Stats:
Age: 31
Female, single, no kids
Location: California
Hi, I started lurking around here a few weeks ago when I first got my diagnosis. Took some time to wrap my head around the whole thing. The last few months have been crazy.
My story started with on and off constipation December/January. I started to see some blood on the toilet paper and my rectum/anus region itched and burned. The irritation I assumed was a case of hemorrhoids. I put Preparation H on it and waited for it to go away. It never did! I went to my doctor in February hoping he could prescribe something stronger to get rid of my hemorrhoids. I almost jumped off the table when he tried to do the rectal exam. He sent me home with a supply of Anusol suppositories and was told to eat more fiber. He said the irritation should clear up in about a week. He put in an order for a sigmoidoscopy. He said it would be ok to wait until the irritation subsided. A few days later a chunk of flesh started to protrude from my anus. It was so painful. That's when walking and sitting became difficult. The whole area stated to feel raw. I asked for another round of suppositories hoping the whole thing would just go away if I kept my food intake low and let the area "rest".
The next six weeks were pretty miserable. I was taking 800 mg of ibuprophen every 6 hrs. just to make it to work. My boss was riding my tail every day. I was rapidly losing weight. I lost about 15 lbs. Bowel movements were torture and I was just plain afraid to eat after a while. Some days I made it on a diluted juice alone just to avoid another painful episode in the restrooms at work. I spend most of my work day sitting behind a computer. I could barely concentrate let alone work. Mornings were unpredictable with sessions in the bathroom that seemed never ending. I came in late most days and ended up having to stay late every day to cover the hours I missed.
Then at the end of February something burst. There was blood and a small chunk of dark clotted blood. I figured my hemorrhoid had burst. Liquid started leak from my rectum on and off after that. But the pain continued. So I went to another GP (my doctor was out of the office). She took one look and referred me to a surgeon for a consult. His exam didn't get far. He gave me a note recommending I refrain from sitting upright to avoid surgery. My boss agreed to let me work from home every other day. When I did have to come into the office I laid on the floor and tried to write as much as I could by hand then type it up as fast to get off my butt. I carried around a Boppy pillow to sit on. Everything just seemed to get worse.
On March 18th I woke up from a nap with a feeling like I had to go really bad. I hobbled into the bathroom. Huge blood clots stared to pour out of me. I was terrified. I started to feel dizzy and had a hard time breathing. The blood continued to flow. I knew I was losing too much blood and need to get to ER.
Luckily the bleeding stopped on it's own by the time I reached the ER. The high doses of Advil I was taking was probably the culprit. I was hospitalized for four days. During that time I had a CT, "sedated" colonoscopy (I woke up because of the pain), ultrasound and numerous blood tests. I did my bowel prep for the colonoscopy in the ER waiting for a bed in the hospital. I had lost all dignity at that point. There I was sitting on a commode in my cubicle, nurses coming in and out every few minutes.
At first the doctors tossed around a few possible causes. My mind was too cluttered to even absorb most of it. They sent me home to wait on my blood work. I got the final word from my GI about two weeks ago. I tested positive for Crohn's. The colonoscopy showed ulceration in various spots with the most dramatic inflammation in the rectum. My rectum was a matted mess of tissue. She said she had a hard time working the scope around it all. The matted mess had several areas that she worried would be come potential fistulas so she started me on an aggressive course of treatment.
I started Prednisone 60 mg/day two weeks ago. I'm tapered down to 40 mg today. I started Imuran yesteraday and will have my first Remicade infusion on 4/19. After months of steady decline and no answers all of this just fell on me. I'm kind of relieved to have something to fight against. A legitimate thing. I wasn't just being dramatic, and it's not because of my lifestyle as some tried to guilt me into believing.
I lost about 25 lbs during the whole thing. My body is a wreck. But I'm back on solids. Eating lots of white things. It's funny the whole high fiber thing my doctor initially told me to do was the exact opposite of what someone in my condition should be doing. I was running backwards for over a month.
I'm on short term disability right now. I still can't sit upright for long periods of time and lost a lot of blood during that bleeding episode. I'm just trying to gather information and let my body heal. I'm hoping the combo of drugs I'm on will get this flare under control.
I've already learned so much from just lurking around. I'm looking forward to officially participating. Thanks for reading.
Age: 31
Female, single, no kids
Location: California
Hi, I started lurking around here a few weeks ago when I first got my diagnosis. Took some time to wrap my head around the whole thing. The last few months have been crazy.
My story started with on and off constipation December/January. I started to see some blood on the toilet paper and my rectum/anus region itched and burned. The irritation I assumed was a case of hemorrhoids. I put Preparation H on it and waited for it to go away. It never did! I went to my doctor in February hoping he could prescribe something stronger to get rid of my hemorrhoids. I almost jumped off the table when he tried to do the rectal exam. He sent me home with a supply of Anusol suppositories and was told to eat more fiber. He said the irritation should clear up in about a week. He put in an order for a sigmoidoscopy. He said it would be ok to wait until the irritation subsided. A few days later a chunk of flesh started to protrude from my anus. It was so painful. That's when walking and sitting became difficult. The whole area stated to feel raw. I asked for another round of suppositories hoping the whole thing would just go away if I kept my food intake low and let the area "rest".
The next six weeks were pretty miserable. I was taking 800 mg of ibuprophen every 6 hrs. just to make it to work. My boss was riding my tail every day. I was rapidly losing weight. I lost about 15 lbs. Bowel movements were torture and I was just plain afraid to eat after a while. Some days I made it on a diluted juice alone just to avoid another painful episode in the restrooms at work. I spend most of my work day sitting behind a computer. I could barely concentrate let alone work. Mornings were unpredictable with sessions in the bathroom that seemed never ending. I came in late most days and ended up having to stay late every day to cover the hours I missed.
Then at the end of February something burst. There was blood and a small chunk of dark clotted blood. I figured my hemorrhoid had burst. Liquid started leak from my rectum on and off after that. But the pain continued. So I went to another GP (my doctor was out of the office). She took one look and referred me to a surgeon for a consult. His exam didn't get far. He gave me a note recommending I refrain from sitting upright to avoid surgery. My boss agreed to let me work from home every other day. When I did have to come into the office I laid on the floor and tried to write as much as I could by hand then type it up as fast to get off my butt. I carried around a Boppy pillow to sit on. Everything just seemed to get worse.
On March 18th I woke up from a nap with a feeling like I had to go really bad. I hobbled into the bathroom. Huge blood clots stared to pour out of me. I was terrified. I started to feel dizzy and had a hard time breathing. The blood continued to flow. I knew I was losing too much blood and need to get to ER.
Luckily the bleeding stopped on it's own by the time I reached the ER. The high doses of Advil I was taking was probably the culprit. I was hospitalized for four days. During that time I had a CT, "sedated" colonoscopy (I woke up because of the pain), ultrasound and numerous blood tests. I did my bowel prep for the colonoscopy in the ER waiting for a bed in the hospital. I had lost all dignity at that point. There I was sitting on a commode in my cubicle, nurses coming in and out every few minutes.
At first the doctors tossed around a few possible causes. My mind was too cluttered to even absorb most of it. They sent me home to wait on my blood work. I got the final word from my GI about two weeks ago. I tested positive for Crohn's. The colonoscopy showed ulceration in various spots with the most dramatic inflammation in the rectum. My rectum was a matted mess of tissue. She said she had a hard time working the scope around it all. The matted mess had several areas that she worried would be come potential fistulas so she started me on an aggressive course of treatment.
I started Prednisone 60 mg/day two weeks ago. I'm tapered down to 40 mg today. I started Imuran yesteraday and will have my first Remicade infusion on 4/19. After months of steady decline and no answers all of this just fell on me. I'm kind of relieved to have something to fight against. A legitimate thing. I wasn't just being dramatic, and it's not because of my lifestyle as some tried to guilt me into believing.
I lost about 25 lbs during the whole thing. My body is a wreck. But I'm back on solids. Eating lots of white things. It's funny the whole high fiber thing my doctor initially told me to do was the exact opposite of what someone in my condition should be doing. I was running backwards for over a month.
I'm on short term disability right now. I still can't sit upright for long periods of time and lost a lot of blood during that bleeding episode. I'm just trying to gather information and let my body heal. I'm hoping the combo of drugs I'm on will get this flare under control.
I've already learned so much from just lurking around. I'm looking forward to officially participating. Thanks for reading.
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