Need Advice, in pain - Perineal Wound Wont Heal After Colostomy

[ashlygt]

So, a little history on myself... I have a permanent colostomy due to destructive rectal/anal disease. I had the whole surgery done..everything has been sewn shut. The perineal wound has not healed and it has been almost 2 years since surgery. For about the past 2 months I have been having on and off pain up my butt where my rectum used to be. Sometimes it is a dull dragging/pressure feeling and other times it is a shooting spasm. When I first had the pain it lasted for about a day and a half so I called my surgeons office where I was told I was having phantom pains. I accepted that as a reasonable explanation for the pain, but since then the pain has continued to a weekly occurrence. Should I call the surgeon again? I don't want to seem like a hypochondriac. What do you guys think?

Side note: I have been going to my hospitals wound clinic where I see a nurse practitioner and have told her about this pain. She seemed concerned, but didn't have an answer for me.

 

[Jennifer]

I haven't had that particular surgery but I have had a resection and do experience phantom pains at the surgical site. The phantom pains started about a couple months after surgery and would sting and throb. As time passed the pain was less often and less severe. The problem I see here with you is that your pain is fairly recent and you still have a wound that hasn't healed. My main concern is that you may have an abscess or something going on. Do you have any drainage at all? Could you request an MRI or CT scan from either the surgeon, the wound care clinic or your GI or GP to see what's going on?

 

[ashlygt]

I do have a lot of drainage due to the wound that has not healed. I don't have a fever so I doubt it is an abscess. Aren't fevers typical of abscesses?

 

[Jennifer]

I don't have any experience in abscesses or fistulas but from what I've read is that you don't have to have a fever to have an abscess especially if its near the surface.

"Symptoms of Anal Abscesses

Superficial anal abscesses are often associated with:

Pain, which is usually constant, throbbing, and worse when sitting down
Skin irritation around the anus, including swelling, redness, and tenderness
Discharge of pus
Constipation or pain associated with bowel movements

Deeper anal abscesses may also be associated with:

Fever
Chills
Malaise

Sometimes, fever is the only symptom of deep anal abscesses."
http://www.webmd.com/a-to-z-guides/anal-abscess

Since there's drainage it may also be a fistula.

"An anal fistula is a tubelike passage (tract) from the anal canal to a hole in the skin near the anus. This may occur after rectal surgery, after an abscess in the rectal area, or as a complication of a bowel disease." http://www.webmd.com/digestive-disorders/anal-fissure-and-fistula

I'm not saying that those are the only possibilities. It could be that the wound is in a bad spot making it harder to heal due to moving around etc yet it could also be a Surgical Site Infection http://www.drugs.com/cg/surgical-site-infections.html (hard to believe after almost 2 years but as you said the wound has yet to heal). If it is a SSI then a biopsy can be done to figure out the best way to treat it yet focusing on getting the wound to close faster is also important otherwise you'll just keep getting treated for the infection but never prevent it.

How large/small is the wound? Is it kept covered at all? Is it packed or too small for packing (or a bad spot for packing?)? What color is the discharge/drainage? Does the drainage have a foul odor? Are you on any medications currently that may be slowing down the healing process?

I'm going to tag Afidz in here as she's dealt with the wound care center on many occasions.

 

[annawato]

I recently had an anal abscess and did not have any fever with it. I also had cellulitis and an abscess in a wound in January and I didn't have high temps with that either - I did have some low grade temps but only knew cos I was taking my temperature.
I don't think you are being a hypochondriac and think that you should follow up with your surgeon or regular doctor. Two years of a wound not healing seems excessive and there may be something else that should or could be done.

 

[ashlygt]

Yes, I agree that 2 years is a very long time. My doctors think the wound isn't healed because it is inflammation. I'm on remicade, but it hasn't helped. Now I have this internal pain occasionally so I am at a loss for what could be going on.

 

[DJW]

I still get phantom pain 28 years later. Mine doesnt last very long. I'd also be pushing for further testing.

 

[annawato]

Hi Ashly, just wondering how you are going and if you were able to see anyone about your pain?
:heart: anna

 

[ashlygt]

thank you for asking! i called my surgeon and he said that i had phantom pain, but wanted to do an EUA to check things out. i know for a fact what i am experiencing is more than phantom pain. it happens everyday 75 percent of the time. i have issues with the wound in my bum not healing as well so i think they are related.

 

[GutlessWonder86]

have him culture the drainage to rule out infection. I've had an abdominal wound that won't heal since surgery on 6/20 and it's been draining. No fever or odor from wound drainage at all so the infectious disease MD cultured it. Turns out I have a staph infection so I'm on Keflex for 2 weeks.

also, see if you are a candidate like I am for electrical stimulation therapy via rehab. it's a painless therapy where electrical currents are sent to the wound to increase blood flow which helps the skin/wound area close.

 

[PsychoJane]

Turns out I have a staph infection so I'm on Keflex for 2 weeks.

I don't know if your condition improved at speed rocket like mine but the same (well it was streptococcus) happened to me last year. They kept saying I was not healing properly and it was all normal and due to crohn and that maybe I should be back on humira cause my body was just inflamed due to my condition... until I caught a strep throat by cross contamination with my wound dressing most likely. Once they figure that out, they went back on the culture they made on day one (that is how our local health center proceed with wound care) and realize that I had strept in excessive amount since day 1... Surgeon just never picked the report up it seemed. So it was not healing for 2 months without symptoms beside the clear draining and the absence of healing...

So I can only strongly second what gutlesswonder said about the need of doing some culture on your drainage...

I hope you can quickly find a solution to that pain.

 

[GutlessWonder86]

and if worse comes to worse, get a 2nd opinion if your surgeon refuses to listen good luck to you

 

[annawato]

Yes a wound culture is essential, I had the same problems as PJ and Gutless wonder with a wound taking ages to heal. It was only when I developed cellulitis and got put on keflex that the healing took off. I'd forgotten about that until PJ and Gutless wonder mentioned it so sorry for not thinking about it earlier.
:heart: anna

 

[San_30]

Hi im new to here and having exactly the same problem, im 29 from england, had my colon rectum and anus removed in 2010, since they sewn it up it started to open after about 6 months and since then ive been left with a chronic sinus wound where the anus used to be.

Ive had a district nurse come to my house every day for the past two years to pack this open wound and its just not healing, it leaks constantly with green mucus so i have to wear a pad all the time. I was referred to a plastic surgeon last week and he said theres an operation that could fix it which is called a gracilis musle flap procedure, has anyone heard of this? Its basically where they cut u from the inside of your knee to your inner thigh to remove a gracilis muscle to then fill the wound and construct my bottom area.

Its all become too much recently as i dont want another operation. Since the age of 21 ive had at least one operation every year, i deal with the my crohns, permanent ileostomy and. Everything else very well and im a very positive person but its just become to much to handle, if i have the op im left with another huge scar and its not guaranteed to work and if i dont have the op im left with this oozing open wound for the rest of my life, i just dont know what to do anymore.

I have an amazing family and boyfriend but its starting to take its toll and its now affecting my relationship and the intimacy side of things, nobody understands what i go through and i feel i have noone to talk to so ive decided to come on here to see how other people deal with it?

I have pain in the area where it feels like something is stuck up there then it goes away this happens all the time, its currently infected aswell so im on a course of antibiotics, it works and the pain stops bu lt when i finish the tablets it comes back again

Im sorry to sound negative as ive said im normally really positive and upbeat but lately its just become too much, my stoma nurse has referred me for some counselling, im really hoping it helps

 

[ashlygt]

san 30 feel free to message me to talk!

 

[annawato]

Hi San, I am so sorry that you are going thru all this. It truly is an annoying disease. Have you had wound cultures done so that the appropriate antibiotic is being used?
are you GI and CRS aware that you are still struggling with these problems?
I can understand your reluctance to have further surgery but maybe it would be worth it in the end if it fixed the problem. 2 years is far too long to suffer and its not surprising that even in a positive person it is beginning to make you depressed. Whilst the surgery will be a real hassle and will cause more scarring its a small price to pay to get over the problems you are having now. In the scheme of your whole life it could make a huge difference.
My heart goes out to you and ashlygt having to deal with these problems and I really hope you can resolve it soon.
I'm going to (try) move this thread to the stoma sub forum in the hope that others who have similar problems my be able to help. I hope this is ok with you ashly.

 

[ashlygt]

Thank you everyone for your support! I had an exam under anesthesia this week and my surgeon said that he will not do any excessive surgery on my wound. He did a debridement and I go back in 2 weeks to have another debridement. He will do it in the office visit and I don't have to go to the OR. I am a little at a lost for this though because the nurse practitioner that I was seeing at the wound clinic says my wound has gotten worse and when my surgeon looked at it he said that it was really small - even too small for a wound vac. It bleeds a lot too. The nurse was even taking pictures of it and I saw it and seen that it was worse. We will see what my surgeon says when I go back on October 10th for the follow up. Still no explanation for the internal pain.

 

[annawato]

Have you thought of getting a second opinion? I find nurses generally have better insight than doctors particularly when she is seeing you every day and can see how its all progressing.

 

[ashlygt]

No I don't think I am going to get a second opinion. The disease around my wound is partially Crohn's disease. I had such destructive perianal disease before my surgery to remove my rectum and anus that even though I had them removed my Crohn's still wants to attack in that area (now the its just the skin). My surgeon mentioned a flap closure, but he said that he would probably make it worse because the trauma would just trigger my Crohn's to flare up and would make the surgery useless. I go back to see my surgeon on the 10th, so we will talk more then and I am also going to mention the internal pain again. I had it again yesterday and this morning really bad. It woke me up this morning and I couldn't go back to sleep.