Background
I was born cesarean and was never breastfed - this is important as it relates to never developing a healthy probiotic gut microbiome since birth. I at the typical unstructured Standard American Diet. I was diagnosed with Crohn's disease around the age 16 (~2001). Symptoms that preceded diagnosis were constant bouts of diarrhea, bloody stools, sharp periods of cramping, and weight loss. My family used to eat out at Chinese buffets a lot and I thought maybe I caught some sort of pathogen or something. At that time I was put on Prednisone and that seemed to get the diarrhea under control and allow me to put weight back on. The older I got the more I learned to deal with all the traditional IBS symptoms.
After graduating college in 2010 (around holiday) I had an abdominal abscess occur and had to go to the ER to treat. I believe this episode to be caused by binging on holiday desserts and all sorts of grains (Italian family) therefore leading to pathogenic overgrowth. The did the standard Cipro/Flagyl antibiotic combo and lucked out when the abscess subsiding - so I'm grateful to say I still have all my guts in tact. From there I tried Pentesa with no noticeable benefit, very briefly did Imuran (Azathioprine) and experienced extreme debilitating joint pain (I couldn't even walk around). After this I swore off all pharmaceuticals and focused on researching, changing my diet, and finding a job. Nearly exactly a year later I ended up in the ER again with a fistula. Suffice to say that was the most miserable Christmas/New Year I ever had. Again, it was the holidays and I was overeating all sorts of high carb foods. Starting to see the pattern on how dietary habits effect your gut flora?
I've had the Perianal fistula for the past 2 years. In the ER it was originally lanced to drain the fluid buildup and I had a seton (plastic straw-like apparatus to keep the wound open) inserted. I've taken Cipro/Flagyl for it initially with no positive outcome. I was then put on Humira (40mg Bi-weekly) not too long after and have been on it for the past 2 years. I had various consults with a Colorectal specialist but decided not to pursue major invasive surgery due to fear of irreparable muscle damage. On a daily basis I depended on the use of female sanitary pads in my underwear because the draining was so profuse.
I've had no change in symptoms in the past 2 years and my GI has failed to provide me with test results showing any decrease in inflammation to prove efficacy of Humira. Around Holiday 2014 my seton became untied and fell out. From my experience and understanding setons do not heal fistulas, they are a stop gap measure to allow for the safe removal of infectious matter. I consulted with my specialist and decided not to have another one placed. I would recommend anyone that has their seton fall out have another one placed so they don’t have to worry about rampant infection. The fistula kept draining on its own only now the skin would periodically seal up and I would get a buildup of fluid under the skin. On a few occasions I had to lance the fistula on my own.
Being the New Year I decided to make a personal choice this year to cease my drug treatment (2/20/15) and solely pursue the dietary approach outlined below. I do not encourage you to stop medication or disobey your doctor’s recommendations. I simply wish to share my experiences and offer hope for an alternative approach to healing fistulas and autoimmune disorders.
Chronic non-digestive symptoms: malnutrition, skin eczema/outbreaks on my face/chest/back/etc, food sensitivities, eye floaters, intermittent alternating strabismus, reddening/inflammation of the eyes, insomnia, fatigue, pain in my lower right back, anxiety, depression, excessive urination, joints popping /carpal tunnel aches, ringing in ears, stuffy nose, bleeding gums, trouble focusing, slow nail regen, excessive sweating during exercise, and more recently a fistula and heart palpitations. I’m 29 now and many have persisted consistently since I was a teenager. Sometimes I wonder how I made it through college and graduated with honors...I wouldn't be surprised if I'm a candidate for premature cardiovascular diseases (even though I'm skinny, and "appear" healthy, even "according" to my blood work...) because of my body being in a prolonged state of constant inflammation from systemic pathogenic overgrowth.
My treatment thread in the fistula forum
Progress
In the past 4 months since discontinuing Humira I've had my fistula completely stop draining, along with all swelling and pain subsiding. As I was fine tuning my diet and observing the effects of moderate salicylate foods there were a few days here and there of symptom recurrence. Previously while on Humira and eating an unstructured, home-cooked, mostly Paleo, "healthy" whole food diet I would have constant drainage. Since starting L-glutamine, bone broth, and beef gelatin I'm now starting to sleep a little bit better - as I can now recall some dreams.
More progress updates to come
I was born cesarean and was never breastfed - this is important as it relates to never developing a healthy probiotic gut microbiome since birth. I at the typical unstructured Standard American Diet. I was diagnosed with Crohn's disease around the age 16 (~2001). Symptoms that preceded diagnosis were constant bouts of diarrhea, bloody stools, sharp periods of cramping, and weight loss. My family used to eat out at Chinese buffets a lot and I thought maybe I caught some sort of pathogen or something. At that time I was put on Prednisone and that seemed to get the diarrhea under control and allow me to put weight back on. The older I got the more I learned to deal with all the traditional IBS symptoms.
After graduating college in 2010 (around holiday) I had an abdominal abscess occur and had to go to the ER to treat. I believe this episode to be caused by binging on holiday desserts and all sorts of grains (Italian family) therefore leading to pathogenic overgrowth. The did the standard Cipro/Flagyl antibiotic combo and lucked out when the abscess subsiding - so I'm grateful to say I still have all my guts in tact. From there I tried Pentesa with no noticeable benefit, very briefly did Imuran (Azathioprine) and experienced extreme debilitating joint pain (I couldn't even walk around). After this I swore off all pharmaceuticals and focused on researching, changing my diet, and finding a job. Nearly exactly a year later I ended up in the ER again with a fistula. Suffice to say that was the most miserable Christmas/New Year I ever had. Again, it was the holidays and I was overeating all sorts of high carb foods. Starting to see the pattern on how dietary habits effect your gut flora?
I've had the Perianal fistula for the past 2 years. In the ER it was originally lanced to drain the fluid buildup and I had a seton (plastic straw-like apparatus to keep the wound open) inserted. I've taken Cipro/Flagyl for it initially with no positive outcome. I was then put on Humira (40mg Bi-weekly) not too long after and have been on it for the past 2 years. I had various consults with a Colorectal specialist but decided not to pursue major invasive surgery due to fear of irreparable muscle damage. On a daily basis I depended on the use of female sanitary pads in my underwear because the draining was so profuse.
I've had no change in symptoms in the past 2 years and my GI has failed to provide me with test results showing any decrease in inflammation to prove efficacy of Humira. Around Holiday 2014 my seton became untied and fell out. From my experience and understanding setons do not heal fistulas, they are a stop gap measure to allow for the safe removal of infectious matter. I consulted with my specialist and decided not to have another one placed. I would recommend anyone that has their seton fall out have another one placed so they don’t have to worry about rampant infection. The fistula kept draining on its own only now the skin would periodically seal up and I would get a buildup of fluid under the skin. On a few occasions I had to lance the fistula on my own.
Being the New Year I decided to make a personal choice this year to cease my drug treatment (2/20/15) and solely pursue the dietary approach outlined below. I do not encourage you to stop medication or disobey your doctor’s recommendations. I simply wish to share my experiences and offer hope for an alternative approach to healing fistulas and autoimmune disorders.
Chronic non-digestive symptoms: malnutrition, skin eczema/outbreaks on my face/chest/back/etc, food sensitivities, eye floaters, intermittent alternating strabismus, reddening/inflammation of the eyes, insomnia, fatigue, pain in my lower right back, anxiety, depression, excessive urination, joints popping /carpal tunnel aches, ringing in ears, stuffy nose, bleeding gums, trouble focusing, slow nail regen, excessive sweating during exercise, and more recently a fistula and heart palpitations. I’m 29 now and many have persisted consistently since I was a teenager. Sometimes I wonder how I made it through college and graduated with honors...I wouldn't be surprised if I'm a candidate for premature cardiovascular diseases (even though I'm skinny, and "appear" healthy, even "according" to my blood work...) because of my body being in a prolonged state of constant inflammation from systemic pathogenic overgrowth.
My treatment thread in the fistula forum
Progress
In the past 4 months since discontinuing Humira I've had my fistula completely stop draining, along with all swelling and pain subsiding. As I was fine tuning my diet and observing the effects of moderate salicylate foods there were a few days here and there of symptom recurrence. Previously while on Humira and eating an unstructured, home-cooked, mostly Paleo, "healthy" whole food diet I would have constant drainage. Since starting L-glutamine, bone broth, and beef gelatin I'm now starting to sleep a little bit better - as I can now recall some dreams.
More progress updates to come
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