Some post APR questions..

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MegTayMcc
Posts: 5
Joined: Wed Dec 28, 2016 10:27 pm

Some post APR questions..

Postby MegTayMcc » Thu Mar 16, 2017 12:59 pm

Hi guys!
I'm wondering if anyone out there can help me with some questions, or provide some details of their own regarding some post op issues that won't seem to go away. I'm sorry, there may be some yucky details ahead.

I had APR surgery on 1/25, incisions were laparoscopic, everything went as planned and colostomy was created. I was in hospital for 8 days, wound vac and catheter for 6 of those. Drainage in hospital was very minimal. After 2 weeks discharge started and I've been on antibiotics off and on for 5 weeks since. Things just last week seemed to be clearing, very little discharge and pain was much more tolerable. I then started Folfox after being delayed 4 weeks, and my antibiotic cycle ended this past Sunday. Things seem to be coming back again?? Drainage has increased, and color is returning. The wound is deep, approx 3inches where it hasn't closed. Has anyone else experienced these kinds of setbacks with their perineal wound? I really look forward to sitting comfortable someday.

Next question, same area. I've had some discomfort urinating since the middle of my radiation treatments. Mainly a little burning, frequency, just not the norm. I was hoping things would clear eventually. Since surgery, things have gotten worse. Strong burning, the feeling of not being able to empty, frequency, but the most concerning lately is pressure, it feels as though I'm only able to pass 1/4 of what would be my normal flow. I have a pain similar to a small piece of glass or sharp object stuck in there. I do believe there was a little blood present as well.

I'm sorry for all the gory details... this has been quite a ride so far. I just want to look forward to the day where I can enjoy my kids, husband, family, and feel a little better again.
31/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17-Present

KElizabeth
Posts: 313
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Some post APR questions..

Postby KElizabeth » Fri Mar 17, 2017 11:36 pm

I don't have any insights to help you unfortunately, but I hope this comment will bump you up in the active topics.
Feel better soon!
Female age 37 - two kids, age eleven and fifteen.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MS ?
FOLFURI plus Avastin - Sept, 2015 - current.
Art therapy January 2015 to current. :D
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA recently: 10.2 December, 2016

JJ2212
Posts: 262
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Some post APR questions..

Postby JJ2212 » Sat Mar 18, 2017 12:54 pm

Sorry I missed your post on Thursday and thanks to KElizabeth for bumping it.

I experienced everything you're describing post-APR 3.5 years ago. I run the risk of discouraging you, but setbacks with perineal wounds are quite common based on the feedback I got from my surgeon and definitely from personal experience. My wound started draining more a few weeks post surgery and didn't improve much through my 6 months of adjuvant chemo, although the pain lessened to discomfort over time. A few months after I stopped chemo, the wound eventually closed up and stopped draining, only to start again when I started on Stivarga. I had varying degrees of discomfort for the full 2 years on Stivarga, but usually managed well enough just by "side-sitting", i.e. sitting on one butt cheek instead of squarely on 2, if you get my meaning. I spent more than a year irrigating the wound a few times a weeks, as recommended by my surgeon. I eventually stopped because I didn't see any difference in the color or quantity of drainage, as long as I kept the area clean by taking a bath or shower.

As for your difficulty urinating, you should check-in with your dr as you may have a UTI. Other than the burning sensation and the blood, I had the same difficulties as you described. I was referred to a urologist to run a few test and determine if I was emptying my bladder completely, which I was even though it didn't feel like it. The urologist confirmed that nerve damage from the surgery was causing these side effects. She recommended bio-feedback physical therapy, but I honestly haven't bothered. She didn't sound very hopeful that it would help, and I've gotten used to my new normal.

You may end up having a completely different experience from mine, but know that you are not alone in dealing with this. Chemo definitely slows down wound healing, but things should get better once you stop. In the meantime, find a comfy sitting position that takes pressure off your wound. Let me know if you have questions for someone who has been there, done that.

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

MegTayMcc
Posts: 5
Joined: Wed Dec 28, 2016 10:27 pm

Re: Some post APR questions..

Postby MegTayMcc » Sun Mar 19, 2017 8:40 am

Thank you both for replying!

Janie, can you explain what you mean by irrigating the wound? Initially, my surgeon delayed chemo until the wound was clearing up. After 4 weeks the drainage was nearly gone, ok'd, folfox, back again all within a week. I do go back in for another follow up in 2 weeks, and I'm somewhat worried she'll delay things again. At a post op appointment she mentioned re-opening the wound (under sedation) to clean or whatever else necessary. My fingers are crossed it's not necessary. I'm probably grasping for straws here, but I was wondering if my stitches could be causing extra irritation. How long did yours stay in? Mine are the dissolvable ones but are similar to a real thick fishing line. I'm close to 8 weeks post op and wonder if I should have them removed. (Ouch)

I really appreciate your advice, it's so helpful to hear I'm not alone in all of this. I'm having a total of 8 rounds, which if things stay on schedule I'll be finished mid June. In time to enjoy the summer off with my children, 10 & 3.
31/wife/mom/CAN
Rectal IIb - 08/16
ChemoRad - 09/16-11/16
APR - 01/17
Complete Pathological Response
Folfox 03/17-Present

MissMolly
Posts: 241
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Some post APR questions..

Postby MissMolly » Sun Mar 19, 2017 9:11 am

Unsettled healing and waxing and waning drainage is not uncommon with a perineal wound.

The closure of my "backside" wound took the better of 8 months. It would heal, somewhat . . . only to later dehiss with drainage secretion. The perineal tissues are more fragile than in other areas of the body and the stresses placed on the tissue site encountered in basic daily activities (sitting, bending, reaching) also serve to slow/delay wound closure.

Purchasing a dense T-Foam cushion with a sacral cut-out (shaped like a horseshoe) can be a life-saver. The sacral cut-out effectively unweights the perineal area and allows for circulation to the wound bed.

DO NOT sit on a donut-shaped cushion. A donut-shaped cushion will spread the butt cheeks apart - not a desirable state.

Showering is a good way to keep the wound bed clean. Do not clean the area abrasively with a wash cloth, however. Just allow warm, soapy water to rinse the wound bed. Gently pat dry or air dry.

Feel free to visit the United Ostomy Association of America (UOAA) support forum. You will find a number of members with anal closures who can help you through the healing process.

www.ostomy.org
- Karen -
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

PainInTheAss
Posts: 609
Joined: Tue Jul 02, 2013 3:08 am

Re: Some post APR questions..

Postby PainInTheAss » Mon Mar 20, 2017 5:50 am

Ditto what others have said. My APR was 3.5 years ago. I had to have mine abraided (dead tissue scraped out... Unbelievably painful when you wake up from that) and had a wound vac for 2 months. My wound took almost two years to completely heal. It was the size of an olive at 4 months, then the head of a qtip, then half a head, so the healing slowed way down when there wasn't much left to heal. I would find myself having more drainage and blood after being more active. Don't be surprised by this the better you feel and the more you get back to your normal routine. Especially when you start to sit normally. I sat on a cushion for a year, but once I started to sit normally, I had more pain and drainage. For 10% patients, the radiation makes it very difficult for the tissue to heal properly. I also had to postpone chemo because my wound wasn't healing.

Urinating was excruciating post surgery, like someone stuck a piece of glass up there. I started to notice a connection between wound drainage and pain and my bladder pain. When I had drainage and more pain, my bladder pain was worse. This gave me hope that when the wound finally healed, I would no longer have bladder pain. It took so long, that I thought I would have it the rest of my life. It no longer hurts.Yay! And it's easier to get my flow going than it was post surgery. That seems pretty normal now. I cried every time I peed for about the first month because it hurt so bad. Those were not fun times. Things are much better now. The only real problem I have now is that if my bladder is really full and I wait too long to go, some will leak out. I wear pads or keep wadded up toilet paper there, but it's not so bad that I need depends. I don't have any problems if I go regularly,

But I swear to god, I'm still getting drainage, There's no pain and no obvious "hole," but I get that smelly discharge in my crack that smells like the drainage I had after surgery. It had stopped for a while, but then it came back. I'm not sure what I did, probably squatting too much doing house or yard work.

The mind has a tendency to project the present circumstances into the future. This can be overwhelming and depressing. Just take one day at a time. Try not to think too far into the future. And be very, very, very patient. I read a lot and kept my mind busy while I was recovering from surgery and going through chemo. It will get better, and it won't be this bad forever.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6

JJ2212
Posts: 262
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Some post APR questions..

Postby JJ2212 » Mon Mar 20, 2017 5:01 pm

MegTayMcc wrote:Janie, can you explain what you mean by irrigating the wound?


About 3 weeks post-surgery, I noticed that the drainage became a bit smelly. At my follow-up appointment with the surgeon, he determined that it wasn't infected yet, but that the wound needed irrigating to be kept clean. So every day, anurse would come to my home and clean the wound with a syringe of saline solution. The syringe would be inserted into the hole and the saline solution would 'irrigate' the internal tissue to kkep it clean. Then the nurse would pack the wound with a thin mesh using a qtip. The mesh would stay in until the next day.

This was thought to be helpful with healing the wound at the time. After many weeks of this and no improvement in the size or drainage of the wound, my surgeon recommended dropping the mesh and just basically keeping the irrignation part. This wasn't pratical as someone else had to do it for me, so I just used the shower to gently send a flow of water into the area where the drainage came from. This has kept the wound from becoming infected.

From my experience, chemo stops the wound from healing, or slows healing to a snail's pace. In my non-expert, non-medical opinion, delaying chemo isn't a viable option since you'd have to delay it quite a while to get the wound to heal completely. It sounds awful, but the pain lessens with time and you get used to dealing with the drainage. Even now, 3.5 years later, I still wear an abdominal compress (a 6-inch square pad of absorbent cotton) in my undies to catch the drainage, all because I'm on chemo for life. The only time I wasn't on chemo, the wound closed up within 4 months.

My stiches weren't the melting kind in the perineal area, they were taken out 4 weeks post surgery. The melting ones can take a long time to be absorbed by the body, so it's possible that they aren't helping with your pain but please ask your surgeon.

After many consultations with my surgeon and wound care nurse, we've come to the conclusion that the drainage will remain as long as i'm on chemo. As long as the area is kept clean, there isn't much I can do about it. I've had a few times when the drainage became extra smelly and that told me that I was close to an infection, so I would have the wound irrigated to get a better clean.

I know it's disappointing to hear stories of long delays in healing. I remember being upset post-surgery when I thought it could take 4-6 months to heal. I'm not sharing this to bum you out, but to let you know that there are ways of dealing with it that don't greatly affect your quality of life. Also, everyone is different so you could very well heal quickly once chemo is done.

Good luck!
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri


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