I'm starting Humira soon, the specialty pharmacy my doctor contacted me today finally so as soon as my insurance goes through I can schedule an appointment with them. I didn't know remicade was an option until I had already agreed to Humira but it requires hospital administration and with the travelling I do for my job I don't think it will be possible to schedule the appointments necessary so I'm praying the Humira works!!
Mine is in an awkward place that I'll refer to as limbo so the only way to cover it/catch what is draining is to tape the gauze down. I just use a small piece of nexcare extra sensitive tape on the edge furthest from the actual incision just to kind of hold it in place because I move around so much at work that it would fall out otherwise.
This forum has been my saving grace because doctor's apparently love to leave you in the dark regarding everything. I left the hospital after my surgery with a bag full of gauze pads, tape, and wound cleaner along with instructions to follow up with my PCP and the surgeon who did the procedure. No one told me a thing about
the darn seton. My PCP looked at it and said 'oh i could remove it but I'll let the surgeons handle it since they placed it'. The surgeon looked at it two weeks later, said everything was good and referred me to my CRS to assess it further. I was hoping the CRS would finally give me some answers but that was apparently hoping for too much. He scheduled me an appointment for late October to see if the next step would be one of the surgical procedures or if it could simply be removed. Fingers crossed that the Humira treats the fistula and the seton can be removed without surgery.
Everything I know about
seton drains, fistulas, and crohn's has been thanks to google and healingwell.
U B Tough said...
Hello and Welcome,
I'm sorry you are going through fistulas. They are evil. I've been dealing with 3 and chronic abscessing (7 I & D's) and multiple spontaneous bursts over the last 13 months. They have turned my life upside down, questioned my sanity and led to severe depression. 10 days ago I had another emergency surgery dealing with a massive abscess that took up my pelvic floor. I get the pain....screaming, crying, vomiting, fevers etc. It was brutal. They had to partially sedate me to get onto the surgical bed. They are brutal. I had setons for 8 weeks and they failed. I seem to be the worst case scenario though; so that's good news for you!!
What meds are you on? The standard for fistulaizing CD is remicade. What is the plan to remove setons and fix fistulas?
The amount of pus can vary depending on the location of the infection (high/low) and how strong the infection is. showers/sitz baths are good to continue to drain the infection. I've never heard of taping the gauze. I think the gauze (or try make up pad) should stay in place if it's in between your butt cheeks. Taping can pull the skin and cause other problems. you could also just wear a light pad. You are right to keep the area clean. Try cleaning it with tea tree oil (diluted with a dab of coconut oil as it stings) or collidial silver. Pain can also vary...a pull, tug or stretch in the wrong direction and yikes! I used to dance ballet but had to give it up. My setons went right through my levitor ani muscles which is why I had severe problems, but most people will have discomfort. Try a bath or pain killers if needed.
I'm assuming you have a CRS. Make sure you trust their skills and get a second opinion if needed.
The lack of info provided by CRS about fistulas is alarming. No one tells you anything...maybe just have a bath and place a pad....but nothing about the psychological/social toll and no details about what it means physically. I had to do some mad googling to find sites like this and people here have guided me through but it's still a learning game. I have felt completely abandoned at times. This last abscess is horseshoe shaped and when I pass gas it goes through and burns.....freaked me out at first. Any hospital pamphlet I've read makes it sound so light and no big deal when fistulas are the opposite. I didn't even have supplies ready after my 1st surgery because no one told me anything!!
As far as supplies, I have pads and wipes in every purse...just in case. You could leave a bag in your car, office desk etc.....just in case.
I know it's hard not to worry when these bizzare things are happening to your body. One day at a time. Get on the right meds for you, have a surgical plan, eat well, use as much heat as you can, have fun and know when to call your doctor if something doesn't feel right! I also squeeze my butt cheeks several times a day to try and "milk" the pus out. Oh the joys of this disease.