My Butt Hurts
Squeals-a-lot!
- Joined
- Aug 2, 2007
- Messages
- 3,953
:sign0144: So here I am, my first post here.
I found the site a few months ago. It's nice to know you're not alone.
I was diagnosed with Crohn's in 2002 at the ripe old age of 33. Having Crohn's with a 18 month old isn't a fun time! It took from February until July to get diagnosed, because I was hyper thyroid at the same time. 40 dropped pounds later, I had a colonoscopy that confirmed Crohn's. They put me on Sulfasalazine, and that cleared me up pretty well. I was on that until midway through my second pregnancy in 2004, when they switched me to Asacol for the last trimester and a year of breastfeeding. Didn't work quite as well as Sulfasalazine, but not too bad.
I had my first flare up (other than the original one) when my daughter was 18 months old. (First symptoms when 1st child was 18 months. First flare up when 2nd child was 18 months. They say that's too far from delivery to be pregnancy related, but it's awfully coincidental to me.) That flare up was controlled pretty quickly.
Fast forward to 2007. In February, I started having more flare up symptoms. Urgency, frequency, mucus in stool, bleeding - you know the drill I'm sure. It's now August, and I'm still having an awful time of it. Sticking with the sulfasalazine, they also put me in a small dose of prednisone - 20 mg, tapering down to 5 mg. The mesalamine enemas won't stay where they're supposed to stay, if you know what I mean. He also put me on Librax, an anti-spasm drug usually used for spastic colon. It also is used for anxiety. My doctor thinks my diarreah is caused by anxeity, because my symptoms are so bad, and nothing else is helping it. What he doesn't understand, is that I'm not anxious about anything. (Just when I'm in public with no bathroom in sight - HA!) He also sent me for another colonoscopy. That comfirmed that I had Crohn's. THANKS! I knew that the first time! I thought that the librax was actually helping a bit. I am now maintaining my weight, but the urgency and frequency are still there. No mucus - who cares.... At my last appointment, he switched my sulfasalazine to pentasa. and also put me on more prednisone, starting at 40mg and tapering down. I guess the pentasa is similar to the sulfa, but starts working higher in the intestines. The only problem with the pentasa, is that it has tiny thingys in it (for bile absorption maybe?) that are in my stool. These may be irritating my rectum, as it hasn't been feeling fun down there lately. I've heard from 2 people that imuran works for them. Maybe I'll check that out. I've heard nothing good about Remicade. It works for a while, but then quits before the next dose. Plus - the possible side effect of BLOOD CANCER just turns me off a bit. I really don't have room in my life for blood cancer this year. No thanks. I will also be getting some probiotics. I read nothing but good about those from this site.
The worst part of Crohn's for me is the urgency. That means no riding bikes to the park with the kids, no nature walks, basically no activities that don't have a bathroom nearby. We upgraded from our $4,000 camper to a $16,000 camper just for the potty (thought the air conditioner doesn't hurt either!!) I just can't make it 4 campsites over to the bath house. I have crapped my pants more times than I care to remember, and my daughter at 2 1/2 got in the habit of telling people "mommy poop unnupan", which means mommy pooped her underpants. Lucky for me, I have no embarrasment quotient. I can talk about poop, rectums, and enemas with anybody who will listen. Once your butt is in the air at the doctor's office - priim and proper is no longer a part of your life. Did you ever drive 10 hours to Virginia Beach with a Crohn's flare up?? Bring a kids potty in your minivan - TRUST me!!
As a school teacher, when you gotta go you gotta go! Luckily the bathroom is 5 feet from my classroom. Luckily, I have 1/2 hour classes 7 times a day, with a 5 minute break inbetween. I have only had to leave a class 4 times, and they didn't even notice. Several times though, I have lined a class up 2 or 3 minutes early and sent them down the hall in hopes that their teacher will meet them. It's worked pretty well so far. Sometimes I have to pretend I'm angry with someone's behavior, so I can just sit down with my arms folded, glaring look on my face and concentrate on not messing my undies. I wonder how other people work. Firefighter? Paramedic? "Oh, let me stop my CPR on you, I have to go poop." Waitress? "Hi, what can I get you guys for dinner? Oh, wait - I have to go poop."
My latest Crohn's "fun" is an anal fistula. I guess that's why I couldn't think of any other name for myself than "My Butt Hurts". It's terribly painful!!! Think of a hemmerhoid - but bigger. It's like sitting on a marble. My colorectal surgeon wants to do a fistulostomy to put in a permanent drain, which includes actually cutting through the rectum (which could lead to rectal incontinence - which I already seem to have some of. HELLO - who invented this awful disease?!?) My fistulas is draining on its own, and has been for 2 years, but now it's filling faster than it's draining. I'm on Metro and Cipro, which helped 2 years ago, but doesn't seem to be helping this time. Warm soaks in the tub help a tiny bit. Who has time for that with a 7 and 3 year old?
Now that I have written my first novel, and you just read it, I'd better see what the kids are doing..........
Hey - why don't they have a smiley face emoticon thingy running to the bathroom, or holding toilet paper or something?? They have one barfing. I suppose a diarreah one wouldn't be appropriate.
I found the site a few months ago. It's nice to know you're not alone.
I was diagnosed with Crohn's in 2002 at the ripe old age of 33. Having Crohn's with a 18 month old isn't a fun time! It took from February until July to get diagnosed, because I was hyper thyroid at the same time. 40 dropped pounds later, I had a colonoscopy that confirmed Crohn's. They put me on Sulfasalazine, and that cleared me up pretty well. I was on that until midway through my second pregnancy in 2004, when they switched me to Asacol for the last trimester and a year of breastfeeding. Didn't work quite as well as Sulfasalazine, but not too bad.
I had my first flare up (other than the original one) when my daughter was 18 months old. (First symptoms when 1st child was 18 months. First flare up when 2nd child was 18 months. They say that's too far from delivery to be pregnancy related, but it's awfully coincidental to me.) That flare up was controlled pretty quickly.
Fast forward to 2007. In February, I started having more flare up symptoms. Urgency, frequency, mucus in stool, bleeding - you know the drill I'm sure. It's now August, and I'm still having an awful time of it. Sticking with the sulfasalazine, they also put me in a small dose of prednisone - 20 mg, tapering down to 5 mg. The mesalamine enemas won't stay where they're supposed to stay, if you know what I mean. He also put me on Librax, an anti-spasm drug usually used for spastic colon. It also is used for anxiety. My doctor thinks my diarreah is caused by anxeity, because my symptoms are so bad, and nothing else is helping it. What he doesn't understand, is that I'm not anxious about anything. (Just when I'm in public with no bathroom in sight - HA!) He also sent me for another colonoscopy. That comfirmed that I had Crohn's. THANKS! I knew that the first time! I thought that the librax was actually helping a bit. I am now maintaining my weight, but the urgency and frequency are still there. No mucus - who cares.... At my last appointment, he switched my sulfasalazine to pentasa. and also put me on more prednisone, starting at 40mg and tapering down. I guess the pentasa is similar to the sulfa, but starts working higher in the intestines. The only problem with the pentasa, is that it has tiny thingys in it (for bile absorption maybe?) that are in my stool. These may be irritating my rectum, as it hasn't been feeling fun down there lately. I've heard from 2 people that imuran works for them. Maybe I'll check that out. I've heard nothing good about Remicade. It works for a while, but then quits before the next dose. Plus - the possible side effect of BLOOD CANCER just turns me off a bit. I really don't have room in my life for blood cancer this year. No thanks. I will also be getting some probiotics. I read nothing but good about those from this site.
The worst part of Crohn's for me is the urgency. That means no riding bikes to the park with the kids, no nature walks, basically no activities that don't have a bathroom nearby. We upgraded from our $4,000 camper to a $16,000 camper just for the potty (thought the air conditioner doesn't hurt either!!) I just can't make it 4 campsites over to the bath house. I have crapped my pants more times than I care to remember, and my daughter at 2 1/2 got in the habit of telling people "mommy poop unnupan", which means mommy pooped her underpants. Lucky for me, I have no embarrasment quotient. I can talk about poop, rectums, and enemas with anybody who will listen. Once your butt is in the air at the doctor's office - priim and proper is no longer a part of your life. Did you ever drive 10 hours to Virginia Beach with a Crohn's flare up?? Bring a kids potty in your minivan - TRUST me!!
As a school teacher, when you gotta go you gotta go! Luckily the bathroom is 5 feet from my classroom. Luckily, I have 1/2 hour classes 7 times a day, with a 5 minute break inbetween. I have only had to leave a class 4 times, and they didn't even notice. Several times though, I have lined a class up 2 or 3 minutes early and sent them down the hall in hopes that their teacher will meet them. It's worked pretty well so far. Sometimes I have to pretend I'm angry with someone's behavior, so I can just sit down with my arms folded, glaring look on my face and concentrate on not messing my undies. I wonder how other people work. Firefighter? Paramedic? "Oh, let me stop my CPR on you, I have to go poop." Waitress? "Hi, what can I get you guys for dinner? Oh, wait - I have to go poop."
My latest Crohn's "fun" is an anal fistula. I guess that's why I couldn't think of any other name for myself than "My Butt Hurts". It's terribly painful!!! Think of a hemmerhoid - but bigger. It's like sitting on a marble. My colorectal surgeon wants to do a fistulostomy to put in a permanent drain, which includes actually cutting through the rectum (which could lead to rectal incontinence - which I already seem to have some of. HELLO - who invented this awful disease?!?) My fistulas is draining on its own, and has been for 2 years, but now it's filling faster than it's draining. I'm on Metro and Cipro, which helped 2 years ago, but doesn't seem to be helping this time. Warm soaks in the tub help a tiny bit. Who has time for that with a 7 and 3 year old?
Now that I have written my first novel, and you just read it, I'd better see what the kids are doing..........
Hey - why don't they have a smiley face emoticon thingy running to the bathroom, or holding toilet paper or something?? They have one barfing. I suppose a diarreah one wouldn't be appropriate.
