Hello my fellow survivors haha..
To start off, my name is Robert. I'm 17. I've crohn's for a couple of years but only diagnosed about a month or 2 ago. It's been a rough ride but hopefully I'm over the worst of it. I just really needed somewhere that I can talk about what's happening and people can understand. Unfortunately my experiences with crohn's is a great deal different from other stories and symptoms.
Anyways my "adventure" started about 2 years ago when I started feeling discomfort in my stomach. It was never bad enough that it effected my daily life so I kinda just put it in the back of my head. The discomfort did unfortunately start manifesting itself as pain, which again wasn't bad enough to warrant a call to the doc but I did mention something to my doctor the next time I had visited him. He mentioned that it was probably an ulcer forming due to the amount of energy drinks I was consuming (2-3 a day), so he perscribed some antacid pills and sent me on my way. The pain didn't go away yet was still not bad enough that it warranted imediate attention so a couple months later I brought it up again. He was covinced I hadn't taken the antacid pills so he perscribed more and advised me to stop drinking energy drinks. Again nothing. Upon returning and some convincing he decided to amuse me with an h. Pylori test which he said may also cause related symptoms which turned out to be very high. I was sent off with a string of antibiotics this somewhat made me feel better but didn't exactly sure the problem. This back and forth went on for about a year and a half and only ended up getting worse from there.
One day in the shower I noticed I had a lump in my right but cheek. I new right then and there something was very wrong. I imediately called my doctor and made an appointment. After some looking over he said the area looked irritated and suggested I drink some prune juice. A week later I came to my senses and saw another doctor. This doctor noticed that something was definitely growing that shouldn't be and really wanted me to see a surgeon but hospital rules said that he was required to prescribe some supositories and suggest a diet for atleast 2 weeks first. Unfortunately my butt cheek had other plans. That weekend the pain in my rear had gotten so bad I had decided to make the trip to the emergency room. While there a surgeon had determined I had an abcess which was then lanced, packed, and medicated with antibiotics and pain meds. That night it only got worse, the next morning I returned to the emergency room in even more pain then before. While waiting for a surgeon to look me over my infection quickly spread to my blood where my temp shot up to about 103 and I started turning blue (according to my mom haha I was so doped up on morphine and focused on the horrible pain I don't remember much). I was then rushed top surgery where they cleaned out multiple other abcesses and did a more thorough job of cleaning and putting me back together. I then spent the next couple of days in the hospital hooked up to IV antibiotics to make sure that I was getting better, which I did, for the most part.
I started getting better after this. Or atleast I think I did. I think my pain/discomfort was just overshadowed by the whole butt cheek ordeal. However it never completely went away. I was left with quite a good sized fistulate(sp?). For those of you who don't know what that is, it's a small canal type thing that leads from your rectum to the outside, like an extra butthole. It wasn't big enough for fecal matter to exit but gas had no trouble making it's way through. This wouldn,t have actually been such a big deal if it didn't expell so much puss. This unfortunately haunted me for months while I waited for it to close. It got so bad at times it would leak through the gause I had taped up and leak through my pants at school. I attempted to solve this problem with a surgery to remove it which didn't work. It did however move it closer to my rectum and make it small enough that the puss evaporates and goes away before it can reach my pants and make a stain.
This is where the crohn's really kicked in and started making itself known. I switched doctors once again because I figured that it was time I stopped going to the pediactric department and started going to the teen clinic and it couldn't have been a better time anyways because I needed a doctor that knew what they were doing. This was the best medical decision I've made to date. She is what really got me on track to diagnosing my disease and getting me better.
The discomfort/pain in my stomach had started to become debilitating soon after this procedure. I talked to my doctor and she right away said that this was something out of her league and recommended I see a GI specialist. The pain was so bad that I was forced to take norco (double strength vicodin) just to do my daily activities like goto school. The soonest appointment available was about a week away and she knew that there were things that the GI would want like a CT scan, some blood work, and an ultra sound to rule out causes like gaul stones and infections.
By this time the pain was effecting me even while I was on the norco and I had manifested a different pain in my lower abdomin. This was a sharp pain that mostly appeared when I had gas or when I had a full bladder. After visiting the GI he said that he was about 98% sure that I had crohn's because of all the extensive inflamation in my illieum and small intestine but that he really wanted to do a colonoscopy and take a couple of samples to be 100% sure but was sure enough to prescribe me prednisone/asacol/mercaptopurine. The sharp pain in my lower abdomin quickly got better. But as far as the slow waxing/waning pain halfway between my belly button and chest nothing changed.
About a week later and the day before my colonoscopy. I was rushed to the emergency room by ambulance because of severe abdominal pain (under my belly button). The pain was the worst pain I had ever felt in my life and was so bad that no amount of morphine or delotted could dull it. They had me on half hour shots of phentynol(sp?). After a CT scan they determined that the cause of my horrible pain was a perforated intestine. I was then rushed into surgery where the cut out aproximately 13cm of my illieum. I got incredibly lucky that the prednisone had actually reduced a significant amount of inflamation. Enough in fact that they were able to attach good intestine to good intestine which according to the previous CT scan would not have been possible and they would have been forced to attach my intestine to a bag while they tried to get my intestines healed enough to put me back together.
I am currently still healing from that surgery but am doing quite well thankfully. I got my staples taken out about 5 days ago and am trying to get my body back into my normal daily functions and habits. Everything is going good except for 2 problems that I am still trying to get under control which is that I can't sleep and I have the most horrible constipation I have ever had. I stopped eating fiber after reading a many diet suggestions against it but have now decided that that is completely redciulous and that anything that can happen to me from eating fiber can't be worse than this horrrible constipation. I also just bought a costco bottle of benadryl which should solve my sleep problems.
So that's my crohn's story, and to anyone that actually read all that I thank you. It's nice to know there are people out there that understand my pain and actually sympathize.
Thanks,
Robert
To start off, my name is Robert. I'm 17. I've crohn's for a couple of years but only diagnosed about a month or 2 ago. It's been a rough ride but hopefully I'm over the worst of it. I just really needed somewhere that I can talk about what's happening and people can understand. Unfortunately my experiences with crohn's is a great deal different from other stories and symptoms.
Anyways my "adventure" started about 2 years ago when I started feeling discomfort in my stomach. It was never bad enough that it effected my daily life so I kinda just put it in the back of my head. The discomfort did unfortunately start manifesting itself as pain, which again wasn't bad enough to warrant a call to the doc but I did mention something to my doctor the next time I had visited him. He mentioned that it was probably an ulcer forming due to the amount of energy drinks I was consuming (2-3 a day), so he perscribed some antacid pills and sent me on my way. The pain didn't go away yet was still not bad enough that it warranted imediate attention so a couple months later I brought it up again. He was covinced I hadn't taken the antacid pills so he perscribed more and advised me to stop drinking energy drinks. Again nothing. Upon returning and some convincing he decided to amuse me with an h. Pylori test which he said may also cause related symptoms which turned out to be very high. I was sent off with a string of antibiotics this somewhat made me feel better but didn't exactly sure the problem. This back and forth went on for about a year and a half and only ended up getting worse from there.
One day in the shower I noticed I had a lump in my right but cheek. I new right then and there something was very wrong. I imediately called my doctor and made an appointment. After some looking over he said the area looked irritated and suggested I drink some prune juice. A week later I came to my senses and saw another doctor. This doctor noticed that something was definitely growing that shouldn't be and really wanted me to see a surgeon but hospital rules said that he was required to prescribe some supositories and suggest a diet for atleast 2 weeks first. Unfortunately my butt cheek had other plans. That weekend the pain in my rear had gotten so bad I had decided to make the trip to the emergency room. While there a surgeon had determined I had an abcess which was then lanced, packed, and medicated with antibiotics and pain meds. That night it only got worse, the next morning I returned to the emergency room in even more pain then before. While waiting for a surgeon to look me over my infection quickly spread to my blood where my temp shot up to about 103 and I started turning blue (according to my mom haha I was so doped up on morphine and focused on the horrible pain I don't remember much). I was then rushed top surgery where they cleaned out multiple other abcesses and did a more thorough job of cleaning and putting me back together. I then spent the next couple of days in the hospital hooked up to IV antibiotics to make sure that I was getting better, which I did, for the most part.
I started getting better after this. Or atleast I think I did. I think my pain/discomfort was just overshadowed by the whole butt cheek ordeal. However it never completely went away. I was left with quite a good sized fistulate(sp?). For those of you who don't know what that is, it's a small canal type thing that leads from your rectum to the outside, like an extra butthole. It wasn't big enough for fecal matter to exit but gas had no trouble making it's way through. This wouldn,t have actually been such a big deal if it didn't expell so much puss. This unfortunately haunted me for months while I waited for it to close. It got so bad at times it would leak through the gause I had taped up and leak through my pants at school. I attempted to solve this problem with a surgery to remove it which didn't work. It did however move it closer to my rectum and make it small enough that the puss evaporates and goes away before it can reach my pants and make a stain.
This is where the crohn's really kicked in and started making itself known. I switched doctors once again because I figured that it was time I stopped going to the pediactric department and started going to the teen clinic and it couldn't have been a better time anyways because I needed a doctor that knew what they were doing. This was the best medical decision I've made to date. She is what really got me on track to diagnosing my disease and getting me better.
The discomfort/pain in my stomach had started to become debilitating soon after this procedure. I talked to my doctor and she right away said that this was something out of her league and recommended I see a GI specialist. The pain was so bad that I was forced to take norco (double strength vicodin) just to do my daily activities like goto school. The soonest appointment available was about a week away and she knew that there were things that the GI would want like a CT scan, some blood work, and an ultra sound to rule out causes like gaul stones and infections.
By this time the pain was effecting me even while I was on the norco and I had manifested a different pain in my lower abdomin. This was a sharp pain that mostly appeared when I had gas or when I had a full bladder. After visiting the GI he said that he was about 98% sure that I had crohn's because of all the extensive inflamation in my illieum and small intestine but that he really wanted to do a colonoscopy and take a couple of samples to be 100% sure but was sure enough to prescribe me prednisone/asacol/mercaptopurine. The sharp pain in my lower abdomin quickly got better. But as far as the slow waxing/waning pain halfway between my belly button and chest nothing changed.
About a week later and the day before my colonoscopy. I was rushed to the emergency room by ambulance because of severe abdominal pain (under my belly button). The pain was the worst pain I had ever felt in my life and was so bad that no amount of morphine or delotted could dull it. They had me on half hour shots of phentynol(sp?). After a CT scan they determined that the cause of my horrible pain was a perforated intestine. I was then rushed into surgery where the cut out aproximately 13cm of my illieum. I got incredibly lucky that the prednisone had actually reduced a significant amount of inflamation. Enough in fact that they were able to attach good intestine to good intestine which according to the previous CT scan would not have been possible and they would have been forced to attach my intestine to a bag while they tried to get my intestines healed enough to put me back together.
I am currently still healing from that surgery but am doing quite well thankfully. I got my staples taken out about 5 days ago and am trying to get my body back into my normal daily functions and habits. Everything is going good except for 2 problems that I am still trying to get under control which is that I can't sleep and I have the most horrible constipation I have ever had. I stopped eating fiber after reading a many diet suggestions against it but have now decided that that is completely redciulous and that anything that can happen to me from eating fiber can't be worse than this horrrible constipation. I also just bought a costco bottle of benadryl which should solve my sleep problems.
So that's my crohn's story, and to anyone that actually read all that I thank you. It's nice to know there are people out there that understand my pain and actually sympathize.
Thanks,
Robert
