5 ms·

I was diagnosed with Crohn's disease when I was 13. I was on various 3x-daily anti-inflammatory medications; doctors said I would be on them the rest of my life

by solfox 2y ago

I was diagnosed with Crohn's disease when I was 13. I was on various 3x-daily anti-inflammatory medications; doctors said I would be on them the rest of my life. I started going to therapy as an adult and made a lot of progress in my mental health. I went off my medications 5 years ago and have been healthy since without intervention - I give a lot of credit to this work. I don't think we fully understand the role of the mind/emotions in health; my advice to anyone suffering from IBS and the like is not to forget the mind component to overall health. When you're suffering in your head, it can sometimes manifest in your body. Gabor Maté talks a lot about this connection: https://www.youtube.com/watch?v=1fPQ7Oc44SU https://www.youtube.com/watch?v=1fPQ7Oc44SU

voisin 2y ago
Can you speak more about the type of therapy you undertook? I have a few non-threatening but otherwise annoying autoimmune disorders and my bloodwork, diet, and exercise are all good but have wondered if there is some underlying stress that could be exacerbating things. I’ve considered therapy but honestly have no idea where to start as there are a lot of different modalities and each are expensive (both in money and time) to spend 12-26 weeks exploring with sufficient depth before determining whether or not it “worked” and then trying another. After reading Pollan’s “How to Change your Mind” I have wondered if Psychedelics could be the answer to resetting pathways.
- bwb 2y ago
  You might look at aip diet. It is more gut centric but good results for MS and similar.
- solfox 2y ago
  I think you have to actually try out a modality or two before landing on the therapy that works best for you. Somatic trauma work was truly incredible for me because I was so locked in my mind - but it’s less evidence-based than say CBT which is proven to work for all sorts of mental health. Pollan is great! I’d be happy to chat more with you - send me a PM.
kunai 2y ago
Exercise is also a big one. It can be difficult to exercise when you lack energy, but it's critical for your long-term health, both physical and mental. The bidirectional gut-brain axis is poorly studied but seems incredibly powerful compared to the importance that medicine has traditionally given it.
semi-extrinsic 2y ago
I also have Crohn's, been on anti-TNF and doing well for the past 12 years. I think it's absolutely universally accepted that stress is a major factor in autoimmune and inflammatory disease. Reducing stress by working on mental health definitely has the potential to reduce inflammation levels in some people to the point where you need no medication. But like everything it's not a silver bullet. Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. I've often wondered if there is something of an explanation there for the rise in rate of Crohn's diagnosis in countries as they develop.
- qup 2y ago
  I don't have Crohn's, but I and many people I know experience "not having to take a dump" for various reasons; for me, traveling. The first few days of a trip I usually don't need to go.
- jkubicek 2y ago
  > Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. AFAIK I don't have Crohn's or any inflammatory issues, but boy is this an accurate description of me. My theory has always been that my need to use the bathroom was strongly correlated with coffee and food. When I'm home I'm constantly drinking coffee and snacking, when I'm away from home I'm not.
  - pvaldes 2y ago
    Coffee is a common trigger of the need to use the toilet, yep. It does not happen with other liquids.
- pvaldes 2y ago
  Is interesting. I wonder if this is because in absence of stress, less chortisol is released and the body accumulates less "toxics" by that, at a level that can still manage to clean with common periods of rest. When people sleeps it cleans garbage chemicals from the brain, chemicals that may trigger inflamation. When people with Crohns wake up naturally in Sunday or sleep one hour more, their symptoms for the day would improve? If they drink all night and go to bed at 6hAM on a Saturday, those symptoms would be worse? Just a speculation that came to me after reading the article. I could be wrong, but I would make a interesting test probably IMO.
thrwwXZTYE 2y ago
It's pretty obvious to me that asthma and colitis ulcerosa are stress-related. I had asthma for as long as I remember. I'm allergic to pollen and dust, but one of the triggers is high stress situations as well. I started having symptoms of colitis ulcerosa when I was 18 and had final high school exams. I was under tons of stress. I started to care much less about such things and had years-long remission. There were only 2 other flare-ups - when I was passing driving licence test, and when I had the first big series of exams at university. Basically every time I drove myself very hard I had another episode. And it's not fun to suddenly shit yourself in public transport let me tell you :/ It's been over 20 years since last time I had colitis ulcerosa flare-up. But, in the meantime I was also diagnosed with autoimmune liver disease (PSC), and I'm not sure this one is stress-related. It seems to me it just ticks away at my liver and even very relaxed lifestyle doesn't help. I'm very hopeful about new drugs for this, as the only alternative seems to be to wait for inevitable liver transplant later in life.
- XorNot 2y ago
  I'm very sceptical of "stress related" explanations. They're convenient in the sense they explain nothing. Stomach ulcers were "stress related" until whoops: turns out it's H. Pylori infections, and can be cured easily with antibiotics.
  - binary132 2y ago
    I appreciate what you’re saying, but when the time-linear correlation between a stress event and a GI reaction is very direct and reliable (and often bidirectional) it’s hard not to recognize a connection.
- eszed 2y ago
  As a counter-example (and not at all to doubt your story), I had my first (and worst) UC flare when I was literally the happiest and most content I've ever been in my life. I had my second, a few years later, when I was on a religious retreat, and under absolutely no stress whatsoever! My UC is entirely diet related. A doctor friend and I think we have - as amateurs, mind: his specialty is very far from GI, but he reads and shares with me every UC paper that's published; I have no medical training, but am a motivated auto-didact on this subject - identified three or maybe four etiologies which are lumped together as "UC". The best gastro doc I've seen kinda shrugged, and said (roughly) "probably so, but they all respond to the same drugs in the same ways, so there's not much motivation to draw distinctions". I'm not quite sure what to think about that answer. I do think it's good for patients to identify their own triggers.
thenerdhead 2y ago
Regulating your immune system can mean many things. Gabor Mate and Robert Sapolsky for example just talk about how too much stress can affect your immune system and if you have the genes, you may be more susceptible than others. The good news of all this is that immune therapies are entering their golden age. Hopefully that means in the future you can be cured of these immune based diseases as we find the immune cell culprits like macrophages here.
Spod_Gaju 2y ago
[dead]
0xcde4c3db 2y ago
I recommend being careful with Maté. He's worth listening to inasmuch as he has unique experience and some clearly legitimate grievances with the medical establishment, but he also seems indifferent to the limits of his own knowledge. In my (layman's) opinion he tends to be too credulous toward fringe theories/therapies and to make sweeping, radical generalizations that don't comport with the broader evidence base. For instance, his views on ADHD were called "worse than wrong" by Russell Barkley, who is arguably the leading expert on ADHD [1]. [1] https://www.youtube.com/watch?v=bO19LWJ0ZnM https://www.youtube.com/watch?v=bO19LWJ0ZnM

by solfox 2y ago

voisin 2y ago

Can you speak more about the type of therapy you undertook? I have a few non-threatening but otherwise annoying autoimmune disorders and my bloodwork, diet, and exercise are all good but have wondered if there is some underlying stress that could be exacerbating things. I’ve considered therapy but honestly have no idea where to start as there are a lot of different modalities and each are expensive (both in money and time) to spend 12-26 weeks exploring with sufficient depth before determining whether or not it “worked” and then trying another. After reading Pollan’s “How to Change your Mind” I have wondered if Psychedelics could be the answer to resetting pathways.

bwb 2y ago
You might look at aip diet. It is more gut centric but good results for MS and similar.
solfox 2y ago
I think you have to actually try out a modality or two before landing on the therapy that works best for you. Somatic trauma work was truly incredible for me because I was so locked in my mind - but it’s less evidence-based than say CBT which is proven to work for all sorts of mental health. Pollan is great! I’d be happy to chat more with you - send me a PM.

kunai 2y ago

Exercise is also a big one. It can be difficult to exercise when you lack energy, but it's critical for your long-term health, both physical and mental. The bidirectional gut-brain axis is poorly studied but seems incredibly powerful compared to the importance that medicine has traditionally given it.

semi-extrinsic 2y ago

I also have Crohn's, been on anti-TNF and doing well for the past 12 years. I think it's absolutely universally accepted that stress is a major factor in autoimmune and inflammatory disease. Reducing stress by working on mental health definitely has the potential to reduce inflammation levels in some people to the point where you need no medication. But like everything it's not a silver bullet. Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. I've often wondered if there is something of an explanation there for the rise in rate of Crohn's diagnosis in countries as they develop.

qup 2y ago
I don't have Crohn's, but I and many people I know experience "not having to take a dump" for various reasons; for me, traveling. The first few days of a trip I usually don't need to go.
jkubicek 2y ago
> Another weird/fascinating factor for me at least is that less convenient access to a toilet seems to correlate with less symptoms. When I'm hiking in the mountains I never seem to have a high frequency of needing to take a dump. AFAIK I don't have Crohn's or any inflammatory issues, but boy is this an accurate description of me. My theory has always been that my need to use the bathroom was strongly correlated with coffee and food. When I'm home I'm constantly drinking coffee and snacking, when I'm away from home I'm not.
- pvaldes 2y ago
  Coffee is a common trigger of the need to use the toilet, yep. It does not happen with other liquids.
pvaldes 2y ago
Is interesting. I wonder if this is because in absence of stress, less chortisol is released and the body accumulates less "toxics" by that, at a level that can still manage to clean with common periods of rest. When people sleeps it cleans garbage chemicals from the brain, chemicals that may trigger inflamation. When people with Crohns wake up naturally in Sunday or sleep one hour more, their symptoms for the day would improve? If they drink all night and go to bed at 6hAM on a Saturday, those symptoms would be worse? Just a speculation that came to me after reading the article. I could be wrong, but I would make a interesting test probably IMO.

thrwwXZTYE 2y ago

It's pretty obvious to me that asthma and colitis ulcerosa are stress-related. I had asthma for as long as I remember. I'm allergic to pollen and dust, but one of the triggers is high stress situations as well. I started having symptoms of colitis ulcerosa when I was 18 and had final high school exams. I was under tons of stress. I started to care much less about such things and had years-long remission. There were only 2 other flare-ups - when I was passing driving licence test, and when I had the first big series of exams at university. Basically every time I drove myself very hard I had another episode. And it's not fun to suddenly shit yourself in public transport let me tell you :/ It's been over 20 years since last time I had colitis ulcerosa flare-up. But, in the meantime I was also diagnosed with autoimmune liver disease (PSC), and I'm not sure this one is stress-related. It seems to me it just ticks away at my liver and even very relaxed lifestyle doesn't help. I'm very hopeful about new drugs for this, as the only alternative seems to be to wait for inevitable liver transplant later in life.

XorNot 2y ago
I'm very sceptical of "stress related" explanations. They're convenient in the sense they explain nothing. Stomach ulcers were "stress related" until whoops: turns out it's H. Pylori infections, and can be cured easily with antibiotics.
- binary132 2y ago
  I appreciate what you’re saying, but when the time-linear correlation between a stress event and a GI reaction is very direct and reliable (and often bidirectional) it’s hard not to recognize a connection.
eszed 2y ago
As a counter-example (and not at all to doubt your story), I had my first (and worst) UC flare when I was literally the happiest and most content I've ever been in my life. I had my second, a few years later, when I was on a religious retreat, and under absolutely no stress whatsoever! My UC is entirely diet related. A doctor friend and I think we have - as amateurs, mind: his specialty is very far from GI, but he reads and shares with me every UC paper that's published; I have no medical training, but am a motivated auto-didact on this subject - identified three or maybe four etiologies which are lumped together as "UC". The best gastro doc I've seen kinda shrugged, and said (roughly) "probably so, but they all respond to the same drugs in the same ways, so there's not much motivation to draw distinctions". I'm not quite sure what to think about that answer. I do think it's good for patients to identify their own triggers.

thenerdhead 2y ago

Regulating your immune system can mean many things. Gabor Mate and Robert Sapolsky for example just talk about how too much stress can affect your immune system and if you have the genes, you may be more susceptible than others. The good news of all this is that immune therapies are entering their golden age. Hopefully that means in the future you can be cured of these immune based diseases as we find the immune cell culprits like macrophages here.

Spod_Gaju 2y ago

[dead]

0xcde4c3db 2y ago

I recommend being careful with Maté. He's worth listening to inasmuch as he has unique experience and some clearly legitimate grievances with the medical establishment, but he also seems indifferent to the limits of his own knowledge. In my (layman's) opinion he tends to be too credulous toward fringe theories/therapies and to make sweeping, radical generalizations that don't comport with the broader evidence base. For instance, his views on ADHD were called "worse than wrong" by Russell Barkley, who is arguably the leading expert on ADHD [1]. [1] https://www.youtube.com/watch?v=bO19LWJ0ZnM https://www.youtube.com/watch?v=bO19LWJ0ZnM