Hi everyone. I have a really long and complicated medical history, so I'll try to truncate it as much as I can.
I'm an almost-34 year old female of (as far as we know!) 100% Ashkenazi descent. I was born six weeks prematurely and required oxygen and feeding tubes. At birth, I was diagnosed with lactose intolerance and hyperactive airways. Throughout infancy, I had chronic colds, bronchitis, and diarrhea. My mother was told that I was swallowing mucus instead of expelling it, causing the diarrhea. She never really believed it, but could never get a better answer. She had to take a two year sabbatical from teaching to care for me-- a chief reason being to maintain my weight.
As far back as I can remember, I was sick. I do not ever remember feeling well. I would get sick every time I ate, coughing up mucus and whatever just went down. I always felt weak and run down. I never remember having an appetite or craving food. It was always this chore I had to do-- eat and be sick.
When I was seven, I had a full ENT workup, where I was re-diagnosed with bronchial asthma. (I still struggle with it today). The GI symptoms just got worse and were never addressed beyond shrugs from our doctor. I would have dumping episodes every time I ate. Compounded with all of this, I was diagnosed with panic disorder at age nine and have been in treatment most of my life.
As I got older, the malabsorption worsened to such a degree that I couldn't eat out because I wouldn't make it into the bathroom in time. At 17, without a single ounce of labwork, I was given the diagnoses of IBS-D and GERD. To date, I have never responded to any IBS or reflux treatments given. Due to my GI symptoms, I became increasing phobic about going out and developed agoraphobia.
Finally, four years ago, my symptoms became a crisis situation. I lost almost 30 lbs in less than 2 months. Every meal would go straight through me and developed what I was told was protein edema in my abdomen and legs. I was rushed to the ER where, awaiting labwork, I was wrongfully given an eating disorder diagnosis without an evaluation. That labwork came back positive for c. difficile, which boggled the doctors as I hadn't been on antibiotics, proton-pump inhibitors, and hadn't been near a public restroom in years. My vitamins (A, D, iron, etc) and minerals (potassium, etc) were dangerously low. I had iron infusions and PPN lines, which temporarily raised my levels. During my hospitalization, I had endo and colonoscopies, biopsies, sonograms, and an MRI. During that period, everyone thought I had Celiac or Crohns, but both the biopsies and bloodwork came back negative. The scopes showed a lot of damage from c. diff, chronic reflux and diarrhea. I had a prolapse and sludge in my gallbladder before I was 30. The doctor who did the scopes ever-so-kindly told me that my guts look liked they belonged to an 85 year old with a lifetime of chronic GI issues.
Unfortunately, I relapsed with c. diff multiple times. During my second hospital stay for c. diff, I was down to 89 lbs and put on a 6,000 calorie-a-day diet and developed refeeding syndrome. I finally had an FMT procedure last June, which was successful of curing the c. difficile...
But nothing else got better. The dumping episodes I've experienced my entire life continue. The diarrhea and mucus output have worsened and I was put on an Imodium regime that I follow to this day-- 3 1/2 days on, 3/ 1/2 days off. So I have 3 1/2 days where I can go out, go to school (I'm a doctoral student), and try to live a fairly normal life. Then it's 3 1/2 days (Thursday night through Sunday night) where I live in the bathroom. The edema persists, my weight continues to remain dangerously unstable. My doctors (GI, infectious disease, and endocrine) grew nasty and unhelpful, declaring, without performing further labwork, that I had 'refractory IBS' and the edema was 'body dysmorphia'. Despite endless conversations with my MD/PHD therapist and RD/MS dietitian to my doctors, confirming this was not psychosomatic or psychological and that I was truly very physically ill, I could not get a medical doctor to take my symptoms seriously. My vitamin levels fell to single digits. My teeth started to break. My hair fell out. Going to the store required a full day of rest afterward. Finally, in a desperate attempt to be heard, I went back to the GI doctor who performed my FMT and begged him to help.
I did a 72 hour stool test and was diagnosed with severe exocrine pancreatic insufficiency. My current bloodwork shows my Vitamin D at 3 ng/ml and my Vitamin A at less than 0.03 mg/l. I'm very anemic and losing protein all over the place. Finally, last month, my GI ordered genetic testing for CF. Nearly all of my family was wiped out in WWII, so we don't have a lot of family history to go by.
I find myself in the horrible position of hoping the tests come back positive for mutations so I can finally have some answers and hopefully get medical treatment for a very real organic illness I have bee struggling with all of my life and, conversely, feeling deeply guilty and ashamed for hoping the result is CF.
Thank you for allowing me to voice all of this. It's been 18 days, and I'm still waiting for the results. Has anyone had a similar experience?
I'm an almost-34 year old female of (as far as we know!) 100% Ashkenazi descent. I was born six weeks prematurely and required oxygen and feeding tubes. At birth, I was diagnosed with lactose intolerance and hyperactive airways. Throughout infancy, I had chronic colds, bronchitis, and diarrhea. My mother was told that I was swallowing mucus instead of expelling it, causing the diarrhea. She never really believed it, but could never get a better answer. She had to take a two year sabbatical from teaching to care for me-- a chief reason being to maintain my weight.
As far back as I can remember, I was sick. I do not ever remember feeling well. I would get sick every time I ate, coughing up mucus and whatever just went down. I always felt weak and run down. I never remember having an appetite or craving food. It was always this chore I had to do-- eat and be sick.
When I was seven, I had a full ENT workup, where I was re-diagnosed with bronchial asthma. (I still struggle with it today). The GI symptoms just got worse and were never addressed beyond shrugs from our doctor. I would have dumping episodes every time I ate. Compounded with all of this, I was diagnosed with panic disorder at age nine and have been in treatment most of my life.
As I got older, the malabsorption worsened to such a degree that I couldn't eat out because I wouldn't make it into the bathroom in time. At 17, without a single ounce of labwork, I was given the diagnoses of IBS-D and GERD. To date, I have never responded to any IBS or reflux treatments given. Due to my GI symptoms, I became increasing phobic about going out and developed agoraphobia.
Finally, four years ago, my symptoms became a crisis situation. I lost almost 30 lbs in less than 2 months. Every meal would go straight through me and developed what I was told was protein edema in my abdomen and legs. I was rushed to the ER where, awaiting labwork, I was wrongfully given an eating disorder diagnosis without an evaluation. That labwork came back positive for c. difficile, which boggled the doctors as I hadn't been on antibiotics, proton-pump inhibitors, and hadn't been near a public restroom in years. My vitamins (A, D, iron, etc) and minerals (potassium, etc) were dangerously low. I had iron infusions and PPN lines, which temporarily raised my levels. During my hospitalization, I had endo and colonoscopies, biopsies, sonograms, and an MRI. During that period, everyone thought I had Celiac or Crohns, but both the biopsies and bloodwork came back negative. The scopes showed a lot of damage from c. diff, chronic reflux and diarrhea. I had a prolapse and sludge in my gallbladder before I was 30. The doctor who did the scopes ever-so-kindly told me that my guts look liked they belonged to an 85 year old with a lifetime of chronic GI issues.
Unfortunately, I relapsed with c. diff multiple times. During my second hospital stay for c. diff, I was down to 89 lbs and put on a 6,000 calorie-a-day diet and developed refeeding syndrome. I finally had an FMT procedure last June, which was successful of curing the c. difficile...
But nothing else got better. The dumping episodes I've experienced my entire life continue. The diarrhea and mucus output have worsened and I was put on an Imodium regime that I follow to this day-- 3 1/2 days on, 3/ 1/2 days off. So I have 3 1/2 days where I can go out, go to school (I'm a doctoral student), and try to live a fairly normal life. Then it's 3 1/2 days (Thursday night through Sunday night) where I live in the bathroom. The edema persists, my weight continues to remain dangerously unstable. My doctors (GI, infectious disease, and endocrine) grew nasty and unhelpful, declaring, without performing further labwork, that I had 'refractory IBS' and the edema was 'body dysmorphia'. Despite endless conversations with my MD/PHD therapist and RD/MS dietitian to my doctors, confirming this was not psychosomatic or psychological and that I was truly very physically ill, I could not get a medical doctor to take my symptoms seriously. My vitamin levels fell to single digits. My teeth started to break. My hair fell out. Going to the store required a full day of rest afterward. Finally, in a desperate attempt to be heard, I went back to the GI doctor who performed my FMT and begged him to help.
I did a 72 hour stool test and was diagnosed with severe exocrine pancreatic insufficiency. My current bloodwork shows my Vitamin D at 3 ng/ml and my Vitamin A at less than 0.03 mg/l. I'm very anemic and losing protein all over the place. Finally, last month, my GI ordered genetic testing for CF. Nearly all of my family was wiped out in WWII, so we don't have a lot of family history to go by.
I find myself in the horrible position of hoping the tests come back positive for mutations so I can finally have some answers and hopefully get medical treatment for a very real organic illness I have bee struggling with all of my life and, conversely, feeling deeply guilty and ashamed for hoping the result is CF.
Thank you for allowing me to voice all of this. It's been 18 days, and I'm still waiting for the results. Has anyone had a similar experience?
