- Joined
- Dec 2, 2010
- Messages
- 61
Hello!
My name's Anna, I'm 23 years old, and was diagnosed with Crohn's and Celiac disease when I was 16. The diagnoses came after a perianal abscess was removed and a scope was performed my junior year of high school. I spent about six months each of my junior and senior years being tutored at home because of flares/abscess issues. For my first two years of college, I went to a university about 2 hours away from home and both spring semester had abscesses pop up. These led to hospitalizations, surgeries, PICC lines, and having to do medical withdrawals from school. After the second time, I transferred to a school close to home where I could commute to school and found a low-stress part-time job at a chiropractor's office. Fast forward to May 2010 and I FINALLY graduated (although I have yet to find my first "big kid job" haha).
After numerous problems/flare ups with the abscess wound (which we later found was from a fistula) I started Remicade almost 3 years ago. My pediatric GI was extremely apprehensive to start Remicade so I was previously on 6MP, Pred, and rotating between Cipro and Flagyl monthly for a year. I have had GREAT results with Remicade, minus the random illnesses you don't normally see in a young girl, mumps and shingles = not fun haha. I get the Remi every 7 weeks, do monthly B12 injections, and take a daily probiotic.
Since I started Remi, I had no flares or even pain in the fistula area until last winter. Last November an MRI showed a small abscess in the area where the previous abscesses had been but when my surgeon went in, he was unable to find it and told me it would probably go away with a round of everyone's favorites, Cipro and Flagyl. Then in February I ended up in the ER with horrible pain in the same area. Isn't it funny how after a few times, you get a certain pain and it's EXACTLY how you remember it and you KNOW what it is? This time around the surgeon was able to find the abscess, which was much larger than anticipated, and inserted a seton into the fistula. I saw the surgeon monthly until August when he told me that the fistula was taking longer than he expected to heal and didn't want to see me for 6 months.
In the meantime, I'm from Pittsburgh but had been living in New York with a friend job hunting. At the beginning of October I had that all too familiar feeling around the seton area. So, I drove home and my GI put me on a 2 week dose of Cipro and Flagyl. Day 13 of the meds I started to have excruciating pain in the perianal area, running a fever, and was getting a lot of bleeding/discharge from the area. Both the GI nurse and surgeon's nurse told me to head to the ER. They admitted me, did an MRI the next morning, drained the abscess and put in another seton, directly next to my first one the following morning. Had another 2 week round of Cipro and Flagy, along with Oxycodone and lots of sitz baths. Saw both Doctors about 3 weeks ago and since I had still been having a lot of pain and the surgeon could feel inflammation, did another 2 weeks of the meds. I finished them last Thursday, and after having a little bit of relief from the pain during those 2 weeks, I can slowly feel more pain going on in that area again. I'm not running a fever or anything so I'm trying to hope for the best that we're not getting any more inflammation in there or something. It just seems like it's taking me so much longer to bounce back to my normal self this time than in February.
It just seems that this is a merry go round of the same things over and over again. Throughout the years it has definitely caused some road blocks, forced me to take some detours, and I am known for always putting on a smile when I'm out and about. Lately though I'm finding it harder to paste on that smile. I'm just ready to get my adult life started and once again Crohn's has stalled that process. Sitting for an hour or two is difficult at this point so I really have no drive to even begin to start applying again for a job that would require me to be in an office all day. Luckily, my parents are extremely supportive and helpful and I'm able to take this time to just let myself heal. I am truly thankful that the intestinal pain side of Crohn's is minimal for me and I "only" have to deal with these ridiculous fistula's and abscesses though. I'm also thankful to find a site like this because no matter how much friends and family think they understand what you're going through, I feel like only people who have dealt with Crohn's can understand. So I realize this is ridiculously long but it did feel good to just tell my story without having a Doctor or nurse or someone who doesn't understand Crohn's asking a million questions along the way. I really look forward to being able to ask questions and have them answered and also answer some questions myself along the way! : )
My name's Anna, I'm 23 years old, and was diagnosed with Crohn's and Celiac disease when I was 16. The diagnoses came after a perianal abscess was removed and a scope was performed my junior year of high school. I spent about six months each of my junior and senior years being tutored at home because of flares/abscess issues. For my first two years of college, I went to a university about 2 hours away from home and both spring semester had abscesses pop up. These led to hospitalizations, surgeries, PICC lines, and having to do medical withdrawals from school. After the second time, I transferred to a school close to home where I could commute to school and found a low-stress part-time job at a chiropractor's office. Fast forward to May 2010 and I FINALLY graduated (although I have yet to find my first "big kid job" haha).
After numerous problems/flare ups with the abscess wound (which we later found was from a fistula) I started Remicade almost 3 years ago. My pediatric GI was extremely apprehensive to start Remicade so I was previously on 6MP, Pred, and rotating between Cipro and Flagyl monthly for a year. I have had GREAT results with Remicade, minus the random illnesses you don't normally see in a young girl, mumps and shingles = not fun haha. I get the Remi every 7 weeks, do monthly B12 injections, and take a daily probiotic.
Since I started Remi, I had no flares or even pain in the fistula area until last winter. Last November an MRI showed a small abscess in the area where the previous abscesses had been but when my surgeon went in, he was unable to find it and told me it would probably go away with a round of everyone's favorites, Cipro and Flagyl. Then in February I ended up in the ER with horrible pain in the same area. Isn't it funny how after a few times, you get a certain pain and it's EXACTLY how you remember it and you KNOW what it is? This time around the surgeon was able to find the abscess, which was much larger than anticipated, and inserted a seton into the fistula. I saw the surgeon monthly until August when he told me that the fistula was taking longer than he expected to heal and didn't want to see me for 6 months.
In the meantime, I'm from Pittsburgh but had been living in New York with a friend job hunting. At the beginning of October I had that all too familiar feeling around the seton area. So, I drove home and my GI put me on a 2 week dose of Cipro and Flagyl. Day 13 of the meds I started to have excruciating pain in the perianal area, running a fever, and was getting a lot of bleeding/discharge from the area. Both the GI nurse and surgeon's nurse told me to head to the ER. They admitted me, did an MRI the next morning, drained the abscess and put in another seton, directly next to my first one the following morning. Had another 2 week round of Cipro and Flagy, along with Oxycodone and lots of sitz baths. Saw both Doctors about 3 weeks ago and since I had still been having a lot of pain and the surgeon could feel inflammation, did another 2 weeks of the meds. I finished them last Thursday, and after having a little bit of relief from the pain during those 2 weeks, I can slowly feel more pain going on in that area again. I'm not running a fever or anything so I'm trying to hope for the best that we're not getting any more inflammation in there or something. It just seems like it's taking me so much longer to bounce back to my normal self this time than in February.
It just seems that this is a merry go round of the same things over and over again. Throughout the years it has definitely caused some road blocks, forced me to take some detours, and I am known for always putting on a smile when I'm out and about. Lately though I'm finding it harder to paste on that smile. I'm just ready to get my adult life started and once again Crohn's has stalled that process. Sitting for an hour or two is difficult at this point so I really have no drive to even begin to start applying again for a job that would require me to be in an office all day. Luckily, my parents are extremely supportive and helpful and I'm able to take this time to just let myself heal. I am truly thankful that the intestinal pain side of Crohn's is minimal for me and I "only" have to deal with these ridiculous fistula's and abscesses though. I'm also thankful to find a site like this because no matter how much friends and family think they understand what you're going through, I feel like only people who have dealt with Crohn's can understand. So I realize this is ridiculously long but it did feel good to just tell my story without having a Doctor or nurse or someone who doesn't understand Crohn's asking a million questions along the way. I really look forward to being able to ask questions and have them answered and also answer some questions myself along the way! : )
