Hey all!
I've been a long time lurker, but after my official diagnosis earlier this week, I thought I would also officially join this awesome community
My story is quite long (sorry in advance!), but I'm hoping I can help someone along the way.
A little background on how all of this came to be: In 2014, I went to see a doctor for intermittent abdominal pain/gas/bloating, and walked out 30 seconds later with an IBS diagnosis and prescription that I never bothered to fill. Things remained fairly mild and consistent over the next couple of years until late 2016 when I started to notice some changes in my stool. A 5-6 on the Bristol stool chart became my norm, but no changes in urgency or frequency (1-4 times/day), so I didn't think too much of it given my prior IBS diagnosis.
In April of 2017, I had a fairly major surgery to remove some breast tissue from my underarm area, and post-op I noticed I was losing a little bit of weight unintentionally. I attributed it to the stress I was under preparing for my wedding in June and went on my way. After the wedding, I was in stress-free bliss, but noticed some other odd things pop up - my knees started to ache, my muscles started to twitch constantly, I cramped up during my workouts, and my skin/scalp became really dry.
In November, I started seeing a Physical Therapist for my knee pain, and it was there that I started to wonder if something was going on. My PT performed some light soft tissue work that left me severely bruised for 4+ weeks. He pointed out that I wasn't healing normally, and asked if there were any changes in my health or nutrition (and there weren't). It was around this time, I started to experience some severe abdominal pain - not the bloating and intermittent pain I was used to experiencing, this was pain that felt like someone was stabbing me all over and had lit my intestines on fire. I toughed every episode out at home, but thought I was headed to the ER several times. When these "episodes" occurred, I would know they were coming because the pain would build over a day or two, before reaching it's peak that lasted ~12-18 hours, and then slowly dissipated over another 2-3 days. These episodes happened three times through Nov/Dec, before I finally made an appointment with my doctor.
I had my first appointment in January of this year, at which point I had quit working out because it had become so uncomfortable, and I had lost about 20lbs (from a muscular 165lbs to a soft 145lbs). We did some blood work which tested me for Celiac Disease and Thyroid issues - both of which came back negative - but did end up showing that I was borderline anemic, and that my CRP levels were in the mid 40's. I was sent to a GI, who said I was a textbook case for Crohn's based on my symptoms and stats: female in her late 20's, now 30, diagnosed first with IBS. I guess Crohn's is commonly (and unfortunately) mis-diagnosed as IBS in many women by doctors who don't understand (or don't care) that IBS is a diagnosis of exclusion, not just a label to slap on to get someone out of their office as quick as possible.
She scheduled me for a Colonoscopy in late February, and found that my Terminal Ileum was completely trashed - severe inflammation, several large ulcers, and narrowing/thickening of my intestinal wall - which my GI said indicates the disease had been ongoing for sometime. By appearance alone, she was sure I had Crohn's, but when my biopsies came back inconclusive (which she explained commonly happens if inflammation is present during the biopsy), we had to keep testing to get a definitive diagnosis. Next up was the Prometheus IBD test. The results came in with one genetic and one autoimmune marker slightly off, but the test determined it was unlikely that I had Crohn's disease. My GI told me a false-negative was definitely possible with the Prometheus test (she mentioned 10-15%), so on to the next test we went.
I do want to add, around this time (early March, post-Prometheus test), I started taking a smorgasbord of supplements in hopes of helping my inflammation/pain and random symptoms, which we had assumed were likely do to malabsorption. Here's the list (which I'm still taking today): proteolytic enzymes, probiotics, iron, folate, B12, fish oil, curcumin, vitamin D, green tea, NAC, rutin, calcium, magnesium, and CBD oil (sublingually). Several I had found from digging through Crohn's research, and several I wanted to take for general health. I'm not saying I know what the hell I'm doing (and maybe it's just luck), but since supplementing regularly with the above, I haven't had any severe episodes where I'm ready to head to the ER, just some mild-moderate irritation here and there (upset stomach, indigestion, nausea, minor burning in lower abdomen, etc.).
Toward the end of March I had a CT scan which showed the damage was confined to my TI (I guess we'll take this as a win?), but significant damage nonetheless, and still severely inflamed (despite feeling better overall with my supplement regimen). Without positive blood work or biopsies to confirm a Crohn's diagnosis, we started the process of eliminating all other possibilities (apparently there are only so many things that can cause that kind of damage to your TI). Over the next few weeks we did blood and stool tests for every differential diagnosis, like systemic mastocytosis, intestinal tuberculosis, yersina, etc. - which brings us to this week.
All tests are back, and all tests are negative, leading us to a diagnosis of Crohn's disease. It's been a mental (and physical) rollercoaster over the last 6 months, but I'm relieved to finally have an answer and understanding of what's going on. Today is my first day of Uceris (9mg), and I'll have a follow-up with my GI in a month to see how things are going.
Some questions for you guys (if you've made it this far!): I feel like my symptoms are somewhat atypical for the "usual" presentation of Crohn's (i.e. running to the bathroom 10-15x a day with watery diarrhea). Did any of you start with fairly normal bowel movements, or loose-ish stools like myself, and progress to extreme urgency and frequency over time? Or have your bowel habits remained pretty consistent over the life of your disease? Also, how do you know when you're in a flare? From everything I've read, it seems like flares are extremely significant episodes (lasting weeks to sometimes years) that can land you in the hospital. The only time I've been in extreme pain were the episodes I mentioned previously, which build over a couple days, lasted about 12 hours, and then I was back to normal again in a couple days - everything else has just been the general irritation I spoke about above. I guess what I'm wondering is if I'm currently in a flare given the inflammation of my TI (even though I'm not having extreme pain), if the short episodes where I experienced extreme pain would be considered a flare, or if I have yet to even experience an actual flare?
Kudos to you if you read my entire story! I appreciate all of your help and look forward to getting to know everyone better!
I've been a long time lurker, but after my official diagnosis earlier this week, I thought I would also officially join this awesome community
My story is quite long (sorry in advance!), but I'm hoping I can help someone along the way.A little background on how all of this came to be: In 2014, I went to see a doctor for intermittent abdominal pain/gas/bloating, and walked out 30 seconds later with an IBS diagnosis and prescription that I never bothered to fill. Things remained fairly mild and consistent over the next couple of years until late 2016 when I started to notice some changes in my stool. A 5-6 on the Bristol stool chart became my norm, but no changes in urgency or frequency (1-4 times/day), so I didn't think too much of it given my prior IBS diagnosis.
In April of 2017, I had a fairly major surgery to remove some breast tissue from my underarm area, and post-op I noticed I was losing a little bit of weight unintentionally. I attributed it to the stress I was under preparing for my wedding in June and went on my way. After the wedding, I was in stress-free bliss, but noticed some other odd things pop up - my knees started to ache, my muscles started to twitch constantly, I cramped up during my workouts, and my skin/scalp became really dry.
In November, I started seeing a Physical Therapist for my knee pain, and it was there that I started to wonder if something was going on. My PT performed some light soft tissue work that left me severely bruised for 4+ weeks. He pointed out that I wasn't healing normally, and asked if there were any changes in my health or nutrition (and there weren't). It was around this time, I started to experience some severe abdominal pain - not the bloating and intermittent pain I was used to experiencing, this was pain that felt like someone was stabbing me all over and had lit my intestines on fire. I toughed every episode out at home, but thought I was headed to the ER several times. When these "episodes" occurred, I would know they were coming because the pain would build over a day or two, before reaching it's peak that lasted ~12-18 hours, and then slowly dissipated over another 2-3 days. These episodes happened three times through Nov/Dec, before I finally made an appointment with my doctor.
I had my first appointment in January of this year, at which point I had quit working out because it had become so uncomfortable, and I had lost about 20lbs (from a muscular 165lbs to a soft 145lbs). We did some blood work which tested me for Celiac Disease and Thyroid issues - both of which came back negative - but did end up showing that I was borderline anemic, and that my CRP levels were in the mid 40's. I was sent to a GI, who said I was a textbook case for Crohn's based on my symptoms and stats: female in her late 20's, now 30, diagnosed first with IBS. I guess Crohn's is commonly (and unfortunately) mis-diagnosed as IBS in many women by doctors who don't understand (or don't care) that IBS is a diagnosis of exclusion, not just a label to slap on to get someone out of their office as quick as possible.
She scheduled me for a Colonoscopy in late February, and found that my Terminal Ileum was completely trashed - severe inflammation, several large ulcers, and narrowing/thickening of my intestinal wall - which my GI said indicates the disease had been ongoing for sometime. By appearance alone, she was sure I had Crohn's, but when my biopsies came back inconclusive (which she explained commonly happens if inflammation is present during the biopsy), we had to keep testing to get a definitive diagnosis. Next up was the Prometheus IBD test. The results came in with one genetic and one autoimmune marker slightly off, but the test determined it was unlikely that I had Crohn's disease. My GI told me a false-negative was definitely possible with the Prometheus test (she mentioned 10-15%), so on to the next test we went.
I do want to add, around this time (early March, post-Prometheus test), I started taking a smorgasbord of supplements in hopes of helping my inflammation/pain and random symptoms, which we had assumed were likely do to malabsorption. Here's the list (which I'm still taking today): proteolytic enzymes, probiotics, iron, folate, B12, fish oil, curcumin, vitamin D, green tea, NAC, rutin, calcium, magnesium, and CBD oil (sublingually). Several I had found from digging through Crohn's research, and several I wanted to take for general health. I'm not saying I know what the hell I'm doing (and maybe it's just luck), but since supplementing regularly with the above, I haven't had any severe episodes where I'm ready to head to the ER, just some mild-moderate irritation here and there (upset stomach, indigestion, nausea, minor burning in lower abdomen, etc.).
Toward the end of March I had a CT scan which showed the damage was confined to my TI (I guess we'll take this as a win?), but significant damage nonetheless, and still severely inflamed (despite feeling better overall with my supplement regimen). Without positive blood work or biopsies to confirm a Crohn's diagnosis, we started the process of eliminating all other possibilities (apparently there are only so many things that can cause that kind of damage to your TI). Over the next few weeks we did blood and stool tests for every differential diagnosis, like systemic mastocytosis, intestinal tuberculosis, yersina, etc. - which brings us to this week.
All tests are back, and all tests are negative, leading us to a diagnosis of Crohn's disease. It's been a mental (and physical) rollercoaster over the last 6 months, but I'm relieved to finally have an answer and understanding of what's going on. Today is my first day of Uceris (9mg), and I'll have a follow-up with my GI in a month to see how things are going.
Some questions for you guys (if you've made it this far!): I feel like my symptoms are somewhat atypical for the "usual" presentation of Crohn's (i.e. running to the bathroom 10-15x a day with watery diarrhea). Did any of you start with fairly normal bowel movements, or loose-ish stools like myself, and progress to extreme urgency and frequency over time? Or have your bowel habits remained pretty consistent over the life of your disease? Also, how do you know when you're in a flare? From everything I've read, it seems like flares are extremely significant episodes (lasting weeks to sometimes years) that can land you in the hospital. The only time I've been in extreme pain were the episodes I mentioned previously, which build over a couple days, lasted about 12 hours, and then I was back to normal again in a couple days - everything else has just been the general irritation I spoke about above. I guess what I'm wondering is if I'm currently in a flare given the inflammation of my TI (even though I'm not having extreme pain), if the short episodes where I experienced extreme pain would be considered a flare, or if I have yet to even experience an actual flare?
Kudos to you if you read my entire story! I appreciate all of your help and look forward to getting to know everyone better!
