- Joined
- Sep 22, 2008
- Messages
- 785
My fellow Crohnies,
Some of you may or may not of noticed my absence from the boards since October. Some of you know how I've been flaring the past nine months with our disease, and recently things had headed for the worst. I was down to nearly eighty eighty pounds late September and my Doctors told me if I kept going down this path that I wouldn't be here in six months. It's a lot for a seventeen year old to take in especially after all of the pain and steroids and medications I've gone through only to have no results.
It all culminated in October. At the beginning I had kidney stones which some of you are aware of, and I thought, no big deal I have pain meds, I'll pass them. Don't get me wrong, kidney stone pain is one of the worst pains I've ever experienced, but it wasn't life threatening, or so I thought. Really, it was a sign of my body trying to tell me worse things were to come as kidney stones can be a complication of crohn's disease.
So I took the pain meds and expected to get better, and I did eventually pass them. But I was getting worse. I was on a low residue diet and on prednisone and prilosec, but every time I ate, I still had a burning pain inside, like I was on fire. Couple that with not wanting to eat and you had a girl pale as a ghost who looked emaciated.
It wasn't long before I landed myself in the hospital again, this time for nearly a week with intense pain only to be relieved by morphine and dilauded. I was very anemic, so much so that I required a blood transfusion and an iron injection. My doctors were also concerned with the inflammation and said I really needed to be on an aggressive treatment; biologics. Biologics at the time terrified me, but surgery and death terrified me more. My doctors provided an excellent case, addressing all of my fears and then some. I knew it was finally time to give in and try the treatment because I couldn't go on like this and the implications of not being on treatment were far worse than the risk of taking the treatment.
I kept praying to God for an answer, for help since I know that I can't do this alone. He answered my prayers and gave me my family as a shoulder to lean on, family who prior to this event I wasn't close with, but they were there, rooting me on, telling me to fight with all I had. I'm a tough person by nature, Crohn's disease is not the first disease to try and knock me down. I had Kawasaki's disease when I was a young child. But now, I had been beaten down for nine months and I'll be honest, at times my faith was strained. When it was, I'd go to Church (When I could get out of bed or wasn't in the hospital, when I was, the Priest would come see me and we'd pray) I could feel that love and that warmth as goosebumps ran along my arms as I would profess my faith as we always do before Communion. It wasn't cold or warm in the Church, it was the Holy Spirit letting me know God cared and he wasn't turning his back on me. Things might have looked hopeless, but everyone faces adversity and it's how you deal with that adversity that decides how you grow.
So, I accepted the treatment, and started my Humira injections and stayed on the pain killers since I was still having agonizing pain. I needed them just to get through my day and often times I wouldn't eat until I had taken them because I didn't want to be in pain. It was a dark time for me, I felt pathetic and beaten down. I was losing hope. But Humira started to kick in after a few days and I started to feel a bit better. I had a good few weeks, I was able to go celebrate my eighteenth birthday with my family at our favorite Italian restaurant because I'm Italian and I love Italian cuisine. My sister in law had made me an amazing cake from scratch and I couldn't have asked for a better birthday. Things were looking up, or so I thought.
I wasn't long before I landed in the hospital again and this time with more agonizing pain. I was admitted in the hospital and given even more narcotics to control it while they found that I had a partial obstruction. I was put on liquids and more prednisone in the hopes to clear it up. They also found an impacted stool, but they were more concerned with the obstruction and once it was gone and I was on liquids, they let me out. A day later, my parents had to call an ambulance because yet again I was in agonizing pain and two percocet pills wasn't nearly even enough to affect the pain at all. They were allowed to give me 2 mg of morphine, but it only barely dulled the pain. When I got into the emergency room they didn't want to give me any narcotics because my colon was impacted and it would just make it worse. But my colon was spasming because the previous day I had tried enemas and even colon prep so that I could relieve the pain and constipation.
So the doctor gave me an antispasmodic, hoping it would help. I had to wait thirty minutes of agonizing pain and screaming and crying before he deduced that it didn't. He gave me another shot of something that I can't remember in my hip that was supposed to work and it didn't either, it just hurt like hell and burned on top of my pain that only seemed to persist and get worse. Then he had a nurse give me a subcutaneous shot of morphine in the hopes that it would work but not affect my GI tract. It had the opposite affect and made my pain worse. The needle going in felt sharp and stabbing like my pain, and then the pain that ensued after it was done? It felt like my arm was on fire. I couldn't help but scream at her when she tried to wipe it with an alcohol wipe, it hurt that bad from not only the alcohol, but just touching it was just as painful. I'm usually very polite with my nurses and medical team, but I couldn't help myself, honestly.
So then, they offered a sedative. Another shot in the hip. I told them no. I felt bad because by then I had been in screaming pain for hours, writhing around and I knew it was traumatizing my parents. They tried to talk me into it and by the time I said yes, they finally came by with a sedative to be injected into my IV. I was out for eleven hours before I came to. I was in a room with a woman who had UC. She had to have emergency surgery and had a colostomy. How do I know? She wouldn't stop talking about it and she actually broke her bag. The room smelled bad and it wouldn't of bothered me except she cursed all the time, the nursing staff was bad at cleaning it up and her doctors came in yelling all the while I was so nauseous I wanted to throw up. I got moved shortly only to be roomed with an older woman who was in pain, moaning and belching and throwing up all the time, which also made me sick. Since I couldn't get a private room, my Mom took me in a wheel chair to the Chapel, and we stayed in there for several hours where it was peaceful.
I finally felt a strange sense of peace, you know how like you've been away on a trip for so long and you come home and everything is right and calm? It was like that except much more intense. It was at this point I wanted a manual bowel evacuation to be done, but no one wanted to do it because there was a risk involved of stopping someone's heart if you damaged a nerve in your rectum. They said if it was going to be done that I would have to do it myself. Only problem was, I didn't know what I was doing, and no one talked me through it or wanted to. So basically I was in the hospital only getting fluids and not anything else. Not even an enema. They just kept telling me to drink the colon prep, which I had for hours and it wasn't working, so I took matters into my own hands.
They finally did manage to get me a private room and by the time they wheeled me in there, I read up on how to do an evacuation and when I got to my bathroom, I did it and finally relieved some of the pain and pressure. I had no issues going after that because the colon prep that I had drank finally kicked in. It was then I decided I was going home tomorrow morning because I wasn't getting any treatment here. I was the one that fixed my own problem and I could have done it at home and under less stressful conditions.
They let me out the next day on miralax, which I'm to take everyday until I have diarrhea and then back off to tailor it to my bowel habits. They said I could eat what I wanted, but no way was I going to land myself back here! I went on liquids for a few days, and then softs and solids because I had to teach my bowels how to work again and I read not eating could be more harmful than beneficial. Plus, I loved food, and having not eaten in five days was taking a toll on me.
Now that I was home and doing a little well, I had to drop out of all of my university classes on medical leave because it was impossible for me to catch up. I have to take online virtual classes and I have to rush so I can catch up and still graduate on time. If I don't, they won't let me walk. Even though I was getting better, I was still having feelings of being beaten down and being a freak. I had twelve holes in my right arm alone from all of my sticks, six in my left, two in my hip, and one in the back of my arm, and two collapsed veins. (One of which had potassium in the IV, which burned my whole arm like it was on FIRE. WAY worse than the shots.)
Some of you may or may not of noticed my absence from the boards since October. Some of you know how I've been flaring the past nine months with our disease, and recently things had headed for the worst. I was down to nearly eighty eighty pounds late September and my Doctors told me if I kept going down this path that I wouldn't be here in six months. It's a lot for a seventeen year old to take in especially after all of the pain and steroids and medications I've gone through only to have no results.
It all culminated in October. At the beginning I had kidney stones which some of you are aware of, and I thought, no big deal I have pain meds, I'll pass them. Don't get me wrong, kidney stone pain is one of the worst pains I've ever experienced, but it wasn't life threatening, or so I thought. Really, it was a sign of my body trying to tell me worse things were to come as kidney stones can be a complication of crohn's disease.
So I took the pain meds and expected to get better, and I did eventually pass them. But I was getting worse. I was on a low residue diet and on prednisone and prilosec, but every time I ate, I still had a burning pain inside, like I was on fire. Couple that with not wanting to eat and you had a girl pale as a ghost who looked emaciated.
It wasn't long before I landed myself in the hospital again, this time for nearly a week with intense pain only to be relieved by morphine and dilauded. I was very anemic, so much so that I required a blood transfusion and an iron injection. My doctors were also concerned with the inflammation and said I really needed to be on an aggressive treatment; biologics. Biologics at the time terrified me, but surgery and death terrified me more. My doctors provided an excellent case, addressing all of my fears and then some. I knew it was finally time to give in and try the treatment because I couldn't go on like this and the implications of not being on treatment were far worse than the risk of taking the treatment.
I kept praying to God for an answer, for help since I know that I can't do this alone. He answered my prayers and gave me my family as a shoulder to lean on, family who prior to this event I wasn't close with, but they were there, rooting me on, telling me to fight with all I had. I'm a tough person by nature, Crohn's disease is not the first disease to try and knock me down. I had Kawasaki's disease when I was a young child. But now, I had been beaten down for nine months and I'll be honest, at times my faith was strained. When it was, I'd go to Church (When I could get out of bed or wasn't in the hospital, when I was, the Priest would come see me and we'd pray) I could feel that love and that warmth as goosebumps ran along my arms as I would profess my faith as we always do before Communion. It wasn't cold or warm in the Church, it was the Holy Spirit letting me know God cared and he wasn't turning his back on me. Things might have looked hopeless, but everyone faces adversity and it's how you deal with that adversity that decides how you grow.
So, I accepted the treatment, and started my Humira injections and stayed on the pain killers since I was still having agonizing pain. I needed them just to get through my day and often times I wouldn't eat until I had taken them because I didn't want to be in pain. It was a dark time for me, I felt pathetic and beaten down. I was losing hope. But Humira started to kick in after a few days and I started to feel a bit better. I had a good few weeks, I was able to go celebrate my eighteenth birthday with my family at our favorite Italian restaurant because I'm Italian and I love Italian cuisine. My sister in law had made me an amazing cake from scratch and I couldn't have asked for a better birthday. Things were looking up, or so I thought.
I wasn't long before I landed in the hospital again and this time with more agonizing pain. I was admitted in the hospital and given even more narcotics to control it while they found that I had a partial obstruction. I was put on liquids and more prednisone in the hopes to clear it up. They also found an impacted stool, but they were more concerned with the obstruction and once it was gone and I was on liquids, they let me out. A day later, my parents had to call an ambulance because yet again I was in agonizing pain and two percocet pills wasn't nearly even enough to affect the pain at all. They were allowed to give me 2 mg of morphine, but it only barely dulled the pain. When I got into the emergency room they didn't want to give me any narcotics because my colon was impacted and it would just make it worse. But my colon was spasming because the previous day I had tried enemas and even colon prep so that I could relieve the pain and constipation.
So the doctor gave me an antispasmodic, hoping it would help. I had to wait thirty minutes of agonizing pain and screaming and crying before he deduced that it didn't. He gave me another shot of something that I can't remember in my hip that was supposed to work and it didn't either, it just hurt like hell and burned on top of my pain that only seemed to persist and get worse. Then he had a nurse give me a subcutaneous shot of morphine in the hopes that it would work but not affect my GI tract. It had the opposite affect and made my pain worse. The needle going in felt sharp and stabbing like my pain, and then the pain that ensued after it was done? It felt like my arm was on fire. I couldn't help but scream at her when she tried to wipe it with an alcohol wipe, it hurt that bad from not only the alcohol, but just touching it was just as painful. I'm usually very polite with my nurses and medical team, but I couldn't help myself, honestly.
So then, they offered a sedative. Another shot in the hip. I told them no. I felt bad because by then I had been in screaming pain for hours, writhing around and I knew it was traumatizing my parents. They tried to talk me into it and by the time I said yes, they finally came by with a sedative to be injected into my IV. I was out for eleven hours before I came to. I was in a room with a woman who had UC. She had to have emergency surgery and had a colostomy. How do I know? She wouldn't stop talking about it and she actually broke her bag. The room smelled bad and it wouldn't of bothered me except she cursed all the time, the nursing staff was bad at cleaning it up and her doctors came in yelling all the while I was so nauseous I wanted to throw up. I got moved shortly only to be roomed with an older woman who was in pain, moaning and belching and throwing up all the time, which also made me sick. Since I couldn't get a private room, my Mom took me in a wheel chair to the Chapel, and we stayed in there for several hours where it was peaceful.
I finally felt a strange sense of peace, you know how like you've been away on a trip for so long and you come home and everything is right and calm? It was like that except much more intense. It was at this point I wanted a manual bowel evacuation to be done, but no one wanted to do it because there was a risk involved of stopping someone's heart if you damaged a nerve in your rectum. They said if it was going to be done that I would have to do it myself. Only problem was, I didn't know what I was doing, and no one talked me through it or wanted to. So basically I was in the hospital only getting fluids and not anything else. Not even an enema. They just kept telling me to drink the colon prep, which I had for hours and it wasn't working, so I took matters into my own hands.
They finally did manage to get me a private room and by the time they wheeled me in there, I read up on how to do an evacuation and when I got to my bathroom, I did it and finally relieved some of the pain and pressure. I had no issues going after that because the colon prep that I had drank finally kicked in. It was then I decided I was going home tomorrow morning because I wasn't getting any treatment here. I was the one that fixed my own problem and I could have done it at home and under less stressful conditions.
They let me out the next day on miralax, which I'm to take everyday until I have diarrhea and then back off to tailor it to my bowel habits. They said I could eat what I wanted, but no way was I going to land myself back here! I went on liquids for a few days, and then softs and solids because I had to teach my bowels how to work again and I read not eating could be more harmful than beneficial. Plus, I loved food, and having not eaten in five days was taking a toll on me.
Now that I was home and doing a little well, I had to drop out of all of my university classes on medical leave because it was impossible for me to catch up. I have to take online virtual classes and I have to rush so I can catch up and still graduate on time. If I don't, they won't let me walk. Even though I was getting better, I was still having feelings of being beaten down and being a freak. I had twelve holes in my right arm alone from all of my sticks, six in my left, two in my hip, and one in the back of my arm, and two collapsed veins. (One of which had potassium in the IV, which burned my whole arm like it was on FIRE. WAY worse than the shots.)
