This might end up being a long post because it includes summing up some of my long complex history dating back to 2004 I believe.
It was weird how it first started, I had some minor symptoms related to IBD like being prone to heartburn but mostly I was normal and healthy. One day I was eating chips and onion dip and felt bad, so I put them aside, and I kept feeling worse and it stuck with me for days, then weeks, I thought it was food poisoning or something, eventually went to the doctor, they ran me through anti-biotics and such, my best results were from protonix. I was about 99lb.s at the time at 5'11". My symptoms included frequent vomiting of all food consumed, diarrhea, malaise, loss of appetite, constant discomfort in stomach I can only describe as the feeling of having eaten a wool sock.
It wasn't until that summer I got to a GI doctor who diagnosed me with a severe case of Crohns and put me on Remicade, I saw immediate results from it and soon was in remission. In time I was able to eat a normal diet with minor side-effects.
As time went on I began to have cramping and diarrhea and had no idea what was going on, it usually started at the end of an infusion period and we began to move them closer together. Eventually I was struck with terrible pain and diarrhea, cold flashes, and couldn't figure out what it was, I went through colonoscopies and such and talk of changing my medication.
I noticed undigested red peppers or tomatoes in my BMs so I cut out foods with them and saw immediate improvement, but little did I know this was just the tip of the iceberg.
In time after I was moved to an adult doctor but with a worsening condition, though I had been switched from Remicade to Humira. At this time I had also begun to develop chronic abscesses on my glutes, most likely the result of a fistula.
I was also having a lot of issue with motility of food, I would eat food, and it would sit in my stomach and I would bloat until I vomited.
In time I would identify that I was gluten intolerant, intolerant to sugar-replacers like sucralose, high fructose corn syrup etc. oils like canola, corn oil, the majority of fruits, vegetables and legumes including more 'friendly' ones like potatoes, even if I have meat stewed with potatoes it's enough to make me have impeded digestion and diarrhea.
So I've finally completed a total elimination of all irritations so far as I can guess and here is my current dietary options:
-Lactose products of all types are safe EXCEPT greek yogurt which gives me terrible cramps and diarrhea, weird because people talk up the benefits of greek yogurt so much
-eggs
-white meats and fish, no beef, pork is okay, I have not yet found a brand of any type of hot dog I can tolerate, and only one brand of turkey burgers (jenny-o's)
-Udi's bread
-Annie's mac & cheese
-Ice creams not containing HFCS
In stark contrast with some of the things I normally couldn't eat, I have frozen yogurt bars containing blueberry and strawberry seeds I can tolerate with no negative effect, and taco bell hot sauce packets I use to spice up food despite the ingredients containing many things that even in small amounts often make me ill
Rice is often safe but it's a case-by-case basis.
The thing is these losses of food have been incrementally worsening so this leads me to believe that something in my digestive system is deteriorating. I've tried digestive enzymes, glutamine, turmeric, apple cider vinegar, some other natural OTC anti-inflammatory drugs and literally nothing works.
Further more, and I know this is a big no-no in most cases, I've been neglecting to take my humira, now let me explain. At first we kicked up my dose to once a week due to the chronic abscesses, it seemed they were linked to the end of my dose period, I was on a 2 week per dose schedule and would sometimes encounter insurance difficulties receiving my humira so they bumped it up to once a week to avoid it.
Well at first I would occasionally forget a few days to take it, then I'd get lazy about picking up the new dose or insurance would give me trouble, and I noticed I wasn't having issues, so I dragged out to twice a month, because that's also one less co-pay and I live on disability because of the severity of my symptoms, I don't have a lot of money.
At the old twice a month with a safe diet I had no issues of 'flare ups' or abscesses, so I continued at twice a month for a time to try it out, without consulting my doctor, because it was safe in the past it will be fine again and doctors will always err on the side of caution when it's their malpractice suit on the line.
Well at the end of last dose I held out an extra week or so in picking it up, and when I did there was another insurance hang-up and I didn't get it for over a month and a half and in that time I never developed an abscess, I haven't had a flare up and I've gained 9 lb.s.
Now I'm starting to outright question the diagnosis of Crohn's and wondering if there isn't something deeper at the root of my problem involving my digestive function, maybe in the liver or pancreas.
Now my doctor at first obviously questioned my ideas when I suggested things like gluten intolerance and other food intolerance, and sought to treat my issues with medications, but in time as I've had provable results through elimination diets he's come to trust my opinion but I think getting him to understand that there's something else at the root of this deterioration might be harder.
I'm going to inform him of my time off the medication on my next visit in January and that compounded with my weight gain should be proof enough that my issues are rooted in my diet.
So I'm wondering what kind of questions should I be asking, what kind of research should I be doing? What kinds of specific things cause the kind of deteriorating food tolerances like I've seen that I can look into?
I can't help but feel, reading around, my case is very unusual, when I read articles hyping up digestive solutions in weeding out meat consumption in favor of vegetable-heavy diets, frequent lactose intolerant, things completely inverse of my experiences, and it leaves me feeling very lost when none of the information I find is quite relevant to my experiences.
It was weird how it first started, I had some minor symptoms related to IBD like being prone to heartburn but mostly I was normal and healthy. One day I was eating chips and onion dip and felt bad, so I put them aside, and I kept feeling worse and it stuck with me for days, then weeks, I thought it was food poisoning or something, eventually went to the doctor, they ran me through anti-biotics and such, my best results were from protonix. I was about 99lb.s at the time at 5'11". My symptoms included frequent vomiting of all food consumed, diarrhea, malaise, loss of appetite, constant discomfort in stomach I can only describe as the feeling of having eaten a wool sock.
It wasn't until that summer I got to a GI doctor who diagnosed me with a severe case of Crohns and put me on Remicade, I saw immediate results from it and soon was in remission. In time I was able to eat a normal diet with minor side-effects.
As time went on I began to have cramping and diarrhea and had no idea what was going on, it usually started at the end of an infusion period and we began to move them closer together. Eventually I was struck with terrible pain and diarrhea, cold flashes, and couldn't figure out what it was, I went through colonoscopies and such and talk of changing my medication.
I noticed undigested red peppers or tomatoes in my BMs so I cut out foods with them and saw immediate improvement, but little did I know this was just the tip of the iceberg.
In time after I was moved to an adult doctor but with a worsening condition, though I had been switched from Remicade to Humira. At this time I had also begun to develop chronic abscesses on my glutes, most likely the result of a fistula.
I was also having a lot of issue with motility of food, I would eat food, and it would sit in my stomach and I would bloat until I vomited.
In time I would identify that I was gluten intolerant, intolerant to sugar-replacers like sucralose, high fructose corn syrup etc. oils like canola, corn oil, the majority of fruits, vegetables and legumes including more 'friendly' ones like potatoes, even if I have meat stewed with potatoes it's enough to make me have impeded digestion and diarrhea.
So I've finally completed a total elimination of all irritations so far as I can guess and here is my current dietary options:
-Lactose products of all types are safe EXCEPT greek yogurt which gives me terrible cramps and diarrhea, weird because people talk up the benefits of greek yogurt so much
-eggs
-white meats and fish, no beef, pork is okay, I have not yet found a brand of any type of hot dog I can tolerate, and only one brand of turkey burgers (jenny-o's)
-Udi's bread
-Annie's mac & cheese
-Ice creams not containing HFCS
In stark contrast with some of the things I normally couldn't eat, I have frozen yogurt bars containing blueberry and strawberry seeds I can tolerate with no negative effect, and taco bell hot sauce packets I use to spice up food despite the ingredients containing many things that even in small amounts often make me ill
Rice is often safe but it's a case-by-case basis.
The thing is these losses of food have been incrementally worsening so this leads me to believe that something in my digestive system is deteriorating. I've tried digestive enzymes, glutamine, turmeric, apple cider vinegar, some other natural OTC anti-inflammatory drugs and literally nothing works.
Further more, and I know this is a big no-no in most cases, I've been neglecting to take my humira, now let me explain. At first we kicked up my dose to once a week due to the chronic abscesses, it seemed they were linked to the end of my dose period, I was on a 2 week per dose schedule and would sometimes encounter insurance difficulties receiving my humira so they bumped it up to once a week to avoid it.
Well at first I would occasionally forget a few days to take it, then I'd get lazy about picking up the new dose or insurance would give me trouble, and I noticed I wasn't having issues, so I dragged out to twice a month, because that's also one less co-pay and I live on disability because of the severity of my symptoms, I don't have a lot of money.
At the old twice a month with a safe diet I had no issues of 'flare ups' or abscesses, so I continued at twice a month for a time to try it out, without consulting my doctor, because it was safe in the past it will be fine again and doctors will always err on the side of caution when it's their malpractice suit on the line.
Well at the end of last dose I held out an extra week or so in picking it up, and when I did there was another insurance hang-up and I didn't get it for over a month and a half and in that time I never developed an abscess, I haven't had a flare up and I've gained 9 lb.s.
Now I'm starting to outright question the diagnosis of Crohn's and wondering if there isn't something deeper at the root of my problem involving my digestive function, maybe in the liver or pancreas.
Now my doctor at first obviously questioned my ideas when I suggested things like gluten intolerance and other food intolerance, and sought to treat my issues with medications, but in time as I've had provable results through elimination diets he's come to trust my opinion but I think getting him to understand that there's something else at the root of this deterioration might be harder.
I'm going to inform him of my time off the medication on my next visit in January and that compounded with my weight gain should be proof enough that my issues are rooted in my diet.
So I'm wondering what kind of questions should I be asking, what kind of research should I be doing? What kinds of specific things cause the kind of deteriorating food tolerances like I've seen that I can look into?
I can't help but feel, reading around, my case is very unusual, when I read articles hyping up digestive solutions in weeding out meat consumption in favor of vegetable-heavy diets, frequent lactose intolerant, things completely inverse of my experiences, and it leaves me feeling very lost when none of the information I find is quite relevant to my experiences.
