Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Hi all,
I'm not sure if I'm 'allowed' or 'supposed' to do this here, but I wanted to jump right in and get active.. What I've written below is a kind of- breakdown of what's going on/ my reach out to this particular community.
Just as a forewarning, and I'm sorry if this is inappropriate, but I have gone into a bit of detail as far as symptoms go in my writing below..
Anyway, if I wasn't supposed to put this up here, please message me privately and I will happily remove it. Without further ado, here's my story- or, at any rate, a shot at a condensed version:
I'm 22 years old, and I've faced severe health problems all my life. When I was about 10, I was diagnosed with UC. I was medicated- but noone ever really sat down and talked to me. To me, UC was just a reason for the 9 extra pills I needed to take every day- (my doctor 'gently' tossed me into the UC treatments with a whopping 3 pills 3x a day of Asacol) pills which caused constipation and, because of their sheer quantity, nausea.
After years with the same doctor, with seemingly no way to try to control or figure out what caused my random flares, I was in an ER (for an entirely different issue) and was being given painkillers- the ER doctor, though, upon learning of my UC told me that that meant I needed to stay away from certain over the counter pain meds, as they could actually CAUSE flare ups due to their anti-inflammatories( or something like that- it was a few years ago). My GI had Never told me that; I was a kid- I got headaches, cramps, hurt myself sometimes- so, no big deal, right? I took an Advil, or an Aleve.. Except I shouldn't have been taking those. And my GI had no reason to not tell me.
I've switched GI's three times since then and had a few small flares. My latest GI had me scoped twice- each time she said I was clear. She said I had been misdiagnosed- I didn't have UC.
Of course, I was ecstatic.
Until a few months ago, when everything went bad.
I started bleeding- I would notice some in the bowl, some on my stool- it wasn't bad- as in, there wasn't a lot- but I knew that it wasn't something to ignore, either. Still, when I called to make an appointment, my doctor wouldn't be able to see me for at least a month and a half, so I made the appointment and resolved to wait out the mild symptoms I was experiencing.
And then they got worse. More blood, bouts of constipation broken up with days where I'd being going to the bathroom once every hour, feeling wretched with the movement in my body. My abdomen started being tender and sore- at times moving would make me queasy, because it triggered movement in my intestines. I called the doctor twice more- she still could not see me. Finally, I was so alarmed that I ended up calling one night and speaking to the on call physician at the hospital where my GI practiced. It finally seemed to click with my doctor- I got an appointment for a colonoscopy.
My colonoscopy came back with the diagnosis of Ulcerative Colitus. Specifically, mine is concentrated near the 'end of the line'; which explains the brightness of the blood and a few other things. I was given a prescription for Asacol, 3 400mg pills once a day, along with some suppositories (one every night). I was then sent on my way.
It's been at least two months- I haven't gotten better in the least. This is the worst it's ever been- I wake up in the morning with a sharp, sharp pressure in my lower abdomen and have to run to the restroom, where I have explosive gas (this doesn't only happen in the morning, but it's unfortunately a regular start to my day). Every time I go it's bloody. It's rarely an actual 'regular' amount- often it's almost nothing. I have had to give up 'regular clothes'- I have to wear very soft waisted sweat pants, and only the ones which DON'T have that high powered spandex which 'sucks you in' (hard to find). I bloat- my stomach becomes big enough that sometimes it looks as though I'm pregnant.
And I am in pain- all the time, every single day. It's pain, pressure, or that persistent, extremely limiting sensitivity; when it feels like every single move you make causes an almost chain reaction throughout your entire intestinal tract.
I can't function like this- it's frustrating and draining and absolutely infuriating. I feel so helpless- I can't even commit to a summer class, because I don't know if I can take the bus every day. I can't get a job- how could I? Nevermind having to wear actual clothes- what about not being able to physically-or, for that matter, mentally- function?
This is ruining my life- and medication isn't helping. I don't know where to turn. My doctor won't be able to see me for three months this time. I'm so tired, and I just want to be better.
Last night I was out with friends- I was actually feeling well enough to go out and see people- it was amazing. I got back very late at night- my roommates were asleep- and as I went to unlock the front door, I felt my stomach turn over. That familiar pressure seemed to crack through my abdomen like a shot- I hurried inside, frantically dropping all of my things, rushing into the bathroom. I barely made it- and it was so loud that I heard one of my roommates wake up. I was past being able to do anything about it- my head felt fuzzy. I just sat on the toilet for a long time.
When I finally got up and wiped, I had to do so several times; I was- coated- in mucous-ey blood. So was the bowl. I went to bed exhausted by everything, and terrified about what was going on in my body.
That's why I joined this group; heck, it's the only reason I joined this SITE- I'm hoping against hope that I can find people on here who can help me.
I need to get some semblance of my life back.
I'm not sure if I'm 'allowed' or 'supposed' to do this here, but I wanted to jump right in and get active.. What I've written below is a kind of- breakdown of what's going on/ my reach out to this particular community.
Just as a forewarning, and I'm sorry if this is inappropriate, but I have gone into a bit of detail as far as symptoms go in my writing below..
Anyway, if I wasn't supposed to put this up here, please message me privately and I will happily remove it. Without further ado, here's my story- or, at any rate, a shot at a condensed version:
I'm 22 years old, and I've faced severe health problems all my life. When I was about 10, I was diagnosed with UC. I was medicated- but noone ever really sat down and talked to me. To me, UC was just a reason for the 9 extra pills I needed to take every day- (my doctor 'gently' tossed me into the UC treatments with a whopping 3 pills 3x a day of Asacol) pills which caused constipation and, because of their sheer quantity, nausea.
After years with the same doctor, with seemingly no way to try to control or figure out what caused my random flares, I was in an ER (for an entirely different issue) and was being given painkillers- the ER doctor, though, upon learning of my UC told me that that meant I needed to stay away from certain over the counter pain meds, as they could actually CAUSE flare ups due to their anti-inflammatories( or something like that- it was a few years ago). My GI had Never told me that; I was a kid- I got headaches, cramps, hurt myself sometimes- so, no big deal, right? I took an Advil, or an Aleve.. Except I shouldn't have been taking those. And my GI had no reason to not tell me.
I've switched GI's three times since then and had a few small flares. My latest GI had me scoped twice- each time she said I was clear. She said I had been misdiagnosed- I didn't have UC.
Of course, I was ecstatic.
Until a few months ago, when everything went bad.
I started bleeding- I would notice some in the bowl, some on my stool- it wasn't bad- as in, there wasn't a lot- but I knew that it wasn't something to ignore, either. Still, when I called to make an appointment, my doctor wouldn't be able to see me for at least a month and a half, so I made the appointment and resolved to wait out the mild symptoms I was experiencing.
And then they got worse. More blood, bouts of constipation broken up with days where I'd being going to the bathroom once every hour, feeling wretched with the movement in my body. My abdomen started being tender and sore- at times moving would make me queasy, because it triggered movement in my intestines. I called the doctor twice more- she still could not see me. Finally, I was so alarmed that I ended up calling one night and speaking to the on call physician at the hospital where my GI practiced. It finally seemed to click with my doctor- I got an appointment for a colonoscopy.
My colonoscopy came back with the diagnosis of Ulcerative Colitus. Specifically, mine is concentrated near the 'end of the line'; which explains the brightness of the blood and a few other things. I was given a prescription for Asacol, 3 400mg pills once a day, along with some suppositories (one every night). I was then sent on my way.
It's been at least two months- I haven't gotten better in the least. This is the worst it's ever been- I wake up in the morning with a sharp, sharp pressure in my lower abdomen and have to run to the restroom, where I have explosive gas (this doesn't only happen in the morning, but it's unfortunately a regular start to my day). Every time I go it's bloody. It's rarely an actual 'regular' amount- often it's almost nothing. I have had to give up 'regular clothes'- I have to wear very soft waisted sweat pants, and only the ones which DON'T have that high powered spandex which 'sucks you in' (hard to find). I bloat- my stomach becomes big enough that sometimes it looks as though I'm pregnant.
And I am in pain- all the time, every single day. It's pain, pressure, or that persistent, extremely limiting sensitivity; when it feels like every single move you make causes an almost chain reaction throughout your entire intestinal tract.
I can't function like this- it's frustrating and draining and absolutely infuriating. I feel so helpless- I can't even commit to a summer class, because I don't know if I can take the bus every day. I can't get a job- how could I? Nevermind having to wear actual clothes- what about not being able to physically-or, for that matter, mentally- function?
This is ruining my life- and medication isn't helping. I don't know where to turn. My doctor won't be able to see me for three months this time. I'm so tired, and I just want to be better.
Last night I was out with friends- I was actually feeling well enough to go out and see people- it was amazing. I got back very late at night- my roommates were asleep- and as I went to unlock the front door, I felt my stomach turn over. That familiar pressure seemed to crack through my abdomen like a shot- I hurried inside, frantically dropping all of my things, rushing into the bathroom. I barely made it- and it was so loud that I heard one of my roommates wake up. I was past being able to do anything about it- my head felt fuzzy. I just sat on the toilet for a long time.
When I finally got up and wiped, I had to do so several times; I was- coated- in mucous-ey blood. So was the bowl. I went to bed exhausted by everything, and terrified about what was going on in my body.
That's why I joined this group; heck, it's the only reason I joined this SITE- I'm hoping against hope that I can find people on here who can help me.
I need to get some semblance of my life back.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Be aware that loosing so much blood can also make you anemic. UC can make you tired and being anemic can also make you tired. It's a fun double whammy.
Finally, don't be afraid to go to the ER. Especially if you develop a fever or chills or start have uncontrolled bleeding. Like, loosing blood even when not going to the bathroom or loosing a half cup at a time. It's hard to tell how much blood you actually loose because a little bit of blood can look like alot of blood in the toilet. Or go if you are just feeling extremely sick.
dont worry about your post...it sounds alot like other posts ive read here..
I agree that you should probably think about getting to the hospital with the symptoms your having....they will give you an iv which will make you feel less tired. Also something for the pain.
I went through the same thing before I finally got diagnosed a few years ago...I was having the same symptoms and finally landed in the hospital and ended up staying for 2 weeks
anywas good luck and feel free to post any concerns anytime...there is alot of help here and its comforting to know you arent alone
go to the ER if you have to, or even a GP, your GP may be able to give you a script for prednisone, adn get you out of the worst of it while you wait to see the GI.
never be afraid to share your story here, we've all been through it or worse, and we are mostly over being squeemish about toilet issues. I literally made it home today with less than a second to spare before my gut exploded, i had to speed home and was prepared to let a cop chase me home if need be, cuz i wasn't slowing down for anything! I have also pooped myself at work, so no worries, you are among people who understand.
hope you feel better soon, and please see a doc asap!!