my journey (2)
(just reposting this so its connected to my profile again after my last account was accidently deleted)
Hey all!
Stumbled across this website last night, was reading through the vent threads and know oh so well how many of the people there feel….. Brought a tear to my eyes.
I’m a 33 year old male from Australia, & I started pooping blood around November 2006 (I would’ve been 31 at the time), had the nice stomach cramps to go with it. So I went and saw my regular doctor, who sent me to a specialist. The specialist lined me up for my first colonoscopy.
After coming out of anesthesia, he said it looked a lot like Ulcerative Colitis and that I had to come back and see him again. When I went back, he explained the disease a little, but to this day we still wonder if he really told me how severe this kind of disease was, I was kinda under the impression that I carry on as usual with a few meds to settle it down.
I was put on prednisone, and sulfasalazine (Australian drugs may have slightly different names), and I kept getting worse. I moved onto mesalazine, and kept getting worse. Imuran was added in next, but still nothing was helping.
By this time, several months later, I had dropped about 20 kilo’s (think that’s about 40 pounds) from a weight of 90kilo’s that I started at. As time went by, general living was getting harder, every time I ate I was throwing up, and having to lay on my stomach for up to an hour before the pain subsided. I found the only thing keeping any weight on me was beer, and I could have a couple of heavy beers (like stouts) before I needed to throw up.
I also had another growing problem from disease, arthritis.. not sure how many of you had the fun of this affliction that comes with certain IBD’s, but I was getting it really well. 31 years old with the beginnings of chronic arthritis!!!! Can things get any more fun? There were days when I had to call in sick to work, not because of the crohns/colitus, but for the fact that my wrists were so sore with arthritis that I couldn’t actually turn the door knob….. oh what fun…
Lack of information led to my next downfall. I was getting really sick, really often now. I’ve never been a healthy eater, but I always was healthy. I thought of all the good food adverts on the TV, and decided to go for a full on high fiber diet. Fail :*( unknown to me was that high fiber food was shredding my stomach!
I went home early from work the Thursday, then stayed home again on the Friday. I was supposed to stay at my fiancés place on the Friday night, I remember calling her really upset and just telling her even though I was sick I still wanted to come stay. I was pretty sure something bad was coming, I just really wanted to spend time with her before it did.
Friday night, all day Saturday and Saturday night I spent in her bed, only getting up for small meals. About 6am Sunday morning I woke with a fever of 39.8 degrees Celsius, and on that many immuno suppressant drugs and prednisilone, there is no way I should’ve had any type of fever. So it was off to hospital for me, first time in my life.
It really was the first time I thought “holy sh*t, I am really sick”, and sitting in the emergency room really has the ability to hammer those thoughts home. My hospital didn’t have a huge emergency room, so therefore you get doctors that have a broad knowledge of medicine, but they all seem to specialize in their own fields. I don’t think the doctor I got had done a rectal exam in a long time, it was a straight-in finger jab that brought agonizing pain…. A little bit of respect for the patient with inflamed rectal area please…….
And so I was admitted..
The first few days were just spent trying to get me hydrated, and to get my fever down. Day after day on saline drips and broad spectrum antibiotics, and with my veins so damaged by the amount of prednisilone I’d been on, I was introduced to a new annoyance…. It was taking most nurses and doctors 3 or 4 attempts to get the canula’s in without blowing veins. My arms were black and blue with bruising, was awful. When they finally got the canula’s working, they had to tape it down so much so there was no movement whatsoever! LOL, they didn’t want to have to put new ones in.
I’ve often heard the saying about hospital “day 3 is the worst” and that rang true for me. I work up early in the morning and I was really scared for my life. I had the nurse pull the curtains closed around my bay so I could just curl up in a ball and sob. A couple of times other nurses came past and pulled them open trying to get some sunlight in, and I was really quite rude in the way I told them to keep it closed.
The middle of that morning, I had a nurse come in (lovely little lady she was, very kind to me) to start giving me enema’s so I could go have a colonoscopy done. She had administered the first one, and I had to run to the bathroom in pure white agony. It felt like razors getting put up there. I had to refuse the next two enema’s and said the doctors can make do with what they’ve got. I just wanted to be alone, I was so sad. My mother in law came in soon after, she just held my hand whilst I broke down again.
After the scope, the doc’s told me there was a heap of inflammation, but my body really wasn’t in the best state for surgery. They were going to spend the next bit of time trying to get my body a little healthier before any decisions were made, and so began my hospital stay…
More drugs were constantly added into, and removed from, my growing diet of pills. Every time something started to be looking up, something else would fall down. One drug, cyclosporine seemed to be really making a difference in my condition, but then I started feeling “not right” somehow, ends up it was nicely damaging my liver in a way the doctors had never seen before! Ha! Time to get off that drug!
Lol, every time things were getting better, then fell down, schnitzel was on the menu for me! I love my schnitzels! Sooo much, and every time it was available my body would breakdown and they’d take me off food again! I called it the schnitzel effect!
The night of Good Friday 2007 was one of the scariest nights of my life. I’ve had PR bleeds before, at some stage everyone with an IBD has seen blood in the toilet bowl, but what I saw this night was horrible. For the first time in about 12months, I felt like I was doing a “solid”, and sitting there, I was so proud, until I wiped (and as always checked the paper for blood).
My hand was cover in blood, I turned around to look into the bowel, and I have never seen so much blood in my life. I hit the emergency button for the nurse and waited with a massive dread inside of me. A young nurse came in, asked what the problem was then checked the bowel when I told her.
This is where my love for nurses grew, she was so calm and controlled. She just got me to sit down, she called for monitoring equipment and the doctors. She just kept me from breaking down. Whilst she was in there with me, I needed to go again (she didn’t care at all), and I could feel so much more coming out of me, and I could feel it was warm fresh blood. I was thinking it was the end.
I had the nurse get me my mobile phone, so I could make a call to my fiancé. It was about 11.30 at night “hey hon, you asleep? Feel like coming in? I really need you here at the moment”…. I desperately wanted there with me, I explained the situation and she was on her way. The nurses ended up moving me to my bed in the ward (somehow, even after so much blood loss, my BP was almost normal?? They were once again at a loss with what was going o with me..). my fiancé almost always wears heels, and I could always hear her from the very end of the corridor when she got there. Klip klop klip klop! I have never been so happy to hear that sound.
She sat with me at my bed while the docs did more tests and scratched their heads, then they left us alone for a little. She lay on my bed with me for a little, a few sobbing moments, but at least I had her in my arms for a little bit. She sat back on her chair while we waited for the docs, and all of a sudden I had another bleed on the bed.
I was getting more accepting of these bleeds by now, whatever happens happens, at least I wasn’t alone now. But it hurt me to see how mortified it made my fiancé to have to see that blood. I had another huge bleed and that’s when they decided it was time for me to go to ICU.
Going to the ICU department was a mixed bag of feelings, firstly your now classified as really sick! Ha! But on the plus side, you’re now in the best room in the world if something is going to go wrong.
(just reposting this so its connected to my profile again after my last account was accidently deleted)
Hey all!
Stumbled across this website last night, was reading through the vent threads and know oh so well how many of the people there feel….. Brought a tear to my eyes.
I’m a 33 year old male from Australia, & I started pooping blood around November 2006 (I would’ve been 31 at the time), had the nice stomach cramps to go with it. So I went and saw my regular doctor, who sent me to a specialist. The specialist lined me up for my first colonoscopy.
After coming out of anesthesia, he said it looked a lot like Ulcerative Colitis and that I had to come back and see him again. When I went back, he explained the disease a little, but to this day we still wonder if he really told me how severe this kind of disease was, I was kinda under the impression that I carry on as usual with a few meds to settle it down.
I was put on prednisone, and sulfasalazine (Australian drugs may have slightly different names), and I kept getting worse. I moved onto mesalazine, and kept getting worse. Imuran was added in next, but still nothing was helping.
By this time, several months later, I had dropped about 20 kilo’s (think that’s about 40 pounds) from a weight of 90kilo’s that I started at. As time went by, general living was getting harder, every time I ate I was throwing up, and having to lay on my stomach for up to an hour before the pain subsided. I found the only thing keeping any weight on me was beer, and I could have a couple of heavy beers (like stouts) before I needed to throw up.
I also had another growing problem from disease, arthritis.. not sure how many of you had the fun of this affliction that comes with certain IBD’s, but I was getting it really well. 31 years old with the beginnings of chronic arthritis!!!! Can things get any more fun? There were days when I had to call in sick to work, not because of the crohns/colitus, but for the fact that my wrists were so sore with arthritis that I couldn’t actually turn the door knob….. oh what fun…
Lack of information led to my next downfall. I was getting really sick, really often now. I’ve never been a healthy eater, but I always was healthy. I thought of all the good food adverts on the TV, and decided to go for a full on high fiber diet. Fail :*( unknown to me was that high fiber food was shredding my stomach!
I went home early from work the Thursday, then stayed home again on the Friday. I was supposed to stay at my fiancés place on the Friday night, I remember calling her really upset and just telling her even though I was sick I still wanted to come stay. I was pretty sure something bad was coming, I just really wanted to spend time with her before it did.
Friday night, all day Saturday and Saturday night I spent in her bed, only getting up for small meals. About 6am Sunday morning I woke with a fever of 39.8 degrees Celsius, and on that many immuno suppressant drugs and prednisilone, there is no way I should’ve had any type of fever. So it was off to hospital for me, first time in my life.
It really was the first time I thought “holy sh*t, I am really sick”, and sitting in the emergency room really has the ability to hammer those thoughts home. My hospital didn’t have a huge emergency room, so therefore you get doctors that have a broad knowledge of medicine, but they all seem to specialize in their own fields. I don’t think the doctor I got had done a rectal exam in a long time, it was a straight-in finger jab that brought agonizing pain…. A little bit of respect for the patient with inflamed rectal area please…….
And so I was admitted..
The first few days were just spent trying to get me hydrated, and to get my fever down. Day after day on saline drips and broad spectrum antibiotics, and with my veins so damaged by the amount of prednisilone I’d been on, I was introduced to a new annoyance…. It was taking most nurses and doctors 3 or 4 attempts to get the canula’s in without blowing veins. My arms were black and blue with bruising, was awful. When they finally got the canula’s working, they had to tape it down so much so there was no movement whatsoever! LOL, they didn’t want to have to put new ones in.
I’ve often heard the saying about hospital “day 3 is the worst” and that rang true for me. I work up early in the morning and I was really scared for my life. I had the nurse pull the curtains closed around my bay so I could just curl up in a ball and sob. A couple of times other nurses came past and pulled them open trying to get some sunlight in, and I was really quite rude in the way I told them to keep it closed.
The middle of that morning, I had a nurse come in (lovely little lady she was, very kind to me) to start giving me enema’s so I could go have a colonoscopy done. She had administered the first one, and I had to run to the bathroom in pure white agony. It felt like razors getting put up there. I had to refuse the next two enema’s and said the doctors can make do with what they’ve got. I just wanted to be alone, I was so sad. My mother in law came in soon after, she just held my hand whilst I broke down again.
After the scope, the doc’s told me there was a heap of inflammation, but my body really wasn’t in the best state for surgery. They were going to spend the next bit of time trying to get my body a little healthier before any decisions were made, and so began my hospital stay…
More drugs were constantly added into, and removed from, my growing diet of pills. Every time something started to be looking up, something else would fall down. One drug, cyclosporine seemed to be really making a difference in my condition, but then I started feeling “not right” somehow, ends up it was nicely damaging my liver in a way the doctors had never seen before! Ha! Time to get off that drug!
Lol, every time things were getting better, then fell down, schnitzel was on the menu for me! I love my schnitzels! Sooo much, and every time it was available my body would breakdown and they’d take me off food again! I called it the schnitzel effect!
The night of Good Friday 2007 was one of the scariest nights of my life. I’ve had PR bleeds before, at some stage everyone with an IBD has seen blood in the toilet bowl, but what I saw this night was horrible. For the first time in about 12months, I felt like I was doing a “solid”, and sitting there, I was so proud, until I wiped (and as always checked the paper for blood).
My hand was cover in blood, I turned around to look into the bowel, and I have never seen so much blood in my life. I hit the emergency button for the nurse and waited with a massive dread inside of me. A young nurse came in, asked what the problem was then checked the bowel when I told her.
This is where my love for nurses grew, she was so calm and controlled. She just got me to sit down, she called for monitoring equipment and the doctors. She just kept me from breaking down. Whilst she was in there with me, I needed to go again (she didn’t care at all), and I could feel so much more coming out of me, and I could feel it was warm fresh blood. I was thinking it was the end.
I had the nurse get me my mobile phone, so I could make a call to my fiancé. It was about 11.30 at night “hey hon, you asleep? Feel like coming in? I really need you here at the moment”…. I desperately wanted there with me, I explained the situation and she was on her way. The nurses ended up moving me to my bed in the ward (somehow, even after so much blood loss, my BP was almost normal?? They were once again at a loss with what was going o with me..). my fiancé almost always wears heels, and I could always hear her from the very end of the corridor when she got there. Klip klop klip klop! I have never been so happy to hear that sound.
She sat with me at my bed while the docs did more tests and scratched their heads, then they left us alone for a little. She lay on my bed with me for a little, a few sobbing moments, but at least I had her in my arms for a little bit. She sat back on her chair while we waited for the docs, and all of a sudden I had another bleed on the bed.
I was getting more accepting of these bleeds by now, whatever happens happens, at least I wasn’t alone now. But it hurt me to see how mortified it made my fiancé to have to see that blood. I had another huge bleed and that’s when they decided it was time for me to go to ICU.
Going to the ICU department was a mixed bag of feelings, firstly your now classified as really sick! Ha! But on the plus side, you’re now in the best room in the world if something is going to go wrong.
