- Joined
- Feb 25, 2012
- Messages
- 9
Hello Everyone,
So, this is actually my first experience ever with a forum type of web experience. I was searching online about my condition, as I am always looking for new pain relief suggestions, and I saw this forum and thought maybe I could receive and potentially provide some help. I apologize for the length of the message, I have just never actually sat down and written about my experience.
I am a 28 year old female and have had a diagnosis of "Crohn's Colitis" for a little over 4 years. I had never had any bowel issues before the night I was breaking up with my boyfriend of 5 years, when I was on the toilet about every 10 minutes. In retrospect, this makes total sense because Crohn's can be triggered by stress. Anyway, my symptoms continued to be pretty bad, and I finally made the decision to see a GI doctor after a night or two of going to the bathroom every hour, pain that was so bad it made me cry and bleeding. I had my first colonoscopy and when I received my results in the mail, the diagnosis was "Crohn's Coliltis." The doctor never called or discussed with me my condition, so I was never really sure if I had Crohn's or Colitis, or what, just what medicines I was supposed to take. He originally started me on Prednisone, Asacol and Imuran. These greatly helped my condition, and eventually I was taken off the Prednisone, took Entocort for a bit, then just had the maintenance meds. I currently take Asacol and Imuran.
Over the course of the next year and a half or so, I would try to wean myself down to as low amount of meds I could go (I hate the fact that I have to take all of these pills in my 20s). I would go too low and have a flare up maybe about once every 6 months. Luckily, though, as long as I did steroids for a little bit and increased my maintenance meds, I could recover rather quickly.
About 3 years ago, I began to have some minor pain in my neck and shoulder area. I tried stretching, going to the Chiropractor for 3 months, probably bought a million different pillows, etc., but it never really got any better. Then, about 6 months later, I woke up with an intense pain in what I now know is my left sacroiliac region. To make a long story short, over the course of the next year, I saw 3 Orthopedic specialists, a neurologist, did physical therapy for 6 months, acupuncture, had 2 root blocker steroid injections, 2 MRIs, 3 X-rays and an ultrasound, all with no results. Everyone had told me that I had a "perfectly healthy spine." I was in pain all of the time and was at a complete loss about what to do about it. I had to go to the ER on my 26th birthday because the pain was so intense I literally could not walk, and could barely get by with crutches. They sent me home with hydrocodone, which made me loopy but clearly didn't help the symptoms.
My physical therapist had suggested going to a rheumatologist because she knew there was nothing she could do, and that I might have something wrong in my blood. By the time I was actually able to get an appointment with him, I had had pain for 2 1/2 years with no real diagnosis. I was quite hopeless and this point. I saw him, told him about all of my symptoms over the course of the past few years (I even had a whole page, single-spaced document that listed my entire pain history on it). After telling him about all of my symptoms, he knew right away that I was "textbook" Crohn's sacroiliitis. I looked at him in amazement, and asked him, "wait, that's a thing? Like, other people actually have this? It's actually a real thing???" He assured me that indeed, it was, and I literally cried in his office because I felt so overwhelmed with relief and vindication from so many years of having no clue what I had. My blood test for my inflammation levels and another x-ray confirmed his diagnosis. The worse part for me was that the first line of my pain history sheet states "Crohn's disease diagnosed 12/07" and not a SINGLE healthcare professional I had seen over the course of the past few years had noticed the connection, even though to my rheumatologist, he had seen it all the time.
Because the only thing that would alleviate the symptoms for me was a high dose of steroids (which I obviously could not take long-term), he suggested Remicaid or Humira. Unfortunately for me, I am a grad student with crappy student health insurance, have already pumped thousands of dollars down the drain trying to discover a diagnosis, and the $2,000-a-shot Humira just wasn't an option for me.
On an incredible twist of fate, my boyfriend's sister had been seeing a chiropractor for some back issues, and had told him my story. He told her to invite me in for a free consultation. I refused to go because I had already had 3 months of chiropractic care and 6 months of PT to no avail. However, I figured, "what the hell" and gave it a shot. I went for my first visit, and he did the normal chiropractor stuff, and I was sucked in, lol. However, miraculously to me, over the course of the next few months, I actually was getting better. It was a very slow process, but I eventually have worked my way to have zero lower back pain. I still have the upper back/neck/shoulder tightness/inflammation/pain, but went from a pain level of 9 to 2-3. All of this because of damn Crohn's disease! I really never would have thought.
So, that is my story. Thank you to those of you who actually stuck it out and read the whole thing. I know it was long, this has just been such a taxing journey for me. I have met a few other people with Crohn's, but have never ever met someone else with Crohn's sacroiliitis or other joint inflammation problems due to Crohn's. If anyone has had similar experiences, I would tremendously appreciate to hear what you have gone through, and what you have done to help with symptoms. Thanks again
So, this is actually my first experience ever with a forum type of web experience. I was searching online about my condition, as I am always looking for new pain relief suggestions, and I saw this forum and thought maybe I could receive and potentially provide some help. I apologize for the length of the message, I have just never actually sat down and written about my experience.
I am a 28 year old female and have had a diagnosis of "Crohn's Colitis" for a little over 4 years. I had never had any bowel issues before the night I was breaking up with my boyfriend of 5 years, when I was on the toilet about every 10 minutes. In retrospect, this makes total sense because Crohn's can be triggered by stress. Anyway, my symptoms continued to be pretty bad, and I finally made the decision to see a GI doctor after a night or two of going to the bathroom every hour, pain that was so bad it made me cry and bleeding. I had my first colonoscopy and when I received my results in the mail, the diagnosis was "Crohn's Coliltis." The doctor never called or discussed with me my condition, so I was never really sure if I had Crohn's or Colitis, or what, just what medicines I was supposed to take. He originally started me on Prednisone, Asacol and Imuran. These greatly helped my condition, and eventually I was taken off the Prednisone, took Entocort for a bit, then just had the maintenance meds. I currently take Asacol and Imuran.
Over the course of the next year and a half or so, I would try to wean myself down to as low amount of meds I could go (I hate the fact that I have to take all of these pills in my 20s). I would go too low and have a flare up maybe about once every 6 months. Luckily, though, as long as I did steroids for a little bit and increased my maintenance meds, I could recover rather quickly.
About 3 years ago, I began to have some minor pain in my neck and shoulder area. I tried stretching, going to the Chiropractor for 3 months, probably bought a million different pillows, etc., but it never really got any better. Then, about 6 months later, I woke up with an intense pain in what I now know is my left sacroiliac region. To make a long story short, over the course of the next year, I saw 3 Orthopedic specialists, a neurologist, did physical therapy for 6 months, acupuncture, had 2 root blocker steroid injections, 2 MRIs, 3 X-rays and an ultrasound, all with no results. Everyone had told me that I had a "perfectly healthy spine." I was in pain all of the time and was at a complete loss about what to do about it. I had to go to the ER on my 26th birthday because the pain was so intense I literally could not walk, and could barely get by with crutches. They sent me home with hydrocodone, which made me loopy but clearly didn't help the symptoms.
My physical therapist had suggested going to a rheumatologist because she knew there was nothing she could do, and that I might have something wrong in my blood. By the time I was actually able to get an appointment with him, I had had pain for 2 1/2 years with no real diagnosis. I was quite hopeless and this point. I saw him, told him about all of my symptoms over the course of the past few years (I even had a whole page, single-spaced document that listed my entire pain history on it). After telling him about all of my symptoms, he knew right away that I was "textbook" Crohn's sacroiliitis. I looked at him in amazement, and asked him, "wait, that's a thing? Like, other people actually have this? It's actually a real thing???" He assured me that indeed, it was, and I literally cried in his office because I felt so overwhelmed with relief and vindication from so many years of having no clue what I had. My blood test for my inflammation levels and another x-ray confirmed his diagnosis. The worse part for me was that the first line of my pain history sheet states "Crohn's disease diagnosed 12/07" and not a SINGLE healthcare professional I had seen over the course of the past few years had noticed the connection, even though to my rheumatologist, he had seen it all the time.
Because the only thing that would alleviate the symptoms for me was a high dose of steroids (which I obviously could not take long-term), he suggested Remicaid or Humira. Unfortunately for me, I am a grad student with crappy student health insurance, have already pumped thousands of dollars down the drain trying to discover a diagnosis, and the $2,000-a-shot Humira just wasn't an option for me.
On an incredible twist of fate, my boyfriend's sister had been seeing a chiropractor for some back issues, and had told him my story. He told her to invite me in for a free consultation. I refused to go because I had already had 3 months of chiropractic care and 6 months of PT to no avail. However, I figured, "what the hell" and gave it a shot. I went for my first visit, and he did the normal chiropractor stuff, and I was sucked in, lol. However, miraculously to me, over the course of the next few months, I actually was getting better. It was a very slow process, but I eventually have worked my way to have zero lower back pain. I still have the upper back/neck/shoulder tightness/inflammation/pain, but went from a pain level of 9 to 2-3. All of this because of damn Crohn's disease! I really never would have thought.
So, that is my story. Thank you to those of you who actually stuck it out and read the whole thing. I know it was long, this has just been such a taxing journey for me. I have met a few other people with Crohn's, but have never ever met someone else with Crohn's sacroiliitis or other joint inflammation problems due to Crohn's. If anyone has had similar experiences, I would tremendously appreciate to hear what you have gone through, and what you have done to help with symptoms. Thanks again
