Looking for APR patients with non-healing wound

Hi!. My husband is a 52-yo otherwise healthy man who has colorectal cancer. He has had seven surgeries in five years. He had the mother of all surgeries in December 2012 - APR (abdominoperineal resection - removal of cancer from the abdomen, and removal of the rectum - the "barbie butt" surgery), cytoreduction (removal of all traces of cancer) and HIPEC (hot chemo flush in the abdomen during surgery). He also lost a kidney and his gallbladder. He would have died within six months without this surgery, so we are grateful for the chance, but it's coming at a price.

He's an incredibly strong and brave man, but this recovery is killing him. His wound is not healing, he is exhausted from the HIPEC, he is in terrible pain. He cannot sit. Looking for "pen pals" who have had long-healing rectal wounds who are going through the same thing, or who have recovered. Any good news would be welcome. I am trying hard to keep his spirits up.

Thank you.

My situation is different, in that I have Crohn's disease not cancer, so my APR made me feel better than I had in years. But I did have a non-healing butt wound -- I had to have another surgery 7 months after my APR, with a long recovery.... but happy to report now that it's all healed. Not 100% -- I carry an inflatable pillow with me for hard surfaces, but that's no big deal relatively speaking.

I wrote a blog post about some of the practicalities and of how I coped -- I wasn't allowed to sit or bend for 3 months after my second surgery: http://tinyurl.com/c4no2pk . Perhaps there will be some useful tips in there, even though our situations are different.

But the butt wounds can heal, even after a very long time.... he's been through a lot, and it might take a while (mine was open for a year and a half, but it was not painful most of that time.... his surgery wasn't that long ago).

How is he doing w/pain meds?

Hang in. Ziggy, you too. That's a lot.

Hello all. Thank you for your prompt replies.

Quick answers:  Yes, he's eating as much protein as I can shove into him, Prostat AWC, protein shakes, protein bars, and healthy meals. 

Yes, he's on Oxycodone 5-525 (4 times a day) and oxycodone 20 mgs (twice a day), but I don't think it's enough for him.  He's 6'4" and weighs 250 lbs.  Am trying hard to get a referral to a pain management specialist.  No luck yet.

They did not give him a wound vac because it was too awkward.  So, he is being "wicked."  Basically, pieces of kerlix (bandage) - the end is put into the wound, so that it wicks the drainage out.  Not packed.  Four times a day, and I have to do three of them.

I have made him cushions out of foam, memory foam, etc., but they don't help much.  Donuts REALLY don't help.  There is a possibilty that the insurance company will okay a "roho" wheelchair cushion.  That will be interesting as they cost about $500......

I am so sorry that you are all going through such tough times.  I hope you feel/felt that it was worth it.  My hubby gets so frustrated that it's really difficult at times.  Of course he cannot sit and just lies on his side all day long.   Working on getting him to walk etc.

Thank you!

 

AngloAustrian, is he going to some kind of wound clinic or does he have a WOC or ET nurse looking at the wound? There are all kinds of different dressings to try. I did have a wound vac, and it was super awkward, and didn't help in my case, but there have been others on this forum who were greatly helped with one, might be worth it.

Have they tried a silver alginate dressing or something w/silver in it? That can help w/the healing.

Your husband has been through a lot. I have something different, but I was very sick and had been on a lot of drugs, and that made my healing very slow at first too -- but I did get better, want to emphasize that. He's in a very rough time, but healing can happen. Hang in.... thinking of you.

ddd, I didn't need flap surgery -- go figure, but having my digestive system work again, I started putting on weight, and it turned out I had enough of my own tissue then (CR surgeon said the 2nd surgery was better that way than the first, she was in on both).

My wound healed beautifully -- texbook -- until it got to about 3 cm, and then it just stopped. Every time they tried something new, it seemed like it helped at first, and then it bounced back. My surgeon finally recommended the consult w/the plastic surgeon, and he wanted to try silvadene cream first (my ostomy nurse kind of rolled her eyes at this surgeon's devotion to silvadene cream.... ).... so I spent another month or so putting on cream, and then I went for a visit, and he looked at the wound and said he could see perineum, and I needed to have surgery within a week. I was scheduled to go on a plane to visit my family in a few days, and my response was REally???? I've been walking around for 7 months with this open wound and now it can't wait?

So I wanted to see my CR surgeon who I like more and trust more than the plastic surgeon, and I waited a while til she was free, and then walking to her exam room, she was going on and on about how he was making a big deal out of nothing etc. etc, and then she looked at it and said he was right and I needed to cancel the trip. She was worried that it was actually small bowel poking through which she kept saying made no sense, that that only happens in people who are 90 years old.... so she thought she might have to do a whole mesh hernia repair thing, but then they got a CT (after the radiology folks screwed up and didn't go low enough the first time) and it was a fluid pocket.

No one is sure why it happened... I did have an abscess a week after surgery, and that could have caused it... but basically there was a fluid pocket blocking the wound from healing, and that's what happened, and I guess it eventually pushed some perineum through and that's why they decided on surgery.

The second surgery was only an hour and a half long -- CR surgeon cleaned it up in there, and plastic surgeon sewed it shut in fancy layers.... the plastic surgeon was the one w/the strict protocol.... but it worked (and I grew to like him more... now I see him in the newspaper all the time because he does fancy hand transplants).

ddd there is a guy in my in person support group who had a flap repair. He had anal cancer, though, not Crohn's, and I'm not sure what kind of flaps they were; I think there are several ways to do it. They were talking about that for me, but it wasn't necessary. Another thing they talked about if the surgery didn't work was hyperbaric oxygen, which is way, way expensive, but I think insurance would have covered it (but only after surgery was tried). In any case, I might be able to connect you two if you wanted to talk to him about the surgery.... I'm sure another surgery is not high on your list of things you'd like to do.... hope there's a better option.

first anglo.. will not his surgeon help take better control of his pain needs/meds? and yes, see if you can at least get him outside a bit for fresh air. really helps the spirit. my hubby even rigged up a chaise lounge for me outside last summer so I could lay sideways on it. also maybe even short trips with you in the car to run errands. anything to get him out might help.. just make sure he doesn't skip doses of his pain meds if you get him out and about!

blue and brian I don't understand the measurement things with your wounds. Is that the depth of the wound? If so, guess mine is different. Seems there is quite a long sinus tract that goes up into the large open unhealed area... where the jpouch was removed and also where I had multiple abscesses. That's why they could never try a wound vac. They couldn't access the wound with it. Also guess that's why they have to keep doing EUA surgeries for incision and drainage cause the sinus tract keeps closing up from the outside end. So blue.. they kind of just closed the outside tissue on yours with fancy plastic surgery work and that horrid 3month of bed rest??? I guess the muscle flap is where they basically stuff the open space of the wound with your own muscle/tissue from your butt or thigh??? I will keep your contact in mind.. should they approach this gracilis thing with me. I just don't know how long this stuff can go on. In one way I want them to bite the bullet and do it and get this all over with. And another way..it just sounds so scary.

brian I am pissed that your docs took so long to check your blood work. Mine have been diligent about this.. and I too had iron infusions late summer. Didn't do squat for my wound healing though! So glad yours is getting better. 2 years.. that is a long time. And I am whining about just a year!!!