APR healing time.

[cmewrrie]

So as you know my husbands lAR turned into an APR with removal of everything (backside sewed shut).

This was a bit of a shock as we were prepared that a reconnect might not be possible but didn't realize that meant everything would go.

Any insights on the healing time or potential problems we should look out for or tips for recovery would be greatly appreciated.

Thanks!

[Lee]

It took me about 4 weeks before I started feeling something normal again. 6 weeks out and I was feeling myself again. Make sure your DH walks a lot. That really does speed up the healing process the further out he get from surgery.

I too had everything taken out with the back side sewed up. It was my decision back, and for me the right decision. I also believe it is one of the reasons I am NED today.

The best to your husband and his recovery.

Lee

[cmewrrie]

We're you able to begin your chemo on time or was it delayed until you completely healed? We had been scheduled to start 4 weeks post op

[Lee]

I was told I would start chemo 6-8 weeks following surgery. I believe this was based on the fact I would be cut open vs laproscopic surgery. At 4 weeks, it was decided I would start chemo at 6 weeks. I actually started chemo st 7 weeks because my Onc got me on board with FOLFOX. At that time, the FDA only approved FOLFOX for stage IV folks, but we knew it would be approved for stage III folks within a few months. I took my first infusion in my hand as my port had not been implanted yet.

Don't be too surprised if they wait a week or two before starting chemo for healing purposes.

Lee

[cmewrrie]

Thanks again. It's good to be prepared with what to expect. I feel like we prepared for one procedure and completely neglected to explore the APR possibility. Case of wishful thinking I guess. But in the end I am happy to just have the greatest chance of cure

[JJ2212]

Ditto what Lee said in terms of healing times and start of chemo. I started Folfox 7 weeks post surgery.

One thing I would look out for is the healing of the perineal wound. It is normal for the wound to drain for quite awhile, but the 'drainage' should be mostly clear and odorless.

My wound had been draining (leaking a clear liquid from where my anus used to be) for about 4 weeks when I realised that the odor changed and sitting started being painful again. Everything was so new for me, I actually thought that it was a smell coming from my stoma. I saw my surgeon at a follow-up appointment and found out that the perineal wound had not closed properly. My surgeon and wound care nurse said that it was unfortunately quite frequent with this complicated surgery and there isn't anything the patient can do about it. It required packing and irrigating every day for a couple of months. Not fun, but not the end of the world either.

My oncologist chose to forgo Avastin because of the wound (avastin delays wound healing) and I started chemo a week later than planned. The wound continued leaking all through chemo and closed up once Folfox was done. Unfortunately for me, 6 months later I started Stivarga and this opened up the wound again.

Long story short, know that it is possible that this can happen to your hubby, and make sure to let your dr know there are signs of infection (change in smell or color of drainage).

Good luck with the recovery!

Janie

[cmewrrie]

First night home was not good. My husband is not in a good place even regretting surgery. Ugh. Just bumping this up for any advice for these early days to give him hope for a light at the end of the tunnel

I have no clue what's normal and what's not. Tons of painful swelling, bad abdominal pain if he sits for more than an hour or so, nausea. Sleeping only an hour at a time. I feel helpless so hoping to find anything else that might be helpful no matter how small or large.

[LB10]

I'm sorry he is having such a rough time. It is still early days for him. I was told not to sit at all for 6 weeks and I don't think I would have been able to in any case. I alternated between reclining on my side on the couch, standing at the kitchen table, to walking around. Those first days home were not pleasant. I did start to improve a little each day. I alternated between Motrin and Tylenol for pain control and I needed them consistently in the beginning. At the two week mark I started to feel worse again. It took a few days to realize I had a fever because of all the Tylenol and Motrin but I ended up back in the hospital for infection. Just something to watch for. This is a major surgery and recovery was longer than I anticipated. Patience is definitely required.
You haven't mentioned the ostomy but I wanted to tell you about the UOAA website and discussion board. It is a wealth of knowledge and support for all things ostomy. I spent a lot of time in those early days reading and learning. Has your husband been told about the irrigation option for colostomates? You can read up on it on the website. It has made my ostomy a virtual non issue. Knowing it was an option in the beginning helped me to cope in those early days.
I wish you and your husband all the best and hope he starts feeling better soon. I've been there and know it is not an easy place but it does get better.

[cmewrrie]

Thanks so much for your reply. It can feel overwhelming and lonely since despite the best of intentions those around us really don't completely understand. So having connections here is so helpful even from an emotional standpoint.

Fortunately I researched a lot about ostomy care including irrigation and we have a wonderful ostomy nurse who is on board with teaching us that down the line. So surprisingly so far the adjustment to the ostomy hasn't been too bad. I think the shock and physical trauma of the complete removal of everything and bring sewed up was not something we had prepared for. Partly because of the last minute surgeon change and a communication break down in that surgery day transition.

I will advise him to try to lay on his side and avoid sitting.

His lower back had started to hurt , I am guessing from compensation for the weak abdomen muscles at the moment. I am wondering if this is common and if maybe a support belt may be needed?

Thanks again for the advice and encouragement.

[Lee]

I had a hard time sitting when I was about 10 days out. Lasted a few month. Had to buy a foam donut to sir on. Could not sit for longer than 15 mins at a time. It does get better.

I don't remember a lot of swelling. If that continues, I would call the Dr. Motrin was my drug of choice. For me, it works better than prescr pain med.

Make sure your husband is walking A LOT. Outside, around the block, etc. This really does help in the healing process.

Hope he's doing better soon.

Lee

[JudeD59]

Sent you a pm.

[cmewrrie]

Thanks for all the advice. Adding Motrin and laying/sitting on his side had made a huge difference. Sometimes these seemingly small things have enormous impacts

[Sams wife]

Thanks for all the advice. Adding Motrin and laying/sitting on his side had made a huge difference. Sometimes these seemingly small things have enormous impacts

My husband didn't want to lay down either. He finally did. He has been on gabapintin the whole time. It's the only thing that stopped the pain from the beginning. I guess nerve was getting pressed on. Don't use the doughnut. It will spread apart. Our ostomy nurse gave us an "air pillow"?
I did ask dr if he still needed gabapintin & he said probably. He took out nerves & all in there. Hope peeing is better. Hubby's is still slow. I didn't really want to reply with bad news since u asked for good. Butt. It is getting better. Doc also said infection should show up in first wk or 2 so if it gets worse. Tell them. Home health nurse said ice. Hopefully just swelling & y'all got it.

[Sams wife]

We did buy a foam bed topper from Walmart. In the beginning before chemo even & cut it to make a pillow to sit on. He still uses that some but it did hurt around surgery. A foam donut sounds way nicer than plastic one I had. Hopefully you can find something.

[Mastan]

It has been 4 1/2 yrs since my APR surgery. As a point of reference to healing I had surgery on Nov. 1 and was able to go to a park and walk for quite sometime to view X-mas lights. By May of the following year I had ridden on a 50 mi. bike tour over 2 10,000 foot mountain passes in Colorado. In the beginning it was rather miserable but that will pass. I can recommend Trazadone as a sleep aid. it works well and you wake up quite alert. As for a pad to sit on I bought one at Wallgreens that is meant for wheel chairs. It is firm with a small cut out for the spine. Initially I used it when I first went back to work. It is not a donut. Donuts are the last thing you need when sitting with an APR.

Best of healing to your husband,

Mark