Hi!
Some of you know my journey and struggles already, but I thought I make a clear post about it, in the hopes of someone being able to offer guidance, or professional I could turn to.
28 year old male, diagnosed with ileal Crohn's 2022 December, at that point colonoscopy findings as well as symptoms were mild, seemingly only in the terminal ileum, at least based on ileocolonoscopy + MRE + symptoms. I also have celiac disease since 16 years, that is well controlled and the blood tests and biopsy confirmed everything good in duodenum. Calpro was 450. Everything in blood work was fine including markers of inflammation and malnutrition.
My symptoms on diagnosis were 4-5 stools per day, always liquid, and odd pains few times per week, but nothing really bad. I have immediately started to look into diet and lifestyle changes, and had the following:
-tried Pediasure and Ensure formulas as PEN next to CDED - symptoms improved somewhat but Calpro increased up to 800 and I still had liquidish diarrhea from time to time.
-tried Modulen as PEN, then EEN - the point I went EEN on it, after a few days I was very visibly sick, had liquid diarrhea 4-5 times again, and calpro was 1200
-went on SCD diet, excluded further foods so made it almost keto, and basically was eating a very monotonous diet - calpro went down to 130, and I had stools once per day typically quite solid, Bristol 4-5, recovered a lot of weight, so clearly I was reacting very positively to nutritional changes
-I cheated on the diet on my wedding, Calpro skyrocketed again to 1600
-trying to address the inflammation, again I thought I will try EEN - I tried Fortisip, got somewhat worse, so instead I switched to Elemental 028 which doesn't have any intact proteins that could cause allergies, again I have gone into a much worse flare, my eyes went bloody 2-3 days after starting consistent with episcleritis, had liquid diarrhea 4-5 times per day, I didn't feel great and according to people around me looked really sick
-going back to SCD keto-like brought calpro back down to 260 but couldn't bring it below, stools went back to 1-2x per day, not liquid but looser than a healthy person
-I thought I probably just have issues with maltodextrin, so I got some Kate Farms ordered from the US, I took 1 yesterday, 2 today, and again its the same story - I am having liquid diarrhea, already 3 times, concerned to get into a flare again if I continue
So basically, I tried pretty much all formulas under the sun, there is not even an overlap in ingredients, Kate Farms is organic, plant based, E028 doesnt even have intact proteins, Modulen uses corn syrup, etc etc carbohydrate sources are different etc. My concern is not that these things dont improve my condition. My concern is that they make it explicitly worse, every time, and I cannot make sense of why. I haven't read anything like this in any studies. And clearly nutrition plays a critical role in my disease as I respond to what I eat very intensely both positively and negatively. I cannot make any sense of this, and I am even concerned I might have a different disease altogether. And my staple diet on EEN included a lot of meat, eggs, and almonds, so quite a lot of fat. Even though I do have issue with eating too many almonds at once, it also didn't feel like the fat would be the problem, given I ate 12 eggs per day and was very happy on them.
I tried to ask my IBD specialist, but he said he is not knowledgeable about nutrition, and basically pushing me to go on biologics. I will have an MRE and compare with 1 year ago, to see if there is damage there that would justify this. But I am even more sceptical because of how differently I seem to react to this.
Anyone has any idea whatsoever about what might be behind this, what I could do, and if there is a professional anywhere in the world specialising on Crohn's who could advise? At this point I am even contemplating just trying it ingredient by ingredient, make a shake, and see my reaction. My impression is any carbohydrates and any fiber is making things worse. So most likely I will try carnivore.
Thanks!
Some of you know my journey and struggles already, but I thought I make a clear post about it, in the hopes of someone being able to offer guidance, or professional I could turn to.
28 year old male, diagnosed with ileal Crohn's 2022 December, at that point colonoscopy findings as well as symptoms were mild, seemingly only in the terminal ileum, at least based on ileocolonoscopy + MRE + symptoms. I also have celiac disease since 16 years, that is well controlled and the blood tests and biopsy confirmed everything good in duodenum. Calpro was 450. Everything in blood work was fine including markers of inflammation and malnutrition.
My symptoms on diagnosis were 4-5 stools per day, always liquid, and odd pains few times per week, but nothing really bad. I have immediately started to look into diet and lifestyle changes, and had the following:
-tried Pediasure and Ensure formulas as PEN next to CDED - symptoms improved somewhat but Calpro increased up to 800 and I still had liquidish diarrhea from time to time.
-tried Modulen as PEN, then EEN - the point I went EEN on it, after a few days I was very visibly sick, had liquid diarrhea 4-5 times again, and calpro was 1200
-went on SCD diet, excluded further foods so made it almost keto, and basically was eating a very monotonous diet - calpro went down to 130, and I had stools once per day typically quite solid, Bristol 4-5, recovered a lot of weight, so clearly I was reacting very positively to nutritional changes
-I cheated on the diet on my wedding, Calpro skyrocketed again to 1600
-trying to address the inflammation, again I thought I will try EEN - I tried Fortisip, got somewhat worse, so instead I switched to Elemental 028 which doesn't have any intact proteins that could cause allergies, again I have gone into a much worse flare, my eyes went bloody 2-3 days after starting consistent with episcleritis, had liquid diarrhea 4-5 times per day, I didn't feel great and according to people around me looked really sick
-going back to SCD keto-like brought calpro back down to 260 but couldn't bring it below, stools went back to 1-2x per day, not liquid but looser than a healthy person
-I thought I probably just have issues with maltodextrin, so I got some Kate Farms ordered from the US, I took 1 yesterday, 2 today, and again its the same story - I am having liquid diarrhea, already 3 times, concerned to get into a flare again if I continue
So basically, I tried pretty much all formulas under the sun, there is not even an overlap in ingredients, Kate Farms is organic, plant based, E028 doesnt even have intact proteins, Modulen uses corn syrup, etc etc carbohydrate sources are different etc. My concern is not that these things dont improve my condition. My concern is that they make it explicitly worse, every time, and I cannot make sense of why. I haven't read anything like this in any studies. And clearly nutrition plays a critical role in my disease as I respond to what I eat very intensely both positively and negatively. I cannot make any sense of this, and I am even concerned I might have a different disease altogether. And my staple diet on EEN included a lot of meat, eggs, and almonds, so quite a lot of fat. Even though I do have issue with eating too many almonds at once, it also didn't feel like the fat would be the problem, given I ate 12 eggs per day and was very happy on them.
I tried to ask my IBD specialist, but he said he is not knowledgeable about nutrition, and basically pushing me to go on biologics. I will have an MRE and compare with 1 year ago, to see if there is damage there that would justify this. But I am even more sceptical because of how differently I seem to react to this.
Anyone has any idea whatsoever about what might be behind this, what I could do, and if there is a professional anywhere in the world specialising on Crohn's who could advise? At this point I am even contemplating just trying it ingredient by ingredient, make a shake, and see my reaction. My impression is any carbohydrates and any fiber is making things worse. So most likely I will try carnivore.
Thanks!
