I can't explain why I'm writing this, but something is compelling me to do it. I could post this on an IBD sufferers forum, but we all have 'the same' story and I already know the mix of responses I will get. Responses there will start with people offering empathy or sending their prayers. Then one can expect to get the bitter members responding, telling their 'told you so' or 'not surprised' story about how the same medication did nothing for them. So I'm not posting on an IBD forum.
So what is this about. I suppose this is an exercise in...articulating thoughts to a written form, but doing it in a 'public' space open for responses. But this forum also presents a relatively small group of individuals and many here have serious medical issues, and I'm not trying to take away from any of you.
I know there is a member that carries medical grade oxygen tanks for crippling headaches. I know there is another member who has undergone several rounds of chemo for cancer. I'm sure most members here have something that ails them.
I know I've mentioned before that I have Crohn's disease. It's not something new in my life, I've been 'living' with it for almost 23 years now. I say 'living' as many days I have to wonder if this truly is living. Many days it feels like surviving. And I know that sounds dramatic, and many will say Crohn's isn't as bad as some other illness or affliction, but this is the disease that I have first hand experience with.
Crohn's disease is an autoimmune disease, my immune system is attacking my digestive system. This causes abdominal pain, sometimes intense enough to cause me to drop to the ground on my knees grasping at my abdomen until the pain passes. Most of the time I can only grit my teeth and hope that the pain subsides quickly. None of this is an exaggeration.
In 23 years I've taken many different medications. Starting with combinations of 5-ASA antiinflammatories and immuran, which is a general immunosuppressant. Since then my Crohn's has been deemed severe enough to warrant the use of 'biologics', an expensive category of drugs that target specific immune responses and try to suppress them. The first was Humira, which actually worked very well for many years. Humira was the drug that got me through college to earn my engineering degree.
But, while all Crohn's sufferers are different, the 1 thing we all have in common is the knowledge that eventually our medication will stop working. When Humira stopped working, I was switched to Entivyo, another biologic. Which failed within the first year. I am now on Stelara, yet another biologic. If stelara fails, there aren't really any options left.
Last year I had my first real complication from my disease. I developed a perianal abscess which led to the development of a perianal fistula. The abscess had to be drained surgically under general anesthesia because it was internal, and was located between my anus and the tip of my tail bone. If I sat wrong and my tail bone pressed on it, it hurt…a lot.
While they had me on the operating table, the doctors also addressed the fistula. Fun fact, surgical methods to remove a fistula tract have about a 50% chance of working, a coin toss. Most doctors instead opt to install a Seton drain. A Seton is a length of medical grade silicone rubber that is passed through the fistula tract to keep it open and allow the infection to continually drain. I have had my Seton since July of 2021. Many patients have had setons for several years. But it also meant I had to adjust my life again. I now keep a gauze pad between my buttcheeks to catch drainage and must change the pad many times during the day. That said, there is no getting around the fact that drainage will end up in contact with the skin around my anus and causes irritation, which leads to fissures, which often bleed and cause pain.
I say all this to give some history and perspective for the points I want to get to.
Crohn's has no cure. Anyone who says otherwise is selling snake oil. There are many theories as to what causes Crohn's, but that is a topic that is probably best left to another post.
Crohn's disease tends to go through cycles of being active (flaring) and nearly symptom free (remission). Crohn's can start flaring for any number of reasons, and many of those have nothing to do with the sufferer's life choices.
Crohn's is often aggravated by food, so we all learn (the hard way) what foods to avoid. I have not had beans (like pinto, refried, etc.), Popcorn or nuts in over 20 years. I learned early on these 3 foods were not going to 'play nice' during digestion. I don't miss the popcorn or the nuts, but I do miss bean burritos.
Crohn's is also further exacerbated by stress, and this is the real topic I want to get to. I was diagnosed when I was 10 years old. I never really got a chance (in my opinion) to learn how to be a relaxed individual. From a young age my mind became conditioned to worry about what I ate, when the next gut pain would happen and where the nearest bathroom was.
Stress really isn't good even for 'normal' healthy people, and it makes treating Crohn's difficult. I know that I regularly worry about how my treatment is going and how I'm going to feel any given day. This often makes the disease worse, which causes more stress, which…well, it's a vicious cycle. The issue I have is I have no idea how to break the cycle, and I know that it's killing me, probably literally.
Engineering school teaches people to think about a problem or situation from all aspects before making decisions. The stress trap is worrying that there is an aspect or scenario one has overlooked. Combine this with my mental conditioning for anxiety and it's a 'wonderful' cocktail of overbearing stress.
I had a mental breakdown in 2018. I still haven't fully recovered.
I stopped paying attention to news in my childhood when, even at a young age, I realized that the vast majority of news is bad news. Floods, plane crashes, disease outbreaks. As an adult you can't avoid news completely, you will be exposed to it at least to some degree.
As a result of my breakdown, I started taking 300 mg daily of Wellbutrin as an anti-anxiety therapy. This was at my own request when I realized that seeing a therapist wasn't going to be enough.
I know I need to find some way to reduce my stress levels. Reduce my tendency to fall into mental stress traps. But it's hard to break long established habits, hard to rewire ones brain. It's not impossible, just very hard.
Outside of Crohn's, my major stresses that I have identified would be as follows:
I worry that I will die before I finish my two project cars and can enjoy driving them
I worry that I will develop cancer, likely as a byproduct of Crohn's. (Crohn's disease increases the risk of developing colon and rectal cancers)
I worry about the direction the world is headed (this is a more recent thing, starting with the pandemic and now the Russia-Ukraine war)
And I still worry about the climate change crises narrative the media keeps pushing. This one doubly confounds me as I have spent countless hours reading articles, exchanging emails (including emails to a former IPCC scientist who resigned when he realized how political the whole thing was), and I've had many discussions with Mike here. I continue to bring Mike articles to analyze.
I know I shouldn't be worried about CO2, the weather or the climate narrative. I shouldn't worry about it based on the data I have seen and the analysis I have done. But the media is so damned loud and persistent that there is this little 'voice' in the back of my head that says "yeah, but what IF the media, the politicians, the IPCC and the UN are actually right?"
I have no answers for this.
I have no solutions for how to manage my stress.
But I do know I need to do something, and I need to figure it out soon for the sake of both my mental health as well as my physical.
You probably have read this blog entry. Seems like it hits at the core of us all, the microbiome, the seat of our immunity. Besides the gut, every organ has its own micro microbiome. Individual bacteria and virus strains can now be linked to specific diseases. And the role of our prion inhabitants within us is just now being understood to be crucial. Yes, good prions! That are involved in "phase separation".
https://blog.jaminthompson.com/2013/08/20/how-i-cured-my-crohns-disease/
https://www.mdpi.com/1420-3049/27/3/705/htm
https://pubmed.ncbi.nlm.nih.gov/22204435/
https://pubmed.ncbi.nlm.nih.gov/21516743/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7385569/
Mind over matter means much. Or thoughts should never wallow in worry. Woe is not an option. Consistency in devoted meditation, controlled breathing, chanting, humming, yoga and tai-chi movement is said to be prescription. Along with the plant adaptogens that cater to healing. Grappling with this myself. And then throw in trading futures, yikes!
madmechanic,
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This actually goes at the end of the post but I'll stick it here. I actually started this post before hayman's wonderful post but my 96 year old Dad calls me every evening from Detroit, so that he can use his portal and me on my Ipad to pray together and I got interrupted in the middle of the post below.
We've always done Scriptural Rosaries, and the Chaplet of Mercy together but after my visit in late March, he's REALLY enjoyed doing The Stations of the Cross with me together the most
https://www.catholic.org/prayers/station.php?id=1
You may not be religious but I know for many people, praying and for everybody, meditating can provide enormous stress relief.
I'm doing this totally for Dad but after we finish praying together, Mike feels the benefits too.
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Thanks so much for sharing, with another contribution of thoughts to make us think and also looking to connect with others.
You've made many profound points in many areas here, especially on the fake climate crisis but this post could be your best.
You've mentioned your Crohn's disease before too.
All of us are different in our cerebral functioning, education, personality, belief systems, including religion, physical/mental health and so on.
There are no "one size fits all" rules for everybody but sometimes, certain principles applied in our lives can have a sort of universal affect with regards to our happiness or quality of life.
Some people can have alligator skin when it comes to being attacked by others or exposing themselves to public scrutiny or worrying about the many crisis, while some people can be extremely sensitive and gun shy about stating things that will potentially be seen as items which, inevitably invoke potential scorn from people that might disagree or extraordinarily sensitive to anxiety and stress from excessive worrying.
The human brain is the least understood part of the human body, especially when it comes to mental illness, depression and other impossible to physically measure, real conditions that totally dominate some people's brains.
We can measure everything in a person blood and take images of every inch of a persons body but still can't get a handle on neurotransmitter/chemical imbalances in the brain that cause it to think like it does, other than by using the trial and error method on some drugs that help.
If the antidepressant meant to stabilize or increase a certain neurotransmitter in the brain make the patient feel better.............that must be what part of the problem is. If it doesn't help........try the next drug and then the next drug.
There is no test to measure the exact amount of neurotransmitters in the brain and where they should be.
My Mom lost both her parents when still a child and was raised by older siblings, who were struggling to get by themselves and not equipped to be good parent replacements but they did their best but it really messed her up.
She also had a major chemical imbalance in her neurotransmitters. She was manic depressive while we grew up. When depressed, she would drink and sometimes pop pills excessively. There were numerous attempts at suicide. She was very abusive to me, the oldest son who has always been "manic, manic" as I call it.
I was extremely high energy, overactive brain that pushed the limits and broke rules and she was unable to cope and vented on me. I did extreme vandalism, was suspended, then kicked out of school(but my dad got me back in during high school).
I started getting into fights and was in jail for drinking offenses 3 times before my 20th birthday.
In most families, this would have had little chance for a happy ending.
But our family had my Dad. I describe him some in this link below.
https://www.marketforum.com/forum/topic/45623/#45730
I actually had an epiphany of sorts when I started going to AA meetings at 20 years old. I self reflected on my own life and forgave Mom entirely for things she could not control and appreciated her entirely for the times when she gave us love and was happy.
Holding grudges and hatred are the most destructive/negative human emotions of all. Not to the targets but to the person that has the hate.
You can be upset at others for doing you harm or bad mouthing you and always assert yourself and don't take crap but NEVER HATE THEM and NEVER HOLD GRUDGES.
It's not easy and for some, its impossible to flip a switch in our heads that causes us to turn off the emotion hate.
However, if you/we can do it, it's one of the best treatments to lessen anxiety and worry.
When we hate somebody, we totally waste potentially productive time on wishing for bad things to happen to them because thats how our mind defines justice for that person.
MM, I totally am not referring to anything negative in your personality that I have ever detected. When you disagree with other people on the climate crisis for instance, you always do it in a professional way for factual reasons, without expressing hatred or being upset.
Until several years ago, I actually would get pretty ramped up when discussing the fake climate crisis at times.
It probably appears to some that its still that way but not so. I've accepted they have won the battle and tricked mankind into thinking we have a climate crisis.
All I can do is my best to show the truth with authentic science. I even see the very bright side...........that their objective of conserving natural resources is something I am totally with them on.
The only thing that I can do about their hijacking and lying about climate science (my field of expertise) and stealing people's intelligence is to.............speak out with the truth, data, evidence and authentic science and be grateful that a place like this gives me voice.
If I felt hated about this.........that would cause me to be unable to be objective and unable to appreciate the good things about converving natural resources or other positive elements to their agenda.
Their agenda also includes helping less fortunate and bringing equality in many realms, including education, nutrition, fresh water economic and so on.
Yeah, they really messed up and brain washed peoples minds on climate and weather and are telling all sorts of lies about people like me or big oil but I've totally accepted it and am grateful to have a mind that isn't captured and can see the truth and am enjoying the gift of being able to think critically and am blessed beyond anything to have a gift in gaining powerful discernment in any field that I choose to study.
It's clear that you understand some of these principles better than almost anybody because you have to follow them by necessity to manage your tendency to be easily stressed or have anxiety.
The experience of this growing up has given me a solid understanding and compassion for mental illness................and to NEVER judge those that have sincere feelings in their heads that are impossible to control.
Some is situational/environmental, some is biological/genetic. It's often a combination.
I spent a few years helping out(serving meals and donating) at our Evansville Rescue Mission, where probably half of the residents are mentally ill.
Most of society judges these people and holds them accountable to the same standards of behavior that we expect from mentally healthy individuals.
This would be like calling a person in a wheelchair or with 2 broken legs lazy because they won't do manual labor.
Somebody that's mentally ill has a broken brain but its hidden inside their heads, where nobody can see it.
There are 100 different reasons why their brains could be broken or not functioning at optimal efficiency.......but even the doctors can't measure it with their million dollar, high tech tools that can detect most of the other physical flaws.
Psychiatrists and counselors that are trained to recognize it can be wonderful at providing therapy and doing testing that can find good medicines, usually by applying trial and error to see what works best of the well known drugs which have helped tens of millions of others that have similar issues.
In most cases, it's NOT curable. They must be treated for their entire lives.
MM, I would say that your physical autoimmune disease being incurable, means that the mental illness element that goes with it will also be forever.
But definitely not a reason to despair. Instead, at least be grateful that this is 2022 and not 1902 or any of the thousands of years of humanity prior to that.
We both would have been dead awhile ago. Not only are there treatments for everything that ails you(including YOU) to extend and bring quality to your life and make it better, even if not curing it.....but they are discovering even better treatments with time.
I'm not suggestion religion or prayers to you, if your not connected to this already, just telling you that when I do this with/for Dad it brings us both peace.
Part of it for me, is peace of continuing to feel good about giving back to the man that gave me everything and helped make me who I am today(Dad).
This is actually the book that we use:
Which actually brings up another key item for my life.
Spending tremendous amounts of time giving to and helping others.
Being chess coach at 5 schools to 3,500 students the past 25 years has brought more reward and fulfillment to my life than most people have their entire lives.
Mike is the one that has benefited the most from doing this. There's nothing like watching the reaction of a kid when the light goes on in their head in understanding chess concepts and being excited about using them on the chess board.
https://www.health.harvard.edu/blog/volunteering-may-be-good-for-body-and-mind-201306266428
https://www.ableto.com/resources/mental-health-benefits-of-volunteering/
I mentioned hydroxychloriquinn previously, when discussing my autoimmune disease and how it could help you.
my rhumo doctor put me on it last October but it’s not helped.
However, , it might help you As it’s been shown to help with lupus and other autoimmune disorders.
on the anxiety and mental health. getting a dog can be a lift for your emotions. The companionship and love they can give is off the charts. Especially if you’re living by yourself.
some people like cats instead of dogs.
regardless, for many people, there is nothing like coming home and being greeted by a dog that loves you no matter what and just wants to be your best friend all day long.
this current cockapoo that we have is the most affectionate and smart pet we’ve ever had!
25 August 2020
https://www.crohnsandcolitis.org.uk/news/preliminary-trial-of-antibiotics-and-hydroxychloroquine
In their new scientific publication, Professor Jon Rhodes and colleagues report that hydroxychloroquine in combination with two antibiotics, ciprofloxacin and doxycycline, induces a long-lasting remission in some people with Crohn’s Disease.
But how might this malaria treatment help people with Crohn’s? It’s believed that the inflammation in Crohn’s might, at least in part, be due to an altered immune response to bacteria found in the gut. Although antibiotics can be used to try to keep the gut bacteria under control, they don’t always work because the bacteria ‘hide’ inside immune cells. Experiments in the lab show that hydroxychloroquine counteracts the normally acidic environment inside immune cells called macrophages – and bacteria such as E. coli need this acidic environment to survive and multiply.
metmike: HQ is extremely safe, so you have nothing to lose by trying it and potentially, a tremendous amount to gain, MM.
https://www.helpguide.org/articles/mental-health/mood-boosting-power-of-dogs.htm
Most pet owners are clear about the immediate joys that come with sharing their lives with companion animals. However, many of us remain unaware of the physical and mental health benefits that can also accompany the pleasure of snuggling up to a furry friend. It’s only recently that studies have begun to scientifically explore the benefits of the human-animal bond.
Pets have evolved to become acutely attuned to humans and our behavior and emotions. Dogs, for example, are able to understand many of the words we use, but they’re even better at interpreting our tone of voice, body language, and gestures. And like any good human friend, a loyal dog will look into your eyes to gauge your emotional state and try to understand what you’re thinking and feeling (and to work out when the next walk or treat might be coming, of course).
Pets, especially dogs and cats, can reduce stress, anxiety, and depression, ease loneliness, encourage exercise and playfulness, and even improve your cardiovascular health. Caring for an animal can help children grow up more secure and active. Pets also provide valuable companionship for older adults. Perhaps most importantly, though, a pet can add real joy and unconditional love to your life.
While it’s true that people with pets often experience greater health benefits than those without, a pet doesn’t necessarily have to be a dog or a cat. A rabbit could be ideal if you’re allergic to other animals or have limited space but still want a furry friend to snuggle with. Birds can encourage social interaction and help keep your mind sharp if you’re an older adult. Snakes, lizards, and other reptiles can make for exotic companions. Even watching fish in an aquarium can help reduce muscle tension and lower your pulse rate.
Studies have shown that:
One of the reasons for these therapeutic effects is that pets fulfill the basic human need for touch. Even hardened criminals in prison show long-term changes in their behavior after interacting with pets, many of them experiencing mutual affection for the first time. Stroking, hugging, or otherwise touching a loving animal can rapidly calm and soothe you when you’re stressed or anxious. The companionship of a pet can also ease loneliness, and most dogs are a great stimulus for healthy exercise, which can substantially boost your mood and ease depression.
The above says it all and it's very true!!!
Maybe not for everyone (my Mom had an incredible fear of all animals her entire life and even a sweet little puppy that came by her, caused her extreme anxiety) but for our current family, the experience has been extraordinarily rewarding.
First, thank you both for taking the time to, not only read, but also respond to my post. Again, I'm not sure why I felt compelled to write it, but I did.
Second, oh boy have you both given me a lot of topics to 'unpack' or cover, and I have a lot of knowledge and/or thoughts to impart regarding quite a bit of what has been posted. I'm going to have to split this up into multiple reply posts most likely.
My intent was to respond to Hayman first, but Mike's posts about antibiotic therapy for Crohn's has that topic fresh in my head so I'm going to start by addressing that. In my next follow-up post I will respond to Hayman, as there is A LOT to talk about there. (All good stuff)
Ok, so, there are many theories as to what causes Crohn's or contributes to it's development in individuals. When I was first diagnosed (age 10) I was the ONLY person in my family that had any form of IBD (Crohn's or UC). One theory at the time was that it was caused by milk that hadn't been pasteurized properly. I dismissed that theory relatively quickly because, as I figured it, everyone in my family (Mother, Father, Brother) typically had at least 1 glass of milk from the same gallon jug every time we bought milk, so why would I be the only one who ended up with Crohn's?
Another theory stated that Crohn's was the byproduct of modern standards of sanitation. This theory said that the human body (and the immune system) evolved to expect a certain amount of 'junk' to be ingested from the environment like bacteria and viruses. With the advent of modern sanitation (washing hands, toilets, toilet paper, etc.) the body has had less and less exposure to environmental intruders, but the immune system still expected to 'see' the evolutionary levels of foreign bacteria/viruses and therefore became analogous to the bored security guard with an itchy trigger finger: the immune system was practically looking for an excuse to attack something.
This theory made more sense to me at the time as there was generally very low incidence of Crohn's in developing countries with low quality of sanitation.
After a few years with the disease I asked my GI doctor if medical science had a better idea of what caused Crohn's, he told me that they still had no idea, but they had the statistical evidence to say with confidence there was at least a 40% genetic predisposition to developing Crohn's, and that the percentage was likely higher than that but they didn't have the numbers at the time to confirm it.
Within a couple years of that conversation, my Grandfather on my father's side would be diagnosed with Ulcerative Colitis (UC). About a year after that my father was diagnosed with UC. At that point I knew there was, without doubt, a genetic component to this disease. There was a clear genetic lineage in my family for IBD.
Now, fast forward to present day. There has been a lot more research into the causes of Crohn's and one of the theories right now is that it is caused by a bacterial infection. Now, this theory isn't widely accepted but it has gained some traction. When Dr. Crohn first categorized the disease around 1932 while working at Mt. Sinai Hospital, he postulated that the disease was likely caused by a bacterial infection, but at the time no particular bacterial strain could be identified as a culprit.
Right now there is a growing body of research that claims Crohn's disease is caused by the 'MAP' bacteria. MAP is an abbreviation for "Mycobacterium avium subspecies paratuberculosis". Yes, this bacteria is part of the same family of bacteria that causes tuberculosis. What makes this bacteria interesting is that it causes a disease in cattle that is incredibly similar to Crohn's disease in humans. The cattle disease is called Johne's disease.
This whole line of research is difficult because a MAP bacteria infection is incredibly difficult to test for in humans. MAP bacteria doesn't cultivate well in petri dishes like most bacteria does. However, there is a doctor in the UK (Prof. Hermon-Taylor) working on this who claims to have developed a test for MAP infection that works with humans AND his research has shown at least 92% of Crohn's patients do in fact have a MAP infection. At least according to his test.
So how does MAP go from cattle to humans? Well, the 2 most common pathways are infected meat and infected ground water. Prof. Taylor is working on what he is boldly calling a Crohn's Cure by way of a MAP vaccine. His website can be found here: https://crohnsmapvaccine.com
His research and claims have generated a lot of controversy in the medical community. I suspect many of us Crohn's sufferers are losing hope in his claims as it has been several years now without any real update on the research.
However, there have been patients who have responded well to antibiotic therapies to treat their Crohn's disease. So much so that Red Hill Biopharma (a biopharmaceutical company founded in Israel) has been working on a prescription cocktail of antibiotics that they are currently calling RHB-104. It has already undergone FDA clinical trials in the USA and is currently undergoing FDA review for approval. Information on RHB-104 can be found here: https://www.redhillbio.com/our-programs/pipeline/rhb-104/default.aspx
So...Mike. I'm not surprised when I saw your post and link about a doctor treating Crohn's patients with a mixture of antibiotics and hydroxychloroquine. This is another example of treatment along the same lines as Dr. Taylor and others.
Even I was first treated with Flagyl antibiotics when I was first diagnosed, so it's not an uncommon first line treatment, at least 20 years ago.
Member Hayman,
First, thank you for taking the time to respond.
I haven't seen this specific blog you linked (for Jamin Thompson); however, after reading through his post, I have read several blogs very similar to his.
That being said, what sets his apart from many others is his objectivity and his understanding that every sufferer is different and what works from one person often doesn't work for another.
He is absolutely correct that diet plays a role in Crohn's. Medical science is still researching and debating how much of a role diet plays. Meanwhile, there are some outspoken patients who claim that diet is the ONLY thing that matters in the treatment of Crohn's.
What I like in his blog with regards to diet is that he did his research and is trying a diet based on what he feels is the correct diet for his disease. In the meantime he is accepting that modern medicine helps to control the disease, so combining diet and medicine is (in my opinion) a smart 2-pronged approach.
I have read FAR too many blogs and web articles from people who vehemently claim that Crohn's can be cured through all kinds of dietary and/or holistic approaches. These people will often also claim that because it worked so well for them it WILL work for 'YOU' (IE everyone). But that's not the case. as Mr. Thompson pointed out, take any specialized diet that is purported to help Crohn's disease and you will find just as many cases of people saying that diet worked wonders for them as people who said it didn't help them at all (or even some people who said the diet made their disease worse). This is why it is so dangerous for ANYONE involved with this disease to make any umbrella claim that something that worked for them WILL work for anyone else.
I've spent many hours researching Crohn's diets. I've seen people who swear by the paleo diet, or the SCD diet, or the IBD-AID diet (which is really just a modified SCD diet plan), also diets like going vegetarian, vegan or the other extreme and going to a high protein diet. I am currently working with a nutritionist and she has me on a diet plan with increased levels of protein intake. In her own words and experience, protein (in the form of things like meats and butter) is the resource the body needs to heal. I guess it's a good thing I like chicken (although she is not restricting what forms of meat I ingest, so I do enjoy a good steak now and then).
Some of these diets even have medical studies to 'back their claims', but if you read those studies you will find that often the group of patients that responded well vs didn't is only a slightly higher percentage.
Now, I've had a conversation with my GI doctor about diet and the gist is this. The current medical science cannot recommend any one diet over another, and therefore will often take a stance that "diet doesn't matter". This is a bit misleading and I think needs to be reworded. Really I suspect medical science does know that diet makes a difference but because there is no 1 diet they can recommend they really need to say "diet matter, but you the patient still have to figure out what works best for you".
Lastly I will touch on his recommendation for relaxation techniques and mindfulness. It is well documented that a large percentage of Crohn's patients report feelings of depression, and to varying degrees. I have gone through plenty of bouts of total hopelessness.
His suggestions of things like meditation, mindfulness techniques and yoga are recommended in a lot of patient blogs and articles. In fact, the CCFA (Crohn's Colitis Foundation of America) recommends these techniques and practices on their website.
To be fair and honest, I'm sure these techniques would help me, and I have no excuse for not giving them a try, I just haven't motivated myself to start yet, and that truly is my own fault. However, with how my mind works, I keep thinking that if I can rationalize a conclusion to certain topics (like say climate crises narrative) then perhaps I can put my mind at ease and that will help me start to relax. Perhaps I have this the wrong way around and I need to really start practicing mindfulness, yoga and meditation and those will in turn help me to come to terms with the things that cause me worry.
MM,
I figure you have a MUCH better understanding of the antibiotic connection than me by an extremely wide margin.
However, my point with the study that was shown earlier was the HQ angle to the treatment.
You've tried tons of other things and are still pretty messed up.
HQC is dirt cheap and has extremely low risks and has a proven track record of helping "some" people with autoimmune diseases.
I'm not one of them being helped but you might be.
When the rhumo doctor suggested it late last year, he thought he would have to convince me of its safety, saying that for the last 30 years, he always had patients taking it the entire time with no side effects.
The fact that he continues to prescribe it that much, tells me that he's continuing to see benefits with autoimmune diseases treated this way.
I chuckled when he was doing this though. I studied HQC for much of 2020 when it was a hot topic for treating COVID.
Here's the discussions on that for your further review. I'd said all along that if the HCQ didn't help me with COVID, I'd take it anyways for my autoimmune issues and got me wish.........but it didn't work.
Looks like I started earlier than though last year:
I'm taking hydroxychloroquine
Started by metmike - Oct. 16, 2021, 3:29 p.m.
https://www.marketforum.com/forum/topic/76287/
Ok, third response post for now, and I want to cover companionship (people and pets).
So...Mike. You have posted a lot about the mental virtues of various things like mentoring, conversing with others and owning a pet.
As far as mentoring, I've often wanted to mentor younger folks who have an interested in tinkering with cars. However, this is likely to be an increasingly dying interest (at least as I see it) as electric cars become more prevalent to combustion cars. Also, there is an unfortunate trend of the current youth generation that they really only care about the latest greatest gadget, gismo or car and don't care about older things.
Now, to clarify a couple things (probably things I haven't really discussed before). I am married (have been for 2-1/2 years now), so I don't live alone. My wife brought 2 dogs (beagles) with her into the relationship, however, I'm more of a cat person. So about 2 years ago I adopted a cat, so I do have a cat. That said, I don't know how much enjoyment and calm these pets have brought me. If anything I've found myself getting more wound up by them, but admittedly in the wrong ways.
An example of this would be my cat. She is a cat, she acts like a cat and does cat things, I wouldn't expect any different. There was a day where I had a glass of water on my desk and the window of my home office open. My cat was at the window enjoying the sights and sounds and smells, until she heard some noise outside that spooked her. She bolted off the window sill, right across my desk knocking over my glass of water in the process. This caused a 'knee jerk' reaction and I exploded with curses and yelling. Once I calmed down I realized this was the wrong reaction to have on many levels.
First, she's a cat, she's gonna do cat things and have cat reactions. second, it was a glass of water, grab some towels and soak it up. If it ruins my keyboard in the process, buy a new keyboard and move on. I don't buy expensive keyboards anyway. If my clothes are wet, go change my clothes for some dry ones. Everything in this situation was not a big deal, it was a moment in time and did not warrant the response it elicited from me. My cat ended up hiding under the bed and I ended up encouraging her out with some treats and softer words. She has forgiven me but it's an example and a reminder that I need to accept that stuff is going to happen. Also, lashing out, even verbally, towards an animal can end up conditioning them to not like you over time, so it's not healthy for me and it's not good for her either.
I have similar issues with the dogs if I'm honest. Admittedly, I tolerate them at this point because they are both old (13 and 15 respectively) and they are set in their ways. It's not like I wasn't around dogs growing up, but the cocker spaniel my parents had when I was growing up was the sweetest, most gentle dog I've ever been around. She never growled at anyone or bit anyone, and she rarely barked. She was incredibly well trained, you could tell her to sit and stay and she would stay with her butt planted until you told her to come. So I grew up expecting all dogs to behave like that, and the reality is that most dog owners don't take the time to do any obedience training with their dogs, and my wife certainly didn't with hers. So this is a rough learning curve for me. Plus they are beagles and they howl as beagles do, at pretty much anything. I prefer a quieter house, it's just who I am, so for them to start howling breaks my calm and quiet. They often won't stop howling until someone (like me) gets up and tells them to stop.
I also want to take a quick moment to mention a couple things about my wife. I love my wife, but her childhood and family was very different from mine. She grew up with 2 brothers and a sister. I only had my brother. In my family, if my brother or I got sick, my mom would make an appointment with the doctor and we would be seen. In my wife's family, it was more of a "walk it off" philosophy. It's not that her parents didn't care, they did, but they had a different way of approaching things.
This has lead to a learning curve for both of us. She is trying to learn how much of her 'walk it off' philosophy she can apply to me and when she needs to back off and give me time to rest. Crohn's takes a lot out of a person, mentally and physically. And I'm having to learn when to tell her I need a break or when to tell her I can't attend some family function because I know I won't enjoy it. This alone leads to friction because she feels that "if he would only get out of the house he would feel better" and I'm on the other side going "I just spent a solid hour in the bathroom voiding my bowels, the last thing I feel like doing right now is being social."
I also get bitter at times because she and her family (brothers, sister, and parents) are all healthy people, no one in the family has any sort of illness. So what I deal with is totally foreign to her, she has no basis to begin to understand.
Thanks MM!
I'm glad you expressed your positions on these items.
As I mentioned, everybody is different and everybody can become different as they age.
For me, that especially relates to pets.
My Mom was petrified of ALL animals and hated many of them. We were not allowed to have pets except for turtles and fish(and I got a parakeet one time because it was in a cage).
In back of our house was an alley and several times a week, there would be a vicious cat fight in the middle of the night that I could hear in my room at the back of the house.
It sounded EXACTLY like this.......EXACTLY!!!
https://www.youtube.com/watch?v=vEvvRfuVk30
Never having a cat for a pet and hearing these scary sounds in the middle of the night and hearing my Mom's views about cats caused me to intensely HATE cats for many years.
I was messed up and mean to cats because of these experiences and did something horribly abusive to one in early college that could have killed it(at 3am, when drunk, I put it in the kitchen oven and turned it on with this dorm mate that professed his hate for cats all the time). Fortunately, I heard somebody coming from down the end of the hall and let it out while it was still ok.
After that, I vowed to always be nice to cats the rest of my life.
When I married, my wife already had a dog and a 5 year old daughter. She was gone all day and just locked the dog in the bathroom with newspaper on the floor and it was never poddy trained properly.
After we married, the dog would crap in the house all the time. I would scream and yell like a maniac at that poor dog and maybe hit him a few times when I drank too much.
My wife has always picked all the pets, cars, houses and every item of furniture in every house we lived in and actually, most of the clothes that I wear. Honestly, It's from not being materialistic. I like to live cheap, environmentally and make her happy.
When she's happy.........I'm happy.
However, I picked 1 pet. We got a German Shephard because I wasn't getting home from the tv station until after 11pm and I'd already had a male stalker, vandalize my car, break into a previous apartment(steal my dirty underwear) , burn it down after that and I had somebody shoot at my car on the way home and the bullet hit the roof of my car, 6 inches above my head.
I carried a gun with me for protection and we had a shot gun at home but there is a 0% chance that she would have ever used it..........so I got a German Shephard to protect her when I wasn't there. Then another one after that one died.............mainly for protection but the kids really liked having a pet too. I think that it was worth it just because of how much the kids liked those dogs.
The 2nd one lived a long time and the last 6 months lost control of his bladder and bowel and I was the one that cleaned the messes several times a week EVERY time, as well as fed him and took him outside, since I worked from home trading then.
I warned my wife and kids for 6 months that I was putting him to sleep because I was spending several hours each week giving him a bath, cleaning his crate and the house(if we put him outside, he would bark and howl constantly because he'd been a house dog all his life.
I was really sad the day I did it but then, the next day mad at myself for not doing it months earlier. My wife and kids were furious with me for weeks but I decided...........NO MORE PETS.
That's when our youngest, then 17 begged, now 31 to get a cat, along with my wife. Finally I agreed. Not the best cat ever but I loved not having to take it outside. We could go on vacation for a week and just leave it food/water/litter. That's my kind of pet!
It's also puked in the house hundreds of times and we have dried puke everywhere that still needs to be cleaned.
When the cat dies, I will be sad for a couple of days about it, especially seeing how it affects my wife but also see the bright side of it being gone and we will NEVER get another cat EVER. OK, if my wife adopted one, I would give in again.
Then, around 6 years ago, she wanted another dog. Our cat is extremely temperamental(and to this day, still hates the dog-that tries to play with her) and I insisted, no way because of the cat.
A good buddy was going thru a very tough divorce and having remorse about things he could have done to save the marriage and I was telling him about reasons for me to NOT give in about getting a dog.
I remember him saying...."you should let her have a dog!"
At exactly that moment, it gave me this unique view of seeing the dog from my wife's perspective and not mine(from somebody that wished he was in my position to make the wife that was divorcing him happy) and I immediately agreed to get the dog to make her happy!
OMG! This has been the dog from heaven. I described my experiences with other pets above, so you know that I've never been a huge pet person. This dog/cockapoo is so smart and affectionate and obedient/loyal and sweet.
I won't go into all the details unless somebody wants me to.
Macy sleeps in the bed with my wife(I sleep on a mattress on the floor) and Deb wants me to promise that if she dies, that Macy will sleep with me. Never gonna happen.
Anyway, Macy will look out the window all day waiting to see Deb's car on the street in front of the mail box, when she gets home. Then she goes bezerk! Like if a human won a million dollars in the lottery (-:
Watching this and how she greets Deb makes it my favorite time of day too.
I've joked to Deb 100+ times "good thing I talked you into getting another dog (-:"
MM, 10 years ago, I would never suggest another person get a pet. I didn't want another pet. A pet different than Macy and I probably would still feel that way.
With regards to the in laws, we borrowed a bunch of money in 1991 to buy her parents a house. Again, her idea because I never cared about money, except to have it make her happy. This was one of the most wonderful, unselfish things anybody has ever done for anybody............she gets 100% of the credit and I'm proud of her for thinking of the idea, even though I made all the arrangements for it to happen and fixing up the house for them with additional money, paying the taxes and insurance on it until recently(we gave it to her youngest brother who lives there and is taking care of her mom there)
I've done alot for her mom thru the years too so her family puts me up on a pedestal.
My family is extremely fond of her too. In fact, I think my siblings like her more than they do me(seriously, especially my 3 sisters). They probably realize what she had to put up, knowing what I was like in my younger years and I am extremely fortunate to be married to somebody like this considering what an idiot I still was when we first met.
Lucky for me, I was a good looking, competitive body builder and tv celebrity with a big personality and could have basically picked anybody I wanted.
But I was still a shallow, selfish person in many ways and lacked in many qualities that make us good human beings.
Debbie was already well on the right path to being a good human being.
I recognized this in her from the very first time we met and it's why I fell in love with her immediately.
Interestingly, she had very few of the physical traits that attracted me most to the opposite sex.
Appreciating these things today is part of the joy in my life!
If they had turned out differently, would I look for other things to be happy about?
Probably.
Happiness is a state of mind that we have some control over much of the time.
Maximizing that control is the key to a quality life. It means adapting to all the bad things as best possible and focusing on the good things as much as possible.
All while balancing it to function effectively with wide open eyes/brain in the REAL world.
With regards to teaching chess to 3,500 students, that too was not my idea at first but just by sheer luck, I backed into something that blossomed into this incredible dynasty of helping young people develop their brains.
I would never have thought up the idea of starting chess at a school.
I had played, maybe 100 chess games in my entire life and was really good at it.
I was the chess champ for my jail cell (with 5 other inmates) in Tawas City MI where I spent 3 days for my 2nd DUI at 21 years old, 1977? with an already suspended drivers licence. It was those 3 days before I got bailed out by a friend. This was 180 miles north of Detroit at a friends cottage on Lake Huron and my parents didn't know.
They played chess all day and the champion was like the "king' of the cell.
That experience and my dad's help actually caused me to go to AA meetings every day for a month to have the judge go easy on me with my sentence and it worked.
Instead of 90 days that the prosecutor asked for(I had several reckless and careless driving convictions on my driving record), I got time served AND he actually reduced the charge from drunk driving to impaired driving because he was so impressed that I went to an AA meeting every day for over a month.(on my own but actually my Dad's idea).
While at the AA meeting to stay out of jail...........I learned more in 1 month than I had in the previous 20-21 years about myself, thru an intense self evaluation of my life, behavior issues and alcoholism and using my dad's example, never giving up on me.
Anyway, the chess part of being in jail is hilarious. The other 5 guys thought that I was some sort of chess God because I was so good.
Fast forward to 20 years later, 1997, with my 2 boys playing chess at Scott School and me coming early to help out the very sick chess coach.
The chess coach suddenly died towards the end of the season and I knew immediately that I was meant to do this.
I was already coaching their soccer, basketball and baseball teams and was the den leader for both of them in Cub Scouts(and teaching religion ed at our church) so it wasn't as if I had no clue on how to be a coach or teacher. Actually, I loved it.
But all those other things are a distant memory and honestly, though they enriched my and others lives 20 years ago, when my kids were growing up, if I didn't do all those things, another dad would have been there to do every single one of them.
However, for chess, it's extremely likely that there would have been no chess at any of the 5 schools I do chess at for the last 25 years.
I mention this, not to boast but instead to share the amazement and blessings bestowed on me to be in such a wonderful position.
How many guys, applying for their first job as a volunteer chess coach at an elementary school, would have listed on their resume "Chess Champ at the East Tawas jail in May 1977" (-:
I see it's still there too!
https://iosco.net/government/sheriff-department/
The Iosco County Jail
The Iosco County Jail is operated as part of the Iosco County Sheriff’s Office. The facility is in Tawas City, Michigan. This facility has been serving this community for more than 50 years. The jail has a rated capacity of 63 beds and provides inmates with the best supervision possible.
Mike,
Since you were an AA attendee, you must be familiar with the serenity prayer.
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.
I was not aware of this mantra until after my mental breakdown had started. Now, I have never really been a drinker, I've never been drunk or had a DUI nor have I attended a AA meeting. I only know about this mantra because my boss at my last job saw that I was having trouble coping with things that were beyond my control.
I often forget that it exists, but when I do remember it I try to recite it as best I can. I like to think that it will help me in some small way to, as it says, accept the things I cannot change.
I am not a religious person. I grew up in a Presbyterian house with my mom and dad going to church every week, she still does but my dad stopped going many years ago. I was typically forced to go to church because I was too young to stay home alone.
I did complete the church's confirmation class but decided not to confirm my faith, the only person in my class to make that decision. Honestly, I had more people in the congregation compliment me on having the courage to be honest with myself and not confirm as I felt it wasn't the right thing to do.
I say all this to explain why I often try to reword the serenity prayer just a little to remove it's religious overtones. Something like this.
Find the serenity to accept the things I cannot change,
The courage (or strength) to change the things I can,
And the wisdom to know the difference
Exactly MM!
Our youngest son got my brain chemistry and if he has one drink can end up on a 1 week binge.
He has tested above .47 BAC (5 times the legal limit) in the hosptical on 5 different occassions and was conscious and talking each time when he came in.
Last July, when I brought him in, at .48 and told them what he was there for and that he was probably around .50, every single person there thought I was nuts.
Almost everybody would have passed out long before getting close to that level and many go into a comma. It's especially dangerous because if he passes out at that level, his respiration is so suppressed that he can just stop breathing.
He doesn't like AA or programs like that because he's an atheist. However, the key would be to apply messages exactly like you just did.
He's been doing great since that last incident and we have high hopes for him.
I've been able to do extremely well without support groups but they are of tremendous value to most people that have issues of all sorts, including you.
With regards to black outs.
I had a black out every single Thu, Fri and Sat night my 2nd semester, sophomore year at the University of Detroit. The first did I did every Fri, Sat, Sun morning was run to the front window to see if my car was there, then call my friend to hear about what I did.
I got 5 A's in my classes at school that semester and used that to justify that I didn't have a problem and could do what I wanted(I was still drunk for my Fri am classes).
It was a year later that I landed in the Tawas City jail and went to AA meetings that gave me the insight into who I really was.
I still abused alcohol for 20 more years(as a functional alcoholic) but knew fully, that I was an extreme alcoholics brain.
In fact, the night I met my wife the first time at a bar(where she asked me to dance) I told her I was an extreme alcoholic.
Her response was "no way! you're a celebrity with a good job and competitive body builder and healthy!"
Anyway, MM, I like your mentality in this last post about applying the serenity prayer to your thinking.
It doesn't need to have anything to do with God.
Everybody is different.
There are MANY to MOST people in AA that need the support group atmosphere and God as a sort of crutch in order to keep from drinking.
I was never that way. I actually, learned what I needed to learn during the many May/June 1977 going to AA meetings.
The meetings tune me in. Listening to other alcoholics spill their guts.
Bright people, 20 years old than me with totally messed up lives from drinking.
Many of them said the same thing to the only young guy there.
"If only I knew what I do today when I was your age"
But its never TOO LATE to learn anything.
Once you learn it for the first time, at that point, you can start applying the lessons.
I expanded on that on my own. You can teach yourself the same principles with independent research or you can figure them out on your own.......and have them be just as effective!!
But somehow, something has to happen for you to see it clearly for the first time to open your mind to allow new, helpful information in!!
You as in people in general not YOU, madmechanic!
I've found YOU to be extremely objective/open minded and extraordinarily analytical, rooted in fact based realities when it comes to self assessment areas!
I had to add one more thing.
My Mom was afflicted with and gifted with something at the same time that she called "active mind" in the 1960's/70's that I received genetically and my younger son has.
It was the root of her manic/depression and abuse of alcohol to self medicate. Even with the best meds of 50 years ago, she had extreme insomnia.
When she was sober, she would stay up all night reading books because her mind was constantly racing "active brain".
When she was happy, it amplified her joy and it turned manic.
When she thought about sad things(her childhood) it amplified her sadness to an extreme and she even attempted suicide numerous times.
One of her brothers (Uncle Joe) and his wife stayed with us here in Evansville in the Summer of 2000, when I was staying up all night trading grains.
Uncle Joe, who had a totally different mentality than Mom, was also up all night reading books. I found this fascinating. He told me that he'd always been like that his entire life "active brain" syndrome.
It was then, that I realized how powerful the genetics were.
I used to have severe insomnia and would lay in bed with my mind racing much of the night reliving and seriously analyzing one thing after another. This is why I was so attracted to alcohol, starting on that very first drink. Same with our youngest son that takes after me genetically.
Acohol turned down my(our) over active brain and that felt really good. There are millions in our country like this.
Luckily, I've had a wonderful life in recent decades and surrounding myself with all positives and taking several meds has resulted in being able to channel the active brain into countless constructive things to help others and feel rewarded.
I describe myself as manic-manic(without the depression). I can drive my wife bonkers (others too at times) when she's trying to wind down and I'm wound up and don't stop talking and analyzing things.
MM, I sense that you also have an (over) active, analytical brain based on your wonderful, astute observations and assessments. That type of brain(like mine) can amplify mole hills into mountains very quickly because there's an unlimited amount of cerebral, high octane fuel to add to every situation that inevitably amplifies some of the worst scenarios.
In our heads, we have nothing but our own thoughts with no outside force or "governor" to reign them in or keep them from exceeding the boundaries which take us into the realm of unhealthy thinking and even mental illness.
And it feeds on itself. As thoughts drift into an extreme nature, there isn't always a protective, negative feedback mechanism......just the opposite. Once those thoughts occur, it makes similar thoughts easier because our brain has already reached the point of contemplating them...........now, it has a launching point to build on additional extreme thoughts based on the exact same mentality.
Mentally stable and healthy humans are naturally very subjective and loaded with cognitive bias to begin with. When you add mentally destabilizing thoughts in with a person that has an over active mind, it can blow up into extreme worry/anxiety and a mental breakdown. My mom had a few of those too.
Having an ongoing life challenging and life threatening disease is a challenge for any person. It's even tougher with the type of brain described above.
Mom had some physical issues but was a huge hypochondriac. This went along with her active brain. Every single physical issue, was greatly amplified in her head..........turning mole hills into mountains.
MM, you have legit, life threatening issues and I am not saying you're a hypochondriac. It's good to discuss them here. But an active brain like yours, makes it that much tougher to obtain the mentality which allows you to stop dwelling on it all the time. I strongly get that vibe from you.
Lucky for me, I grew up with a Dad who never complained one time about anything in his life. It's one thing to read about somebody like this and try to duplicate a trait of near perfection and another to actually grow up with somebody displaying that behavior which, in our subconscious, causes our brains to accept it more easily into your own life.
Sorry for the long dissertations..........it's just the product of how my racing brain works.
Mike,
You are correct in your assessment of my brain type/chemistry. My mind is always thinking about something and often gets fixated on one topic or another. One of my mental health self help books refers to this as 'ruminating'.
It is often difficult to get my brain to turn off at night and I often don't sleep well. I regularly worry about my Crohn's disease among other things.
Unfortunately (I say that sarcastically), I have zero tolerance for alcohol, I pretty much always have. So I can't even try to dull my mind with alcohol. This is probably for the best though.
Be extremely grateful that you've never been attracted to alcohol.
There really are some great meds to help balance your neurotransmitters/brain chemistry and sleeping issues.
I've been taking 100 mg of Doxepin for almost 30 years. Helps with sleep and also the physical pain that I have in numerous areas. It will make you feel cloudy headed the next morning until you get used to it.
Some people just can't get used to it. I take it several hours before bedtime so it doesn't affect my mental clarity in the morning.
https://medlineplus.gov/druginfo/meds/a617017.html
Trial and error with different meds could help you discover one of the many dozens of meds that allows you to sleep better.
My wife was having frequent panic attacks over a decade ago when our youngest son was having serious problems related to his drinking and the law.
She went on Lexipro and it worked wonders for her mental health, sleeping and anxiety issues but it stifled her creativity.
After several years, she cut the dose in half, then eliminated it completely a year later.
The extreme anxiety/panic attacks did NOT return. She has managed to do very well for the last 6 years, unless our youngest son is on a week long drinking binge.