Sorry if this post in a odd spot as this is my first time ever doing anything like this. I am a 33 year old male fighting Crohn's since I was 20. I have had one bowl resection and 7 different surgeries to try to fix rectal fistuals and rectal abscess. About three weeks ago my CR surgeon place a Seton Drain in me. To this day it continues to drain alot and cause me a great deal of pain. I have a hard time sitting at all, or doing any vigorous activity. This is hard as my hobbies are skiing, golf, and watching movies. To make matters worse I drive a crane for a living. Over the years I have never abused pain medicine but have built tolerances. Last week blood count went sky high and they admitted me to hospital and treated me with IV antibiotics and pain medicine. Don't know what comes next, surgeon says drain may stay in till it wears out! It is impossible to work because I can't take pain meds while running a crane, have no way to shower or clean myself after bowl movement(porto-potty)and just can't keep pain under control with vicodin or percocet anymore. I'm open to any sugestions. THANK YOU.
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- Thread starter Titus
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Help Support Crohn's Disease Forum:
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Hey there Titus. Good to meet you, tho I wish it were under nicer circumstances :-( . Like Pen suggested, I've moved your post so you have your own thread and will get answers specific to your situation.
Also copied it onto the main forum where you'll get to meet more people. Hope you don't mind!
Also copied it onto the main forum where you'll get to meet more people. Hope you don't mind!
Titus you and I are in very similar boats. I currently have 3 setons and they are extremely painful. I was taking Percocet which was barely lasting 3 hours but my doctor's office kept treating me like an addict everytime I asked for a scrip so this week I ask for Loritab and it does nothing for the pain. I have tried two different plugs and have been taking Humira for 3 years. I had this fistula for 9 years and after a session and a half of Remicade it went away. Then 3 years ago it came back. Might I suggest once the fistula has drained and seems to be on the mend asking about Remicade? For the meantime I sit on a coccyx pillow and I carry toilet wipes. The wipes work best when I am not near the shower for a hose down.
hii Titus, i have 3 fistulas too, but only one has a seton. i have had it for 5 years, and there are times when i don't even feel it. when i am flaring though it feels like it is a ring of pain instead of rubber. i don't know what i would do without tucks pads. they help to gently cleanse when i am not at home. it was really hard to get used to it at first. the pain lasted for quite a while... my GP gives me tramadol to help with the pain because i can take it with tylenol. it isn't as strong as percocet. taking baths helps too.. i hope you and your doctor can figure something out soon for you. pain sucks.
hangingon can I ask you a question? I noticed in your signature that you have an ostomy (sorry I can't remember which ones were listed), yet you still have a fistula? My Surgeon is trying to talk me into have an temporary ostomy, he said he would know which he would do until he got in there, as a fix for the fistula. Well not a fix but he assures me that with the ostomy the fistula will calm down and then we will be able to repair, then do a reverse. I am very against this because I feel it is very invasive and since I have had the fistula repair itself in the past I know it can come back. Who wants to go through the ostomy and reverse only to have it come back in a few months or a couple of years? So you have an ostomy and a fistula?
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Does it help any to take the warm epsom salt baths after work? Maybe you can pack some of those wet wipe things and bring them to work. Another thing that has helped me so much is this stuff called Bactine spray, its antibiotic spray with lidocaine in it so its refreshing pain relief after a bowel movement. I spray it on my gauze and tuck it in my butt cheeks right on the open wound. Might help, I got it at CVS.
hey heameljon, i don't currently have an ostomy. i did after my colon was removed so i could heal. after the take down i was in remission for 7 years. then i got a fistula. when they removed my colon they thought i had ulcerative colitis. now they think i have crohn's. my doctor has pitched a temporary ostomy to give my bum a chance to heal. but... honestly i've had one fistula removal and within a few months got another... also i've recently developed a couple more... i think of an ostomy more as a permanent solution, and have told my doctor it is a last resort only. i am also resigned to living with a fistula or two. sorry i took so long to answer...
