Hi All!
As the title states, I have recently been diagnosed with CD. I truly appreciate anyone that takes the time to read this post! It is my first time doing anything like this, and I honestly need to get everything out of me....so I apologize if it's a little lengthy!
It has been a bit under a year since I first started having symptoms, (mostly stomach pain, and constipation, rarely diarrhea, but sometimes whole foods in the BM's *yuck*) so I'm thankful that I was diagnosed this early. Last summer, I was having terrible pain in my stomach and decided to go to the ER. After some blood work, they noticed that my wbc was high, and ordered a CT scan. I'm not exactly sure what the scan showed, but they sent me home with a diagnoses of "possibly IBS, or maybe a stomach bug?" I was fine after a few days and thought nothing of it. Then, towards the middle of Sept, I returned to the ER with the same symptoms, and the same outcome from the tests....but they decided to refer me to a GI specialist this time! Thanks! He set up a colonoscopy and endoscopy fairly soon after that, and told me that he took a couple of biopsies, but it looked like early signs of Crohn's. After about a week, he called and said that he wasn't sure and needed another opinion. He did this two more times, and then finally said he wanted to do an MRI. He never called me with a date, so I let it go.
Now, let me stop and tell you that I am 22 years old (female) and I suffer from severe anxiety and depression, and have since I was 14 (although the depression most likely started earlier). Well, because of this, I haven't kept up with doctors appointments the way that I should, and when I do, I just let them say what they need to, don't ask questions, and go home. It is hard for me to leave the house most days. I've been very neglectful to my health over the years, and am very ashamed of this, but am working every day to make sure that I keep up with this now.
Anyways, I didn't really take this seriously because I thought that, after I was fine for awhile, and the fact that the Doc didn't have an answer for me, meant that I was going to be okay. I was.....up until a couple of weeks ago. I had to return to the hospital, again with the same symptoms, except a little bit of pain towards the bottom right side of my stomach (when before it was mostly located in the front [above and below the belly button]). This time the ER doctor actually explained things to me. First, she said that the CT showed that I had inflammation in my (terminal ileum...?) Then she told me that I did, in fact, have CD. They admitted me that night with IV antibiotics because my WBC was extremely high. They also had me taking Prednisone, Flagyl, Asacol, and Dilauded for the pain.
When I met the hospitalist the next day, he told me that what was happening to me didn't really resemble CD. Apparently, every time I had been seen at the ER, the inflammation was in the same place, which he said was not the norm. Also, by that time, I was off of the pain meds and my symptoms were pretty much gone...which shocked him! This gave me hope, because all day I was thinking that I had been diagnosed with this disease, when, come to find out....that wasn't the case! They sent me home, and I made an emergency appt with my GI Spec a few days later.
Well, after about 4 minutes in the Doctors office, I had my legitimate diagnoses of Crohn's Disease. After all of that. I had this thought before that day, that if I did have this disease....I would be fine. It's no big deal, I can make it work. As soon as he said the words to me...it was real, and I was thinking the worst. I'm honestly terrified. I didn't really know what questions to ask, I was pretty much in a daze. He told me that it was located in my small bowel....which means that, if they have to do resections in the future, this is very dangerous. He said that there isn't enough in there to keep removing it, so the main goal is preventing that. That's scary. He then said that he was planning on prescribing this medication (he referred to it as Chemo for Crohn's, but I can't remember the actual name) because it is very effective, but has major "possible" side effects, like Pancreatitis, and Cancer. This is also very scary. Next, he told me to grind my own flax seed, and eat 2 tbsp a day, and take 2 probiotics every day, and prescribed me with Prednisone again because I had run out of the ones that I received at the hospital. I was sent to do some blood work a couple of days ago before he gives me the new medication...I'm not sure exactly what he wants to check, but I'm still currently taking the Asacol from before.
Because of my lack of medical responsibility, I don't know what kind of questions to ask, and because of my anxiety, it's hard for me to ask the ones that I do have. The only thing I got out was..."What should I eat?" in which he replied "Keep it dull, bland and boring. I don't want to get into food this visit, because this is enough for you to worry about." I have to see him once a month for a very long time.
I don't have a whole lot of people that I can talk to about this, and I don't know anybody that suffers with this. I was hoping to maybe get a little bit of help from the people in this forum with some of the things that I should talk to my doctor about...questions and concerns, and how to bring them up when I'm in there. I want to know about certain things, like what the colonoscopy showed, and the results of the biopsies, but I'm very embarrassed to ask. I know that I shouldn't be, but this is pretty much all new to me.
Again, I appreciate it if anybody stuck through to the end of this....well...book I'll appreciate it even more if you reply with anything...even just a smile to help me look on the bright side in this terrifying time.
--KC
As the title states, I have recently been diagnosed with CD. I truly appreciate anyone that takes the time to read this post! It is my first time doing anything like this, and I honestly need to get everything out of me....so I apologize if it's a little lengthy!
It has been a bit under a year since I first started having symptoms, (mostly stomach pain, and constipation, rarely diarrhea, but sometimes whole foods in the BM's *yuck*) so I'm thankful that I was diagnosed this early. Last summer, I was having terrible pain in my stomach and decided to go to the ER. After some blood work, they noticed that my wbc was high, and ordered a CT scan. I'm not exactly sure what the scan showed, but they sent me home with a diagnoses of "possibly IBS, or maybe a stomach bug?" I was fine after a few days and thought nothing of it. Then, towards the middle of Sept, I returned to the ER with the same symptoms, and the same outcome from the tests....but they decided to refer me to a GI specialist this time! Thanks! He set up a colonoscopy and endoscopy fairly soon after that, and told me that he took a couple of biopsies, but it looked like early signs of Crohn's. After about a week, he called and said that he wasn't sure and needed another opinion. He did this two more times, and then finally said he wanted to do an MRI. He never called me with a date, so I let it go.
Now, let me stop and tell you that I am 22 years old (female) and I suffer from severe anxiety and depression, and have since I was 14 (although the depression most likely started earlier). Well, because of this, I haven't kept up with doctors appointments the way that I should, and when I do, I just let them say what they need to, don't ask questions, and go home. It is hard for me to leave the house most days. I've been very neglectful to my health over the years, and am very ashamed of this, but am working every day to make sure that I keep up with this now.
Anyways, I didn't really take this seriously because I thought that, after I was fine for awhile, and the fact that the Doc didn't have an answer for me, meant that I was going to be okay. I was.....up until a couple of weeks ago. I had to return to the hospital, again with the same symptoms, except a little bit of pain towards the bottom right side of my stomach (when before it was mostly located in the front [above and below the belly button]). This time the ER doctor actually explained things to me. First, she said that the CT showed that I had inflammation in my (terminal ileum...?) Then she told me that I did, in fact, have CD. They admitted me that night with IV antibiotics because my WBC was extremely high. They also had me taking Prednisone, Flagyl, Asacol, and Dilauded for the pain.
When I met the hospitalist the next day, he told me that what was happening to me didn't really resemble CD. Apparently, every time I had been seen at the ER, the inflammation was in the same place, which he said was not the norm. Also, by that time, I was off of the pain meds and my symptoms were pretty much gone...which shocked him! This gave me hope, because all day I was thinking that I had been diagnosed with this disease, when, come to find out....that wasn't the case! They sent me home, and I made an emergency appt with my GI Spec a few days later.
Well, after about 4 minutes in the Doctors office, I had my legitimate diagnoses of Crohn's Disease. After all of that. I had this thought before that day, that if I did have this disease....I would be fine. It's no big deal, I can make it work. As soon as he said the words to me...it was real, and I was thinking the worst. I'm honestly terrified. I didn't really know what questions to ask, I was pretty much in a daze. He told me that it was located in my small bowel....which means that, if they have to do resections in the future, this is very dangerous. He said that there isn't enough in there to keep removing it, so the main goal is preventing that. That's scary. He then said that he was planning on prescribing this medication (he referred to it as Chemo for Crohn's, but I can't remember the actual name) because it is very effective, but has major "possible" side effects, like Pancreatitis, and Cancer. This is also very scary. Next, he told me to grind my own flax seed, and eat 2 tbsp a day, and take 2 probiotics every day, and prescribed me with Prednisone again because I had run out of the ones that I received at the hospital. I was sent to do some blood work a couple of days ago before he gives me the new medication...I'm not sure exactly what he wants to check, but I'm still currently taking the Asacol from before.
Because of my lack of medical responsibility, I don't know what kind of questions to ask, and because of my anxiety, it's hard for me to ask the ones that I do have. The only thing I got out was..."What should I eat?" in which he replied "Keep it dull, bland and boring. I don't want to get into food this visit, because this is enough for you to worry about." I have to see him once a month for a very long time.
I don't have a whole lot of people that I can talk to about this, and I don't know anybody that suffers with this. I was hoping to maybe get a little bit of help from the people in this forum with some of the things that I should talk to my doctor about...questions and concerns, and how to bring them up when I'm in there. I want to know about certain things, like what the colonoscopy showed, and the results of the biopsies, but I'm very embarrassed to ask. I know that I shouldn't be, but this is pretty much all new to me.
Again, I appreciate it if anybody stuck through to the end of this....well...book I'll appreciate it even more if you reply with anything...even just a smile to help me look on the bright side in this terrifying time.
--KC