wish my 1st doctor had told me that, after the surgery, I would still need follow up checks; instead, [I found] out by accident six years later. I also with that I had been told that surgery does not solve the problem and that it’s a life long condition. - Claire McIntosh
[That] my loss of my ovaries would dramatically change me in unimaginable ways and that I would never be the same person again. - Georgia Hurst
Six small meals a day! After your surgeries, start eating slow! I had a blockage right out of the gate [after] the second one and it was awful! - Anonymous
This disease doesn't end with the removal of your colon. There is a chance that your body may respond to certain food differently, but it varies from person-to-person and throughout your colon-less life. See what your J-pouch can do on its own without anti-diarrheals or supplements. Butt burn is real and manageable with Calmoseptine. - Dakota
They never told me that cutting through nerves can cause irreversible pain and spams. - Teresa Weimer
That surgery may affect fertility. Discussion of storing eggs, etc. - Ruth
Staying hydrated, not over doing it. - Israel Gonzales, Jr
They recommended wet wipes, creams for bottom, sitz bath, lotions. I went in prepared due to the specialist and my dad having the surgery five years before me. At nine [years old], I was extremely prepared for surgery. I also liked the pjs from home, as it made me feel good when people visited. - Kari
They really didn't tell me much. I would say they should have explained about complications, the bathroom issues that could be an issue and, also a biggie, [that] this surgery does not cure you. It’s some you deal with for life! - Anonymous
That I would (1) wake up with a tube in my nose that went into my stomach and (2) have multiple uncontrollable bowel movements once the colon started working again. - Marcia
Do not believe them when they say “eat whatever you want”!!! Meet with a nutritionist and take it easy food-wise in the beginning. - Michelle Sutter
1. Better understanding of reported small risk ("3%") of sexual impairment associated with my proctocolectomy/IPAA. My sexual function was noticeably diminished by surgery. 2. Better dietary guidance. There was disappointingly little credible guidance about how to shape a new diet after surgery. - Frank Rider
How the bowel starts to operate after the operation can be rather uncomfortable. Maybe also … how long it takes for the body to start "getting back to normal”. - Elaine Duxbury
That did not happen. I did have to learn how to work with the ileostomy. I tried the bag before and that helped. We discovered allergic reactions to the glues. I did not realize the extent of the 11 hour surgery would have on my mental acuity. It took a good year to get back all my memory. They could not use morphine. - Sandra Redlands
That surgery may lead to the development of desmoids. - Morgan
Start out eating things slowly. You may not be able to eat the same as usual. Some people it dosen't bother, some it does.
- Sandy Miller
Bags leak. It can take several bags to find the right one, don't be hard on yourself. You probably won’t absorb oral pills or liquid any more [and] you will get dehydrated very easily. - Whitley Buckles
Question 2. Do you have any advice on adjusting to your new body?
Sense of humor is HUGE! …When I talk to other "bag people", I try and make light of all the positives I have found in my life with my bag. - Kelly Livingston
Push it - explore your limitations and learn how to adapt. Do not accept anything as final unless you decide it is. Period. - Ed Minor
Trust your body; let your body heal. Work up to solid food and raw right away, as soon as you can handle each step. Yes, eat raw fruit and veggies again. Not on day one, but within the first month. Introducing them as you would an infant. Slowly! - Kari
As a woman…be prepared for instant menopause after the surgery. - Lara Breunig
Surround yourself with positive people who are willing to help you. Listen to your body. If it wants to sleep, then sleep. Give in, don't fight it. Find doctors who don't subscribe to the "one size fits all approach" and are willing to explore other options to help you feel your best. I had to go through several doctors for hormone replacement therapy because the typical HRT meds weren't working for me. - Georgia Hurst
Watch what you eat, everyone is different. I tolerate everything very well. I go to the bathroom 3-5x a day. Don't be afraid of fiber. Probiotics helps me when my lower end is raw due to straining. - Brian Hanson
Always have extra clothes in your truck [and at] work and have extra ileostomy bag with other equipment in a backpack where ever you go. - Israel Gonzales, Jr
Don’t attempt to eat like you did before surgery the first day home. If you are full, stop. - Tami Arnold
You are unique and beautiful inside and out. Scars simply show others that you are a fighter and that you never give up. Be proud of your body and remember that what’s on the outside is only skin deep…it’s what you have inside that counts. Let your personality shine. - Claire McIntosh
It’s all to make you better eventually. It's hard work! Approach it like it's your job. - Emily Wilson
The bag was a major adjustment, but I was able to deal with it knowing, for me, it was temporary. I know things can change and I could still end up with one if things change OR get complicated, but I choose not to dwell on that aspect. - Janet Weistock
The easiest advice that I have is to accept the new normal. My saying is "it is what it is" and hit it dead on. You will accept the new norm in time. Be patient. - Alan Wolf
Stay patient - it'll take a decent amount of time until you are normal again. Ask for advice from ostomy nurses that are familiar with pouches. Don't be afraid to try things that are going to help like Metamucil or Imodium. - Anonymous
Watch your diet, listen to what your body tells you. Pay attention to foods that can cause more pain or issues. - Anonymous
Take it one day at a time and don't push yourself too hard. Listen to your body. Even to this day, if my body needs a day of bed rest I need to listen. - Michelle Sutter
Certainly openly ask questions of others, doctors and/or nurses, but especially others who have experienced similar surgery. Accept the necessary changes (frequent bathroom visits, dietary restrictions, etc.) and make the necessary adjustments to integrate these into your routine. Don't catastrophize, and be vigilant for changes or concerns. - Frank Rider
Give things time; it takes time for your body to adjust to your new "plumbing" and, unfortunately, there is no "typical" for how long recovery takes and until your new "normal" sets in. Things take time; measure progress in weeks/months, not hours or days. - Charlie Henricks
It’s ok - your body doesn't define you. It's ok to not be ok at first, to take time to get used to your new body. - Jenny Jones Bay
Take your time. It is a huge difference, even though it is unseen. My mother (who had her colon removed and 3/4 of her rectum - hello diarrhea) was told that it takes 12 months for the bowel to completely heal and I have found this to be very true. - Elaine Duxbury
My body is totally different than it was. I have totally had to change my diet. I know what affects it in a good way and what affects it in a bad way. Stick to what you know is good. And drink lots of water and fluids. It is very important when you loose part of your bowel. - Anonymous
I haven't had a colectomy, but I have had several surgeries on my face related to my condition. It takes some time getting used to the scars. But eventually you do. If you put steri-strips on your scars, it helps them heal better and not raise up. My doctor told me this. - Alyssa Zeigler
Try to be as openminded as possible and acknowledge that it's a never-ending experiment! Your new body is always in a state of flux, so keep trying things, food especially, even if they failed before! Decide what's important to you and accept that keeping them sometimes will lead to unpleasant but, temporary, consequences. - Dakota
Be patient with yourself and your body. A new normal will come. - Sandra Bunnell
It will be a new body and [you] will have to adjust. You learn new and healthy ways - you can give in or be alive - you control your emotions and whatever you want the outcome to be is what will happen. - Sandra Redlands
I had to learn ([I] am still learning) to appreciate my body for what it does well, rather than how it may look (desmoids) or how I may feel. - Morgan
Your just as good as you ever [were] and your just as good as anyone else. - Sandy Miller
Give yourself time to adjust. It has taken me over a year to partially accept my new body. I still haven't fully accepted it. - Whitley Buckles
Question 26: What do you wish doctors had told you before your surgery that you had to learn the 'hard way’?
Factoid: According to "Body Image After Stoma Surgery," having control over our bodies helps connect us to others. Any change in that control can make us feel separated from normal social norms. The author shares great tips for anyone adjusting to surgical body changes.
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