My name is Andrea,
I am a wife and mom of two little boys (3 and 1). In addition, I work full time and am a current doctoral student. After months of severe pain, diarrhea, and weight loss I was recently diagnosed with moderate to severe Crohn's Disease. Coming to this diagnosis seems to have taken forever, but in hindsight I am floored by the incredible rate that my symptoms became more and more severe within several months and acutely over the last several weeks. Beginning in July I began experiencing adbominal pain, diarrhea, fatigue, and eventually flu-like symptoms for which I was hospitalized for six days. I acquired an infection during this time and received IVs and antibiotics to control a very high fever. During this time, I was also started on 60 mg Prednisone (now tapered to 40 mg). While in the hospital, I had a colonoscopy (a previous lower CT scan had already shown inflammation). My colonoscopy revealed areas of my large intestine and colon covered in ulcers and severe inflammation that was allowing only a very narrow space for food to pass through (hence, no formed stools in 3 months). I was also diagnosed with a partial fistula. My (brand new to me) gastroenterologist has indicated that there is so much inflammation and ulcers that another CT and colonoscopy should be performed to biopsy tissues to confirm Crohn's, but she says "she is still sure."
Now, I am home and trying to deal with this information. She has had the "you-will-probably-be-on-meds-for-rest-of-your-life" talk with me as well as the "scary-side-effects" talk. I spent the follow up doctor's office feeling like I was dying of a terminal illness. One of the things my doctor told me to do was research the disease. And so, I have. (After all, I am a doctoral student - albeit not in the field of medicine, but I do know how to conduct some research.) What I have learned is that most GI docs only discuss medicaton as an intervention for Crohn's and diet is rarely suggested as an alternative (or significant contributing factor). Online research, texts, some medical studies, and lots of personal testimonials seem to indicate this may not be the case. In fact, many people indicate that they are symptom-free from some radical changes in diet, such as the AIP, Paleo, SCD, or others. I have decided to take back some control and try the auto-immune version of Paleo. I started last week and within 24 hours I have my first formed stool in months. Now I can go 1-3 times a day (with is an improvement over my regular 8-10), but it is slow and still painful.
Paleo is super hard, seems very expensive, and my cravings/withdrawals are kind of hard to bear. I hear this stage passes. I also am confronted with how to ever eat food out in public, worried that my doctor might dismiss Paleo as a viable option, or even worse - that it won't work. I'm also not convinced that I want my little ones to do Paleo (or that they would), so for now it's two sets of meals which is even more stressful.
This is my first post and while I feel informed by others' posts I am scared at how much many of you have been through. I'm feeling sad, overwhelmed, totally exhausted (thank you steroids) and in need of some encouragement related to diagnosis/prognosis, diet, and overall quality of life.
I am a wife and mom of two little boys (3 and 1). In addition, I work full time and am a current doctoral student. After months of severe pain, diarrhea, and weight loss I was recently diagnosed with moderate to severe Crohn's Disease. Coming to this diagnosis seems to have taken forever, but in hindsight I am floored by the incredible rate that my symptoms became more and more severe within several months and acutely over the last several weeks. Beginning in July I began experiencing adbominal pain, diarrhea, fatigue, and eventually flu-like symptoms for which I was hospitalized for six days. I acquired an infection during this time and received IVs and antibiotics to control a very high fever. During this time, I was also started on 60 mg Prednisone (now tapered to 40 mg). While in the hospital, I had a colonoscopy (a previous lower CT scan had already shown inflammation). My colonoscopy revealed areas of my large intestine and colon covered in ulcers and severe inflammation that was allowing only a very narrow space for food to pass through (hence, no formed stools in 3 months). I was also diagnosed with a partial fistula. My (brand new to me) gastroenterologist has indicated that there is so much inflammation and ulcers that another CT and colonoscopy should be performed to biopsy tissues to confirm Crohn's, but she says "she is still sure."
Now, I am home and trying to deal with this information. She has had the "you-will-probably-be-on-meds-for-rest-of-your-life" talk with me as well as the "scary-side-effects" talk. I spent the follow up doctor's office feeling like I was dying of a terminal illness. One of the things my doctor told me to do was research the disease. And so, I have. (After all, I am a doctoral student - albeit not in the field of medicine, but I do know how to conduct some research.) What I have learned is that most GI docs only discuss medicaton as an intervention for Crohn's and diet is rarely suggested as an alternative (or significant contributing factor). Online research, texts, some medical studies, and lots of personal testimonials seem to indicate this may not be the case. In fact, many people indicate that they are symptom-free from some radical changes in diet, such as the AIP, Paleo, SCD, or others. I have decided to take back some control and try the auto-immune version of Paleo. I started last week and within 24 hours I have my first formed stool in months. Now I can go 1-3 times a day (with is an improvement over my regular 8-10), but it is slow and still painful.
Paleo is super hard, seems very expensive, and my cravings/withdrawals are kind of hard to bear. I hear this stage passes. I also am confronted with how to ever eat food out in public, worried that my doctor might dismiss Paleo as a viable option, or even worse - that it won't work. I'm also not convinced that I want my little ones to do Paleo (or that they would), so for now it's two sets of meals which is even more stressful.
This is my first post and while I feel informed by others' posts I am scared at how much many of you have been through. I'm feeling sad, overwhelmed, totally exhausted (thank you steroids) and in need of some encouragement related to diagnosis/prognosis, diet, and overall quality of life.
