- Joined
- Mar 22, 2023
- Messages
- 116
Hey,
I am writing this post to share my personal experience of managing Crohn's for 2 years and 4 months without medications. It's important to note that Crohn's disease severity, presentation, subtype, and the way it reacts is subject to many-many individual variations. So nothing I share below should be taken as medical advice, please work with your GI / IBD specialist as well as do your own research and be your best advocate. Regardless, I will try to remain as objective as possible, and I really hope that some of this may prove useful to at least some of you, or give you some new ideas and hope.
About me:
29 year old male, celiac disease treated with full GF diet since age of 12
Suffered from IBS-D like symptoms since at least 10+ years, average 3-5 BM-s per day, often soft or liquid, and there were periods with worse symptoms, but ileocolonoscopy, SIBO tests, intolerance tests, etc., never really found anything other than sorbitol intolerance, and a bunch of random findings not deemed clinically significant.
This got suddenly worse in 2022 November, with all 4-5 stools consistently extremely soft / liquid, accompanied with mild to moderate occasional pain, especially connected to specific foods.
Throughout the 2-3 months diagnostic process I had:
-calpro of 700
-MRE showing some thickening in the terminal ileum
-colonoscopy showed 2 small ulcers in the terminal ileum, biopsy of them showed mild inflammation
There were some findings that caused some doubts apart from the overall mild presentation with a long preceding chronic phase.
-CRP/ESR never was elevated, not even close
-no granulomas on biopsies
-ASCA negative
-no sign of any type of malnutrition, no vitamin or iron deficiencies, overall perfectly normal bloodwork
-only discovered during the following months, but my calpro could easily 5x in both directions at the same lab within 2 weeks, depending on the food I consumed
However the IBD specialist couldn't think of anything else, so told me its ileal Crohn's, explained that he recommends starting on a biologic, to which I asked for some time to decide.
Given my overall mild state and fairly normal quality of life, decided to first try to see what I can achieve without medications. I should mention I am not strongly against meds, it's great to have them as a fallback, but after reading through all the research I could get my hands on, I made the decision based on the following factors:
1. Having a gene mutation making secondary loss of response to anti-TNFs more likely
2. Not wanting to exhaust the therapeutic arsenal too young - in my mind with current medications, each of us has a time span until available medications stop working - I dont know if thats gonna be 3 months or 300 years, but mentally it was much easier to think about all the options are still on the table if needed
3. Remarkable success seen in studies by dietary interventions, especially EEN
4. Point 3) being especially true for ileal Crohn's, while generally this subtype tends to be less reactive to medications
Throughout the last 2.5-ish years, these are the things I have tried that made no difference or possibly made things worse (but aware that it helped some others):
1. Turmeric / Curcuma in different forms
2. Probiotics of different varieties
3. Boswelia
4. Foods meant to alter microbiome, like yoghurt, sauerkraut, etc.
5. Traditional enteral nutrition formulas (they have great success rate, but Modulen, Ensure, Fortimel, Elemental 028 all made both my symptoms and calpro results significantly worse)
6. CDED diet
7. Carnivore diet
8. probably many others that I dont remember
Here are the things that worked for me:
1. Leading a food and symptom journal, and trying to find specific foods that did / didn't work for me
2. Identifying 3-4 safe foods to rely on and fall back to when things are not going the right direction
3. Discovering that the blood veins in my eyes become more prominent when I am eating the wrong foods, multiple days before feeling it in my digestive system
4. Setting up my basic dietary principles based on SCD after reading Breaking the vicious cycle - but I had to take out many foods that are SCD legal, and I could also add foods that are SCD illegal such as sugar
5. Compleat Chicken Garden Blend - honestly a life-saver for me, unfortunately I have to take a trip to the US to buy it and fly it back home, buts its that good - basically whenever I felt bad, going 5-6 days on it exclusively made a huge positive impact - when I could afford to go on it for 3-4 weeks it was like a miracle for me
6. Homemade versions of enteral nutrition formulas - mimicing the Compleat formula at home with a food processor, but also gradually changing it, and pimping it up with multivitamins and minerals for nutritional completeness - sometimes I would go on this for weeks almost exclusively
7. Consistency mattered a lot in my case: so far I haven't found anything liquidy that helped me, even this organic EEN is not completely liquid
8. Vitamin D might have helped, not sure, but I do still take it
What did I achieve, where am I today?
1. My last MRE from half a year ago showed no signs of Crohn's, neither chronic nor active
2. My calpro results in the last 2 weeks were at or below 50
3. All my bloodwork is still very normal incl inflammation markers
4. Am in clinical remission, have 1-2 BM-s per day, Bristol 3-5 , no pain, and spent the absolute majority of my last 1 year in a similarly good state, and live a normal, happy, if somewhat restricted life, but can go to gymn, do all of my hobbies, do mountain climbing, sometimes go to party, work, etc.
Important disclaimers:
1. While searching for the right mix, e.g. when trying out standard enteral nutrition EEN, I sometimes had calpro skyrocket to 2000 and had liquid BM-s 4-5 times per day with some pain
2. In general I am very reliant on following consistent foods, food patterns, and have to think very consciously about eating out or have a drink or two with friends - often these would take 1-2 weeks to recover from, but there was an evening when I drank a lot, that took a few months
3. My calpro throughout this journey has been around 120-350 on average, sometimes going way beyond that - in my case I know my body is extremely sensitive to calpro, e.g. with a 7-800 calpro I still have quite low level of overall inflammation as per scopes and imaging compared to others with Crohn's
What would I recommend if you are determined to use some non-medication / dietary / lifestyle options in helping your Crohn's disease?
1. Think about it as an extra tool in your toolbox, that could complement medications as well as potentially stand on its own depending on your personal situation
2. Look at your doctor as a partner, Crohn's is unpredictable, you should keep monitoring inflammation levels, malnutrition levels, any internal damage, via regular blood work, imaging, stool tests, scopes, even if you feel well
3. Start a food and symptom journal and look for patterns, experiment, but be aware that dietary changes sometimes take many days or even weeks to have an effect on symptoms, so try to look at it broadly
4. Be realistic about your goals: e.g. if you have severe Crohn's with fistulas or strictures, you would likely need a lot of time to make a dent, and probably some sort of medication too to complement it
5. Find your own trigger foods, safe foods, and any other things that could be relevant: nicotine? exercise? stress? travel? alcohol? soda? etc.
6. Once you have identified a few safe foods, make sure you try to expand on them, and do not cause yourself to be malnourished, or miss out on any key vitamins or minerals - ideally work with a dietatician and / or doctor, or carefully calculate everything, AI could help make this easier
7. At some point, I would try EEN-s, and dont get desperate if the first one doesn't work out for you as many haven't worked for me - to me EEN is great to do a reset after screwing something up, and get back on track
8. Try to find early signs of your disease getting worse and react appropriately - for me it was in the eyes, for you it might be something else
9. All of this only makes sense if you are mentally disciplined: makes no sense to invest in reading labels, food prep, watch out for all these things, and then throw it all away for a delicious looking food that you already know deep down is going to hurt you and possibly put you on a negative spiral
10. Dont expect perfection: make some conscious decisions ahead of time on where you draw the line between your disease and quality of life: for me, I eat out at a restaurant or drink alcohol maybe once every month. There were times when it was even less frequent. Even these are "semi-safe" foods or drinks and not totally random. This 5% helps me stay on track 95% of time. My mind has adapted to treasuring these moments, and I remember every single one of them. If I was in a mental state that I needed more, I would probably consider adding some sort of medication to help and changing that ratio.
11. Be sceptical of any supplements that promise success
I am writing this post to share my personal experience of managing Crohn's for 2 years and 4 months without medications. It's important to note that Crohn's disease severity, presentation, subtype, and the way it reacts is subject to many-many individual variations. So nothing I share below should be taken as medical advice, please work with your GI / IBD specialist as well as do your own research and be your best advocate. Regardless, I will try to remain as objective as possible, and I really hope that some of this may prove useful to at least some of you, or give you some new ideas and hope.
About me:
29 year old male, celiac disease treated with full GF diet since age of 12
Suffered from IBS-D like symptoms since at least 10+ years, average 3-5 BM-s per day, often soft or liquid, and there were periods with worse symptoms, but ileocolonoscopy, SIBO tests, intolerance tests, etc., never really found anything other than sorbitol intolerance, and a bunch of random findings not deemed clinically significant.
This got suddenly worse in 2022 November, with all 4-5 stools consistently extremely soft / liquid, accompanied with mild to moderate occasional pain, especially connected to specific foods.
Throughout the 2-3 months diagnostic process I had:
-calpro of 700
-MRE showing some thickening in the terminal ileum
-colonoscopy showed 2 small ulcers in the terminal ileum, biopsy of them showed mild inflammation
There were some findings that caused some doubts apart from the overall mild presentation with a long preceding chronic phase.
-CRP/ESR never was elevated, not even close
-no granulomas on biopsies
-ASCA negative
-no sign of any type of malnutrition, no vitamin or iron deficiencies, overall perfectly normal bloodwork
-only discovered during the following months, but my calpro could easily 5x in both directions at the same lab within 2 weeks, depending on the food I consumed
However the IBD specialist couldn't think of anything else, so told me its ileal Crohn's, explained that he recommends starting on a biologic, to which I asked for some time to decide.
Given my overall mild state and fairly normal quality of life, decided to first try to see what I can achieve without medications. I should mention I am not strongly against meds, it's great to have them as a fallback, but after reading through all the research I could get my hands on, I made the decision based on the following factors:
1. Having a gene mutation making secondary loss of response to anti-TNFs more likely
2. Not wanting to exhaust the therapeutic arsenal too young - in my mind with current medications, each of us has a time span until available medications stop working - I dont know if thats gonna be 3 months or 300 years, but mentally it was much easier to think about all the options are still on the table if needed
3. Remarkable success seen in studies by dietary interventions, especially EEN
4. Point 3) being especially true for ileal Crohn's, while generally this subtype tends to be less reactive to medications
Throughout the last 2.5-ish years, these are the things I have tried that made no difference or possibly made things worse (but aware that it helped some others):
1. Turmeric / Curcuma in different forms
2. Probiotics of different varieties
3. Boswelia
4. Foods meant to alter microbiome, like yoghurt, sauerkraut, etc.
5. Traditional enteral nutrition formulas (they have great success rate, but Modulen, Ensure, Fortimel, Elemental 028 all made both my symptoms and calpro results significantly worse)
6. CDED diet
7. Carnivore diet
8. probably many others that I dont remember
Here are the things that worked for me:
1. Leading a food and symptom journal, and trying to find specific foods that did / didn't work for me
2. Identifying 3-4 safe foods to rely on and fall back to when things are not going the right direction
3. Discovering that the blood veins in my eyes become more prominent when I am eating the wrong foods, multiple days before feeling it in my digestive system
4. Setting up my basic dietary principles based on SCD after reading Breaking the vicious cycle - but I had to take out many foods that are SCD legal, and I could also add foods that are SCD illegal such as sugar
5. Compleat Chicken Garden Blend - honestly a life-saver for me, unfortunately I have to take a trip to the US to buy it and fly it back home, buts its that good - basically whenever I felt bad, going 5-6 days on it exclusively made a huge positive impact - when I could afford to go on it for 3-4 weeks it was like a miracle for me
6. Homemade versions of enteral nutrition formulas - mimicing the Compleat formula at home with a food processor, but also gradually changing it, and pimping it up with multivitamins and minerals for nutritional completeness - sometimes I would go on this for weeks almost exclusively
7. Consistency mattered a lot in my case: so far I haven't found anything liquidy that helped me, even this organic EEN is not completely liquid
8. Vitamin D might have helped, not sure, but I do still take it
What did I achieve, where am I today?
1. My last MRE from half a year ago showed no signs of Crohn's, neither chronic nor active
2. My calpro results in the last 2 weeks were at or below 50
3. All my bloodwork is still very normal incl inflammation markers
4. Am in clinical remission, have 1-2 BM-s per day, Bristol 3-5 , no pain, and spent the absolute majority of my last 1 year in a similarly good state, and live a normal, happy, if somewhat restricted life, but can go to gymn, do all of my hobbies, do mountain climbing, sometimes go to party, work, etc.
Important disclaimers:
1. While searching for the right mix, e.g. when trying out standard enteral nutrition EEN, I sometimes had calpro skyrocket to 2000 and had liquid BM-s 4-5 times per day with some pain
2. In general I am very reliant on following consistent foods, food patterns, and have to think very consciously about eating out or have a drink or two with friends - often these would take 1-2 weeks to recover from, but there was an evening when I drank a lot, that took a few months
3. My calpro throughout this journey has been around 120-350 on average, sometimes going way beyond that - in my case I know my body is extremely sensitive to calpro, e.g. with a 7-800 calpro I still have quite low level of overall inflammation as per scopes and imaging compared to others with Crohn's
What would I recommend if you are determined to use some non-medication / dietary / lifestyle options in helping your Crohn's disease?
1. Think about it as an extra tool in your toolbox, that could complement medications as well as potentially stand on its own depending on your personal situation
2. Look at your doctor as a partner, Crohn's is unpredictable, you should keep monitoring inflammation levels, malnutrition levels, any internal damage, via regular blood work, imaging, stool tests, scopes, even if you feel well
3. Start a food and symptom journal and look for patterns, experiment, but be aware that dietary changes sometimes take many days or even weeks to have an effect on symptoms, so try to look at it broadly
4. Be realistic about your goals: e.g. if you have severe Crohn's with fistulas or strictures, you would likely need a lot of time to make a dent, and probably some sort of medication too to complement it
5. Find your own trigger foods, safe foods, and any other things that could be relevant: nicotine? exercise? stress? travel? alcohol? soda? etc.
6. Once you have identified a few safe foods, make sure you try to expand on them, and do not cause yourself to be malnourished, or miss out on any key vitamins or minerals - ideally work with a dietatician and / or doctor, or carefully calculate everything, AI could help make this easier
7. At some point, I would try EEN-s, and dont get desperate if the first one doesn't work out for you as many haven't worked for me - to me EEN is great to do a reset after screwing something up, and get back on track
8. Try to find early signs of your disease getting worse and react appropriately - for me it was in the eyes, for you it might be something else
9. All of this only makes sense if you are mentally disciplined: makes no sense to invest in reading labels, food prep, watch out for all these things, and then throw it all away for a delicious looking food that you already know deep down is going to hurt you and possibly put you on a negative spiral
10. Dont expect perfection: make some conscious decisions ahead of time on where you draw the line between your disease and quality of life: for me, I eat out at a restaurant or drink alcohol maybe once every month. There were times when it was even less frequent. Even these are "semi-safe" foods or drinks and not totally random. This 5% helps me stay on track 95% of time. My mind has adapted to treasuring these moments, and I remember every single one of them. If I was in a mental state that I needed more, I would probably consider adding some sort of medication to help and changing that ratio.
11. Be sceptical of any supplements that promise success
