Hello all.
I'm a 29 year old female, just recently diagnosed with Crohn's, formally, about a month ago. I figured it was time to join this community...I've been reading along as a non-member for a while, and this seems like a great place to get some support and find people who have possibly had similar pasts and experiences.
I can't say I felt better hearing this diagnosis, but there is a certain amount of relief I've been feeling. I've had digestive issues for such a long time...I'm exhausted. Embarrassment and being generally a quiet, keep to myself type of person has really kept me from figuring out/advocating for myself to help identify what has been going on for all of this time. Although, I'm pretty certain this could have been addressed many years ago, if my primary care physician had been more willing to send me to a gastroenterologist from age 18 on, when my complaints really began. I had seemed to go only about a year or two between flare ups, and would only go to him when I was truly in pain and suffering. At one point, I swallowed my fear and went to him for examination of an anal fistula (that I believe I've had since early teen years) that he identified as a harmless pilonidal cyst...I recall him chuckling about how it was just a pocket of hair. I had even gone to him several years ago about what I thought was a hernia in my lower right abdomen where I get (and still have) a literal bump/protrusion that occurs in my stomach during cramping, which he stated was normal bowel functioning. A few years after that, painful cramping led me to go to the emergency room, where I stayed overnight for monitoring, and was discharged with a short term prescription for Lorazepam - "It was probably just anxiety." After that, he encouraged me to take an antidepressant (Effexor) that many people with IBS often find relief with. I was so disheartened to think that these physical symptoms that I was experiencing held no credibility in the medical world, or so it seemed. So until recently, I'd been held under the IBS umbrella, as I hear many others get stuck in as well.
In March 2012, after working a night shift job for only a few months, I had a terrible day where I was in the worst pain of my life. The stomach issues had been getting more active around that time (diarrhea, cramping, gurgling sounds - these are very embarrassing in most settings - work colleagues began referring to it as my "night shift stomach monster"). My stomach cramping was a 9.9 out of 10...the additional 0.1 I can only imagine would have pushed me to black out. I caved and went to the doctor again. I broke down in tears I explained that were caused by "desperation" and was given a referral to see a gastroenterologist.
Getting in to see someone took several months, and when I finally had an upper endoscopy which showed only mild gastritis, I was disheartened and backed off. Not that I wanted to have something be wrong with me...I just didn't want to hear again from a medical provider, that it was something probably in my head. Continued pain however, sent me back to follow up, and I subsequently had a colonoscopy and CT scan in December 2012.
This confirmed narrowing of my terminal ileum, external (and possible internal) fistula, and a diagnosis of Crohn's was given. My gastroenterologist started me on Apriso (Mesalamine) and Prednisone to attempt to decrease the inflammation of the ileum. One week after I began the prednisone (Jan 9th), I experienced, yet again an episode of pain even worse than the previous. Sent for x-ray and blood work that day, and my gastroenterologist felt it was necessary at this time to meet with a surgeon.
Met with the surgeon shortly after, and he validated so much for me. He sat with me and showed me the concerning parts of my CT scan - primarily the partial blockage shown in my terminal ileum, and an area of significant dilation right before the stricture. So basically, a four lane highway reduced drastically to one lane...barely a lane...a shoulder. That validation...has been the most amazing thing to me. He shared that this area of dilation is not something that could be caused overnight - most likely it has been developing over years. The surgeon was also shocked that my doctor had not identified the fistula correctly, and that I'd had this for over a decade.
The surgery to perform laparoscopic bowel resection - only a small area from my ileum to my colon - will be done February 5th. It's felt that since I have not responded at all to prednisone, the area is most likely scar tissue, that will need to be removed. I'm a ball of nerves about this. Don't even get me started about the limited diet I've been on for months...and will be on for months to come...I guess I can bear it if it means a period of better health, better quality of life. I know things will get a lot worse before they get better...and there are so many risks that come with surgery. But I am hopeful...Can anyone identify with being in a place where they are saying OK, and PLEASE to surgery like this? Most days I'm in a lot of pain, but I know that there are so many risks that come with losing a piece of your intestine.
Anyway, that was such a long introduction. But my journey has been so long already. I'm glad to now have joined this group. I hope I can learn a lot from all of you.
I'm a 29 year old female, just recently diagnosed with Crohn's, formally, about a month ago. I figured it was time to join this community...I've been reading along as a non-member for a while, and this seems like a great place to get some support and find people who have possibly had similar pasts and experiences.
I can't say I felt better hearing this diagnosis, but there is a certain amount of relief I've been feeling. I've had digestive issues for such a long time...I'm exhausted. Embarrassment and being generally a quiet, keep to myself type of person has really kept me from figuring out/advocating for myself to help identify what has been going on for all of this time. Although, I'm pretty certain this could have been addressed many years ago, if my primary care physician had been more willing to send me to a gastroenterologist from age 18 on, when my complaints really began. I had seemed to go only about a year or two between flare ups, and would only go to him when I was truly in pain and suffering. At one point, I swallowed my fear and went to him for examination of an anal fistula (that I believe I've had since early teen years) that he identified as a harmless pilonidal cyst...I recall him chuckling about how it was just a pocket of hair. I had even gone to him several years ago about what I thought was a hernia in my lower right abdomen where I get (and still have) a literal bump/protrusion that occurs in my stomach during cramping, which he stated was normal bowel functioning. A few years after that, painful cramping led me to go to the emergency room, where I stayed overnight for monitoring, and was discharged with a short term prescription for Lorazepam - "It was probably just anxiety." After that, he encouraged me to take an antidepressant (Effexor) that many people with IBS often find relief with. I was so disheartened to think that these physical symptoms that I was experiencing held no credibility in the medical world, or so it seemed. So until recently, I'd been held under the IBS umbrella, as I hear many others get stuck in as well.
In March 2012, after working a night shift job for only a few months, I had a terrible day where I was in the worst pain of my life. The stomach issues had been getting more active around that time (diarrhea, cramping, gurgling sounds - these are very embarrassing in most settings - work colleagues began referring to it as my "night shift stomach monster"). My stomach cramping was a 9.9 out of 10...the additional 0.1 I can only imagine would have pushed me to black out. I caved and went to the doctor again. I broke down in tears I explained that were caused by "desperation" and was given a referral to see a gastroenterologist.
Getting in to see someone took several months, and when I finally had an upper endoscopy which showed only mild gastritis, I was disheartened and backed off. Not that I wanted to have something be wrong with me...I just didn't want to hear again from a medical provider, that it was something probably in my head. Continued pain however, sent me back to follow up, and I subsequently had a colonoscopy and CT scan in December 2012.
This confirmed narrowing of my terminal ileum, external (and possible internal) fistula, and a diagnosis of Crohn's was given. My gastroenterologist started me on Apriso (Mesalamine) and Prednisone to attempt to decrease the inflammation of the ileum. One week after I began the prednisone (Jan 9th), I experienced, yet again an episode of pain even worse than the previous. Sent for x-ray and blood work that day, and my gastroenterologist felt it was necessary at this time to meet with a surgeon.
Met with the surgeon shortly after, and he validated so much for me. He sat with me and showed me the concerning parts of my CT scan - primarily the partial blockage shown in my terminal ileum, and an area of significant dilation right before the stricture. So basically, a four lane highway reduced drastically to one lane...barely a lane...a shoulder. That validation...has been the most amazing thing to me. He shared that this area of dilation is not something that could be caused overnight - most likely it has been developing over years. The surgeon was also shocked that my doctor had not identified the fistula correctly, and that I'd had this for over a decade.
The surgery to perform laparoscopic bowel resection - only a small area from my ileum to my colon - will be done February 5th. It's felt that since I have not responded at all to prednisone, the area is most likely scar tissue, that will need to be removed. I'm a ball of nerves about this. Don't even get me started about the limited diet I've been on for months...and will be on for months to come...I guess I can bear it if it means a period of better health, better quality of life. I know things will get a lot worse before they get better...and there are so many risks that come with surgery. But I am hopeful...Can anyone identify with being in a place where they are saying OK, and PLEASE to surgery like this? Most days I'm in a lot of pain, but I know that there are so many risks that come with losing a piece of your intestine.
Anyway, that was such a long introduction. But my journey has been so long already. I'm glad to now have joined this group. I hope I can learn a lot from all of you.
My gosh, I'm so sorry to hear of everything you've been through. You poor thing