- Joined
- Oct 5, 2007
- Messages
- 26
So, it has been awhile since I last posted - who knew I would still be dealing with this years later? I just came home from the hospital after my 12th slice and dice (abscess drainage) and have been sitting here reading the forums looking for advice.
This most recent surgery came a out after an appointment this week with my new GI, an amazing DR if there ever was one. He saw what was going on, got a hold of a surgeon he recommends and had me in the hospital in 24hrs - something unheard of with my previous group of doctors.
That aside, my specialist has had me do a bunch of tests, cameras up, cameras down, blood, etc over the last few months. The cameras could not get everywhere due to inflammation which makes him think there could be some "areas of concern" so I have to go get my cat scanned (which movie is that from?) this week to see if I am pock marked like the moon in that section.
Pending the results of this scan my GI is thinking my next best option is now a temp ostomy. So, yeah, probably the worst news I have received to this date. I have read many posts from many people on both sides of the fence, many yeahs, many nehs, I have to say so far I fall on the "dear god no, anything but that" side.
So, as for what the treatment has been so far. I currently have 6 setons placed, down from a high of 12. I am maxed on Remicade, 7 vials every 4 weeks, most recent blood shows high amounts of the drug at the 4 week period and no antibodies - so the remi should still be effective. I added Imuran back into the mix a year ago, 100mg everyday to make the remi more effective. I get solucortef (sp?) with every infusion.
Yeah, I smoke (have a quit date of next Saturday - thank goodness for champix), I like to eat (diet starts tomorrow - ummy no sugar), cut out the chemicals (aspartame, sucrolose, but keeping caffeine, you would not want to see me mad - Hulk Smash!)
I am looking for alternatives to the ostomy. Seriously would eat squirrel testicles if it meant not having an appliance (even give up caffeine, though it would not be pretty). I am hoping to hear from some people that have had success using alternative therapies; hyperbaric, diet, medications, naturopaths, fricken lasers beamed at my toes if it works, to help aid in the healing my puckered butt! Plugs, firbrin glue, and the flap surgery do not seem like viable options as per the doctor - disease not controlled enough for it.
Any help or research you could point me at would be appreciated!
This most recent surgery came a out after an appointment this week with my new GI, an amazing DR if there ever was one. He saw what was going on, got a hold of a surgeon he recommends and had me in the hospital in 24hrs - something unheard of with my previous group of doctors.
That aside, my specialist has had me do a bunch of tests, cameras up, cameras down, blood, etc over the last few months. The cameras could not get everywhere due to inflammation which makes him think there could be some "areas of concern" so I have to go get my cat scanned (which movie is that from?) this week to see if I am pock marked like the moon in that section.
Pending the results of this scan my GI is thinking my next best option is now a temp ostomy. So, yeah, probably the worst news I have received to this date. I have read many posts from many people on both sides of the fence, many yeahs, many nehs, I have to say so far I fall on the "dear god no, anything but that" side.
So, as for what the treatment has been so far. I currently have 6 setons placed, down from a high of 12. I am maxed on Remicade, 7 vials every 4 weeks, most recent blood shows high amounts of the drug at the 4 week period and no antibodies - so the remi should still be effective. I added Imuran back into the mix a year ago, 100mg everyday to make the remi more effective. I get solucortef (sp?) with every infusion.
Yeah, I smoke (have a quit date of next Saturday - thank goodness for champix), I like to eat (diet starts tomorrow - ummy no sugar), cut out the chemicals (aspartame, sucrolose, but keeping caffeine, you would not want to see me mad - Hulk Smash!)
I am looking for alternatives to the ostomy. Seriously would eat squirrel testicles if it meant not having an appliance (even give up caffeine, though it would not be pretty). I am hoping to hear from some people that have had success using alternative therapies; hyperbaric, diet, medications, naturopaths, fricken lasers beamed at my toes if it works, to help aid in the healing my puckered butt! Plugs, firbrin glue, and the flap surgery do not seem like viable options as per the doctor - disease not controlled enough for it.
Any help or research you could point me at would be appreciated!
