Update on my Wound

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Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 7/6/2011 9:14 PM (GMT -6)   
For those of you don't know I had a total proctocolectomy on June 11th of 2010. I was in the hospital for a month with complications and my butt wound developed an infection and opened up. The hole was about 7 cm deep and constantly having mucous and blood discharge.
I've been having a nurse come pack it with various dressings and that has not worked. I also had a wound vac for 3 months and that did nothing. I then had a debreidment surgery and it did nothing.
I finally got sent to see a plastic and reconstructive surgeon to have plastic surgery. He looked at the wound and said it is infected and thats why its not healing. He decided to go back to packing it with silverdine. I've been seeing him once a month for 3 months and last month he switched back to silver alginate because he said the infection was down.
I ended up seeing him last Friday and he said it was still the same. I asked if I could get a rx for Puracyn because I have heard really good things about it. So he wrote me a rx for it but the only thing is I can't find it anywhere. No pharmacies around here carry it. I can only find the OTC solution online.
They took the wound dressing out and packed it with gauze in the office. They kept pushing it and pushing it in and the pain was unbeleivable. When I pulled it out the next morning the gauze was actually almost 3 feet long packed in a 7cm hole. It started gushing blood and I was in so much pain. When the Dr packed it he said that its supposed to be packed REALLY tight. Is this true? I don't know if I can put up with it if it has to be packed THAT tight every day. Can anyone shed some light on this? Also where I can get this puracyn at?
He says that there is probably a bacteria preventing it from healing but we just dont know what.
I just want to be able to work, sit and go out again. I've lost so much because of this. Money, friends, happiness etc...
 
 

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/7/2011 6:10 AM (GMT -6)   
Brian, I'm so sorry you're still having so much trouble with the wound, just sounds horrible.

It's funny, but last night I went to a support group, at a different hospital than I go to, and the nurse at the group told me afterward that packing the wound too tight can be a reason why it doesn't close. I don't think that's the issue in my case, but something to wonder about in yours.

Does the plastic surgeon do a lot of wound care? Just wondering. Did he say that the infection has to be all the way gone to have the surgery? That would make some sense. It does seem weird to me that he is the primary care person now for your wound.... I'm not familiar with puracyn, is it an antibiotic?

Not sure if you read my post, but later in the month, I'm going to have a wound vac and if that doesn't work go to a plastic surgeon too. My surgeon says mine is absolutely not infected, but it's not healing because I just can't make enough tissue to counteract the friction that goes w/the wound location. She says heavier people heal much better from these wounds.

Just saying, that there are other reasons why these wounds don't heal besides bacteria....

I would be thinking second opinion at this point, if at all possible. Do you go to a teaching hospital? If not, can you?

I hope something starts working soon.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 7/7/2011 4:46 PM (GMT -6)   
hi Brian, you have my sympathy, you have certainly been thru the mill, i would be inclined to agree with Blueglass about getting another opinion as your current drs are not doing you any favours - maybe someone on this forum could recommend an expert dr or well respected hospital - i had my op in May 2010 just before you & i remember your posts back then - ? has everything else healed up ok & is all ok with your stoma. if so, then if you can get this last thing sorted out you'll be heading back towards a happy life.

i wish you the very best Brian & i hope that in a short time you will get to enjoy the quality of life you well deserve - am rootin for you
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 7/8/2011 12:14 PM (GMT -6)   
Blueglass- Before I went to this surgeon I had 3 wound care nurses working together to treat me as well as the surgeon who made my stoma. Since they couldn't treat it they sent me to this surgeon (plastic and reconstructive) to close the wound. It would actually be a pretty dangerous surgery and they would have to pull part of my stomach down into the wound in my butt. Then they would do grafts from other parts of my body to fill the rest. And even that could fail.
Once they sent me to this guy he looked at it and said it was really infected and said that's why its not healing. When there is so much bacteria it can't heal. He said he'd rather treat the infection and get it to heal since it's safer and he can't do surgery anyway if it's infected. I think this guy knows a lot more about healing than some of the people there.
The surgeon told me that there is 600 types of bacteria that can keep the wound from healing. This puracyn/microcyn kills bacteria including mrsa and speeds up the healing process by oxidizing the tissue in the wound. I actually read about it on another ostomy board. The person said their wound wasn't healing, tried this and it healed in 6 weeks. I've done a lot of internet research on it and and its helped a lot of non healing wounds and there is nothing negative about it. The only problem is no places around here carry it. I am working with the company right now to have it sent to a pharmacy near me. Hopefully it works out.
I've also tried the wound vac and it did nothing for me. It just irritated the skin around my butt and was very painful to take the foam out because it would bond to my skin and I would pretty much rip the tissue out every time I took it out. Then it would bleed badly for 5 minutes.
I do go to a teaching hospital. University of Chicago. They were great for my crohns and even got me on trial drugs (which unfortunately didn't work).
I've thought about going to "wound treatment centers" around here but I doubt that they have had many cases where my wound is located.

Villager- Once I get this Microcyn I am going to try it out for a while and see if it does anything. Otherwise I will have to figure out another option. The surgeon that I am seeing now said he used to use it, but now that the hospital doesn't carry it, they don't use it for treatment.
The surgeon who did my stoma did a great job. I've been fortunate not to have any problems whatsoever in that department. I have not had any leaks or anything so that's good.
And yeah I just want my life back. I spend my days laying on my sides and switching sides when one gets sore. If I sit for more than a half hour I get blood and mucous from the wound and even from laying for a few hours I get discharge. I've gone out to eat a few times and all I could think about is I need to get back home because I am in pain and I wonder if there is blood on my pants.
I have not gotten a single paycheck since last May of 2010 and dissability says I am perfecty fine to go to work (ya right, I can't even sit at a computer desk).
Sorry if I am complaining it's just it seems like the only people that get it or even care are the people on here.
Thanks for listening.

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 7/8/2011 1:15 PM (GMT -6)   
I'm so sorry Brian to hear all of this. I will think of you and hope that Microcyn helps. I'm also in Chicago, and have acquaintances' that use University of Chicago. They have all had successes with their issues. Your not complaining, this must be so hard for you. Hope you can get past this. The plastic surgeon you stated is knowledgable in wound care, but the debate on packing tight/not so tight, is puzzling and could jeapordize healing. I had a plastic surgeon tell me that nurses, WOCN or not, should not give out medical advice because they don't have a medical degree. But WOCN's are the one's dealing strickly with wounds, my WOCN knew more than my colorectal surgeon...so what is logical and how are we to help ourselves when they are disagreeing with each other? Maybe that "wound treatment center" you suggested isn't such a bad idea for now, I know your frustrated, but you have to try everything...you've been suffering for too long!!!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 7/8/2011 1:36 PM (GMT -6)   
Brian I hope you have a good result with the Microcyn - believe me I dont consider you to be complaining at all - you need to get it off your chest & we here have been thru it to some degree - you have had a bad bad year & with your other healing done & the stoma working well, its a dam shame that youre not over the final hurdle YET - the fact that you have kept it together at all is testament to your strength & its a good indication that once you are fully healed you'll be invincible - you'll not come up against a bigger physical challenge again

i wonder if any others on this forum (readers & contributors) who have had similar problems with this wound for a long time could chip in with what eventually worked for them - its a long shot but the answer might appear

best wishes & hope you can hang in there
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/8/2011 3:45 PM (GMT -6)   
Brian, sorry I realize you did tell me some of those details before, hard to keep track of everything. It sounds like the microcyn is very promising, and I so hope it works so you can be done with this.

I wouldn't assume that the wound treatment centers are not familiar w/your wound.... your case is extreme, but it's very common to have trouble healing the butt wound, and they are the ones who get the extreme cases, so maybe they do know something . My take is that there are some people who are absolutely fascinated by wounds and wound healing.... don't really understand that, but I'm so glad they exist.

I like what Villager said, go with that -- you'll get through this, and then you'll be invincible! And it would be cool if others had ideas, sounds like that's how you got the microcyn idea.

BTW, I grew up in the Chicago area .... haven't lived there as an adult, though.

Hope something works soon. Thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

windy city
Veteran Member


Date Joined Dec 2010
Total Posts : 607
   Posted 7/9/2011 10:34 AM (GMT -6)   
Brian...
Last night, as I was trying to sleep, of course a thought popped in my head (gotta love those).  I myself, have been researching for a plastic surgeon that specializes in complex abdominal wall reconstruction (mine looks horrible.)  I found 3 surgeons that I felt qualified, as there are only a few in the Chicagoland area.  I already had a consult with one, upcoming appointments with the others.  One, that I haven't met, sounds like he could assist you.  When I emailed him, he himself, not his secretary, emailed me right back and was eager to meet me.  He is young, 35/36, but a child prodigy.  Graduated Yale at 16 and has completed additional schooling.  As some people have experienced, some doctors could have the best schooling, even being awarded 'Chicago's top doctors' and they fail you.  But what intrigued me of him, is that he's done documented research on wound care, dressings, etc...even receiving a national award from the Wound Healing Society.   I think he might help you, email him, hope he gets back to you a quick as he did for me if he can be able to help you.  Dr. Clark Schierle, Northwestern Plastic Surgery Associates.  Also affiliated with Illinois Masonic & St. Joseph & Mercy.Assistant is Barb at 312-266-6240.  Email: http://www.northwesternplastics.com.  Complete the online form and again...he emailed me personally. 
 
Wishing you the best-Christine

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 456
   Posted 7/11/2011 4:23 PM (GMT -6)   
Thanks for the info guys. I was actually recommended to a surgeon who actually did a surgery like the one I would need and there are articles about him and the success he had with it. The only thing was I wouldn't be able to see him for 3 months because he's booked solid with surgeries. The head of the surgery department at the hospital I am at was available sooner so that's who I am seeing now.

This has been a hassle trying to get this medicine. The RX kind is Microcyn and the OTC is Puracyn. Well I couldn't find any pharmacies around here that have even heard of it so I called the company and they found a pharmacy nearby that they could send it to. Except they need the Rx for Microcyn faxed to them. I'm having a real hard time getting my surgeons office to get on the ball and just fax it so I can have it sent to the pharmacy.
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