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What to do

Location
Ohio
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.
 

mikeyarmo

Co-Founder
Welcome Titus!

I am really sorry to hear about your current difficulties.

Have you made it perfectly clear to your doctors how the seton impacts your job incredibly and your life? I am sure you have, but I want to make sure you have as it is important that your personal situation is considered with whatever treatment option is suggested for you.

If treatment is impacting your ability to work so greatly, is it possible to go on disability leave?

Sorry I can not be of more help. I hope that things can turn around soon for you!
 
Titus!
I am also new to this forum and very excited to hear what everyone has to say and interested in hearing peoples stories. I am 19 and have had Crohns since I was 13. I learned that I feel better when I eat all natural foods and all organic foods. I was taught through some people that our bodies were not meant to handle the processed foods that are readily available and convenient to us. I am was in the hospital about 2 weeks ago due to a relapse and am currently on prednisone and imuran and I hate the side effects. I always feel like something bad is going to happen and it gives me anxiety. I am doing my best to control it with diet and it has been working for the most part. I was down to about 96 pounds a few weeks ago and I am now up to 110.
 

xJillx

Your Story Forum Monitor
Hi Titus and welcome. Ouch! It sure does sound like you are dealing with a lot of pain down there. I imagine it makes your job very challenging. I deal with regular rectal pain and pressure and it sure does making a desk job tough at times; it really can be painful to sit for so long.

What is your current treatment plan? Have you tried Remicade? Many have had great success on it, and the drug does wonders for fistulas. Some have reported an improvement within days of the first dose.
 

KWalker

Moderator
Hey Titus, I just had surgery for my abscess so I know exactly what the pain is you're talking about.. It was terrible! I don't think its very normal to have pain after the seton is in place, although people do say that for the first little while if you're new to it, it can cause discomfort. Have you thought about maybe trying to use a "donut" to sit on? I've never tried one but lots of people on here have and said it helped quite a bit.
 
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