APR surgery coming scared and questions

[PaulSmarinecorps]

I had recently 9/19/19 had LAR surgery to remove tumor near sigmoid I think.... and put on temp ilio. I really had never had any major surgery before in my life and thought I was as health as an ox.. I walked right in there like let’s go, and boy was I awakened to hell!!! The whole experience the life change at 37 years old, the pain, the hospital nurses and the healing time!! I found out so much about my body after that. Like the weakness and the constant feeling of exhaustion. I had to realize I wasn’t who I thought I was... in October now the pathological report comes back with positive margins going toward the anal verge area...now after the final go around 12th full cycle of FOLFOX and half the man I thought I was and my bald arms and hair falling out in clumps now on the last round of course!! So now I’m lined up for a full APR “Barbie butt” and I’m scared as heck! I may act strong in front of my kids and family but I’m scared as all heck! So my questions from anyone who has had this or cared for someone who has and how is the recovery process? How is a colostomy compared to iliostomy if you’ve had both? The dr said 50% of the time the “crack” wound doesn’t heal and I know that means really 25% maybe heal? How is that? And the pain? I have a 2 year old I chase home alone with all day and I want to know when I’ll be able to get up comfortably again? Sorry to give a story just scared and you people help so much!

[Soccermom2boys]

Hi Paul—

I had your same surgery just over four years ago so I can share with you my experience. I went in for the surgery on a Thursday morning and I was in the hospital until the following Tuesday so a total of five nights. I was up and walking for sure by Friday (the day after)—I don’t believe I did that very first day as I was definitely on some heavy pain meds immediately following the surgery. I am by no means the most fit person, especially compared to others I have read about on here, but I did go in to the surgery the most fit for my own personal history. I had walked and run for miles practically every day that I could for the weeks leading up to the surgery and I am most certain that helped with the beating my body took. This was the first and only surgery I had ever had so I truly went in not knowing what it would be like to recover from such an operation.

So it took my body a solid eight weeks to feel relatively back to normal. I did not sit directly on my butt for more than 10-15 minutes at a time for the first two months, and probably didn’t even attempt to sit on it for the first three to four weeks as it was just too painful. I would sit on my couch kind of reclined and slumped a certain way on my side so that I did not sit directly on my butt. I knew it wasn’t going to be for forever so I just did whatever awkward sitting I had to do to give it a chance to heal. I can recall about two weeks after surgery having to go to my surgeon for a follow up appointment where he checked the healing process. Well first of all the drive down there practically brought me to tears as it was hard to sit in the car without bumping that area and then my surgeon, who I think the world of, can have an hour long wait sometimes with appointments depending on where you are in the lineup and what he needs to discuss with those ahead of you so sure enough I get there and he was a solid hour behind. I just walked the halls outside of his office because no way could I sit for that. I eventually had to ask them if I could lay down on an exam table or something until I could be seen. All of this is to say I went out of my way to do my due diligence on giving that entire rectal area the proper chance it needed to heal even when there were times it was challenging. It took a while to fully close up, but I had no issues generally speaking—I just needed the time, but it got there and honestly not one issue since. I only started to ride my bike again in the last year as I was afraid of that possibly causing an issue with long-term healing. I am not someone who rides their bike for 50 miles at a time or anything, but I enjoy a good 10 or so mile ride here and there and I have been fine with it so far—I like the big “cushiest” seat I can find for on there.

You mention you have a two year old and that will make it more challenging because they want to be held and that is where you are going to have to be very self-disciplined. Once you have this surgery you are very much at risk for developing a hernia, so you have to be extremely mindful of how much and “how” you lift things. You should not lift your little one for quite some time after this surgery if you want to give your abdominal muscles the best chance to heal as well. I know I am only four years out so it can still happen to me, but I try to be mindful about lifting things and to date (knock on wood), no hernia.

This is a very humbling experience—both dealing with all that cancer brings with it and recovering from a surgery of this proportion. Just truly take it day by day. Every single morning when I would ever so gently get out of bed and put that first foot on the floor I would assess how I felt and as long as I wasn’t worse than the day before I took that to be a step in the right direction. I am not sure of your work status, but if you can get your doctor to write your recovery time off from work, ask for the full eight weeks. Be selfish about your recovery—you only get one first shot at it and it will pay off to give it your best effort. This is for sure an example of slow and steady wins the race—do not rush the recovery, just know that at some point in the future you’ll get there.

Good luck!!

[PaulSmarinecorps]

Thanks for the reply it help so much to hear someone’s story! I have my father staying with me when I get home from the hospital while my wife is at work and my 2 teens are at school. He plans on staying as long as needed to help with the little one! I have not worked since my diagnosis day and I have all the time in the world to take off as I want before I get back to work so that’s a plus! I worked predominantly out of town every other day on call for the last 7 years and I tell you what, being home raising my own, now 2 year old every day all day is amazing! We are so bonded and she’s a daddy’s girl 100%! I don’t want to go back to work lol!!! Think I may look for a new career! This is the first I have heard of a hernia problem at all with lifting. I will have to read some!

[JJH]

... This is the first I have heard of a hernia problem at all with lifting. I will have to read some!

Here's some initial info on incisional and parastomal hernias.
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50471&p=387550#p387550

Since you will have both types of incisions (APR and colostomy) from your surgery, it is very important to avoid all kinds of pressure or torque on the abdominal muscles, otherwise you run the risk of having hernias that will need to be repaired -- and requiring even more surgeries and more hospitalizations.

I'm telling you this out of personal experience. My hernias erupted over two years after my initial surgery. These kinds of incisions need a long, long time to heal properly.