Crohn's Disease & TMS - Inflammation vs. Oxygen Deprivation

I’ve posted bits and pieces of my ongoing saga on these forums before, but I feel like I’ve hit a bit of a wall with the treatment of my lower back pain and am hoping for some guidance or shared experiences that might help. I’m entering my 11th year of this struggle, and am having some of the darkest days I’ve ever seen. It takes everything I’ve got just to get through the day. Every aspect of my life has been crippled by this – social, financial, professional, physical fitness.

History:
· Happy/normal childhood, supportive family – diagnosed with Crohn’s age 6
· Intermittent joint problems throughout adolescence, including a few bouts with low-back pain in my early teens. Periodic need for Prednisone to control IBD, which unfortunately combined with malnutrition from Crohn’s to severely stunt my growth.
· Age 23, low back pain becomes persistent/debilitating, lasting about a year. Discover Dr. Sarno, become a patient, banish pain 100% shortly thereafter.
· Quickly develop severe panic disorder, textbook case of the ‘Symptom Imperative’ - 2 years before I can conquer it.

Fast forward to my early 30s, and the back pain returns – with a vengeance. None of the techniques that helped me win the battle a decade earlier seemed to have any effect. My brain is screaming out for a solution and punishing my body in the process.

Eventually I begin to listen to the doctors that are telling me my back pain is the result of inflammation related to the Crohn’s Disease. I still can’t fully accept this since my gastrointestinal symptoms do not coincide with the back pain. That is until

my gastroenterologist recently informed me that out of the approximately 30% of Crohn’s patients that deal with chronic low back pain, just about 100% of them experience that pain independent from gastrointestinal symptoms. So I had it completely wrong. I feel like that way of thinking was helping me to accept that 100% of the cause is psychological. It kept me convinced that it was a separate issue, though that approach hadn’t worked, I was still clinging to the concept.

Prednisone, for all of its evils, remains the only ‘treatment’ that has a truly significant impact on my pain. It is magical – the first few doses wipe out 95% of my pain. My doc believes that the TMS exacerbates the existing inflammation.

Dr. Sarno maintains that Crohn’s itself is a manifestation of TMS. He also told me that my TMJ was TMS as well. I have trouble buying these two assertions because I was grinding my teeth as a toddler, and was diagnosed with the Crohn’s at age 6. I just don’t see a lot of repressed rage developed at that age. However, I have most definitely noticed that the Crohn’s is exacerbated by emotional trauma. As a matter of fact, on several occasions, a stay in the hospital has followed major emotional events in my life.

Here’s the bottom line – does it really matter if it’s the inflammation from the Crohn’s or oxygen deprivation or vice-versa? Just to have the experience of a man in a white coat agreeing that this is all TMS, I went to see Dr. Sarno’s disciple, Dr. Ira Rashbaum. He agreed that it was likely TMS. Yet for all of my intellectualizing, self-awareness, and constant reminders that the pain is within my power to eliminate – I remain in constant agony. I can list 30 reasons why my brain might want to create a distraction in the form of back pain. Acknowledging these things is not working. I am actually sick of reading about folks that have cured their chronic pain after a 40 minute conversation, like the ones in Adam Heller’s book, “Zero Pain Now”. I know it is supposed to be helpful but at this stage it is just annoying. I’ve done the psychotherapy, but it’s not helpful for me.

I have tried everything I can think of. What else can I do? Is this pain persisting because there is still a lingering doubt somewhere in the back of my brain that is unsure that this time around is 100% TMS? I don’t think so, but if that is the case, I just don’t know any other way to shut this mechanism down before it kills me.

Anyone have any ideas? IF you read this far, you must have an opinion! Thanks.

 

Interesting post, you sound like 90% of the people who contact me. There's several incongruent things but all in all typical. You don't see yourself through a clear lens but you certainly have some great insight on other things. You also write well, and express yourself goodly.

The mechanism doesn't matter, inflammation, oxygen deprivation, etc. that's all true but who cares? You are too locked into body consciousness. There's great anxiety there but the good news is you can feel much better. The symptoms are not uncommon but you're stuck in the same spot that most are.

You definitely have doubts on whether it's TMS, but who doesn't? The doubt persists for a reason, which is because you need to doubt.

Deeper understanding (light) heals everything, but wherein doth thy looketh? "A man sees what he wants to see and disregards the rest," and you can never find what you don't want to find, however in your case you're looking, which is a good sign. You'll find your way, you just need to know what's really going on. In searching for answers you are TMSing. So what are you seeking? Answers or peace?

SO

 

Interesting question. I think I've given up on finding peace for the time being, because there's none to be had while the pain persists. I seem to be overflowing with 'answers', but none seem to get me closer to eliminating the underlying mechanism that fuels the TMS. Yet I still can't seem to dedicate myself to certain daily habits that I know will be beneficial, i.e. meditation, careful & diligent stretching, improved posture, etc. The same personality traits that brought on the TMS are working against me, and in many ways have been magnified. For example, the more time I spend on my back and out of commission, the harder I try to 'catch up' the moment I feel a little better. This seemingly unbreakable pattern is obviously a losing strategy, because I wind up further down the rabbit hole after I overdo it. Inexplicably, my 'to do list' can still often take priority over activities like the ones mentioned above. The real addiction is not steroids or pain killers - it's productivity.

As you mentioned, I have some pretty good insight about what's going on and have no problem identifying potential causes for the pain. When I successfully banished the pain before, acknowledgement was enough. This time around, it's not even making a dent. I think that is what's producing the doubt - if consciously I believe it is rooted in the psychological, and that belief has done nothing to reduce my pain, then perhaps there is an element in there that's beyond my control. I consistently evangelize Dr. Sarno's teachings to everyone I encounter that suffers from chronic pain, yet have no good answer when someone asks why I've been unable to cure myself with the same methods.

The only choice I have is to heal myself; there is no doctor that is going to get me through this. Yet I feel like I don't have any weapons left. It's a very helpless feeling.

 

I had my first migraine headache when I was 4 years old. Over 50 years later and much suffering from frequent migraines, I discovered the concept of TMS. I have completely eliminated migraines using a TMS treatment approach. It took me about a year. So I believe I started having TMS at 4 years old. As I began to journal about it all, it made perfect sense. I was taught to repress emotions at a very early age. So I wouldn't let your age at the time of symptoms lead you to believe it couldn't be TMS.

 

It's a tough sell. It feels like a long way from oxygen-deprived muscles to severe malnourishment or blocked intestines requiring emergency surgery. I get that many mind-body disorders are the result of our basic survival instincts going haywire (i.e. panic attacks & fight or flight), but I have to think that my unconscious mind would stop short of killing me over repressed stress. At the end of the day it is a question I'll never know the answer to, so it makes little sense to obsess over the distinction. What's important is that I do everything within my power to make sure I don't exacerbate the condition with dumb lifestyle choices.

When I mentioned that I’d found myself in the hospital after emotionally traumatic events, there were other factors involved as well. Also, these events were most definitely in my conscious mind, which at least in my case appears to be completely separate from unconscious stress. Over the last decade I’ve noticed no discernible difference in the quality of my pain when I experience what most people classify as stress - bad day at work, relationship troubles, etc. When I successfully banished the back pain the 1st time around, recognizing that my personality was on every page of Dr. Sarno’s book & simply accepting the concept was enough. Since then I’ve gained a much greater understanding of the reasons behind the repressed stress.

This is what frightens me the most - I don’t think there is anything left to figure out. I have a tough time eliminating the self-talk that fuels parts of the process, but I’ve learned to let them go. I’ve accepted the diagnosis - the doubt creeping in recently is just a product of my complete failure at treating it as TMS up until this point. I’ve done the journaling & psychotherapy. The ‘distraction’ that is supposed to be the main goal of the pain doesn’t really work, and honestly at this point I struggle to understand the purpose of the TMS. What else does my unconscious mind think it can accomplish by maintaining this state of chronic pain? The original response mentioned that I was too consumed with body consciousness. He is right, but what other tools are there to battle a mind-body disorder that refuses to respond to anything?

 

Years ago I attended a group meeting by a TMS doctor, prior to the meeting I sat in a waiting room with a fellow who was very busy cramming as much work in on his cell-phone with his briefcase open on his lap, prior to the meeting. At the start of the group session, during our intros, he mentioned his issue was Chrons. I had no doubt seeing that his T-personality, played a big role in it. Since you saw Dr. Sarno and Dr. Rashbaum, I assume you live or work in NYC, do you ever consider that your environment could be fueling your symptoms?

 

Have you read Dr. Gabor Maté's When the Body Says No? If not, I recommend it. He discusses the role of stress in a wide array of physical health problems including in chapter 11 Crohn's and ulcerative colitis, but you should read the whole book.

 

I left NY 25 years ago to head out west. Partially because I realized even back then that the lifestyle & built-in stress that goes along with surviving in NY wasn't for me. I'm not that guy you describe, but I used to be. My current environment is about as stress-free as possible. Aside from the stress and anguish that results FROM the TMS, there's nothing in my present-day life that contributes to it. Am I depressed because I am no longer able to participate in activities I enjoy? Of course. But that's the chicken after the egg....if my back pain vanished and I could resume an active lifestyle and feel well enough to re-engage with the world socially, that depression would disappear instantly.

 

I'll give that a look; thanks. Although I have to admit that lately I have a very hard time with reading. It is as if my ADD has gotten steadily worse, and I have trouble concentrating on anything for more than a few minutes. Add that to my rapidly declining vision (3 new prescriptions in the last year), and reading is just unpleasant. I spend so much time at the computer that when I'm finished for the day my eyes need a break. That's no excuse though, I have much reading to do.

 

I was unaware of your ADD. I hope you can stick with When the Body Says No long enough to get to the final chapter on "The Seven A's of Healing." It is excellent.

If you like When the Body Says No, you might also be interested in Gabor Maté's Scattered: How Attention Deficit Disorder Originates and What you Can Do About It. He writes from the perspective not only of a physician who treats ADD but also as a person who is ADD himself. Part Six of the book is titled "The ADD Adult." I have not read that part because my interest in ADD is only because I have two young grandchildren with it, but I would expect that part to be of the same quality as the earlier parts of the book. It seems to me there are commonalities (both genetic and experiential) between the origination of ADD and the origination of stress-caused physical health problems.

 

For your vision issues I recommend you look into the works of Dr. Roberto Kaplan, he is TMS complementary :

http://www.eye-see-life.de/beyond2020vision-english/ (English - Eye-See-Life Institut)​

 

Hi Eightball, not sure if you'll read this, but I was reading your posts and feeling for you and what you were going through, and how frustrating it can be to be told its TMS, especially when you have something like Chrohns, which is a bit beyond the usual remit of TMS.

I was just wondering if you made any progress in the past few years since you posted this, and hows it all going?
Thanks

 

Thanks for checking in. While it's hard for me to do too much celebrating, both because of my nature, and because I'm dealing with another frustrating medical problem that remains un-diagnosed, my TMS-related back pain is much better. My leg doesn't "shut off" after walking a block, and the torturous sciatic pain down my leg that was numbing my foot and responsible for so much agony is virtually gone. Now I still have some pain & stiffness in my back, but it's more due to inactivity & being out of shape & spending too much time slumped over a computer...and it's nothing like it was. Is the dramatic improvement the result of more attention to TMS-fueling behaviors & patterns, and noticing when I'm clenching those muscles in my lower back, or from taking Humira for the Crohn's? I'd be hard-pressed to call it a coincidence that the real improvement came a couple of months after I got back on Humira, exactly the amount of time it's supposed to take to kick in. The systemic inflammation from the CD was no doubt a big contributing factor. Exactly how much of my LBP was from that vs. TMS may remain a mystery...but I think the majority of it was the Crohn's. I just had some blood drawn & will be able to check my inflammatory levels soon...If they're much lower as I suspect they will be, it'll get me closer to the answer. Before the Humira kicked in, I was having all-over joint pain...felt like an arthritic 90 year old. Now, my anemia/energy is much better, digestive system improved (I'll spare you the poop details), and the all-over joint pain is better as well. Most importantly, I think that if I can build up some endurance & strength, (and solve this frustrating heart fluttering issue that's preventing me from higher impact exercise), I have a chance at returning to some of the activities I'd been away from for so long.

One thing's for sure - I'm really glad I didn't opt for surgery, because there's no doubt at all it would have been the wrong decision.

 

Thanks for the update, wow thats amazing you managed to make such progress with pain. I read that you had huge relief with pain a long while back with the TMS approach, but then lost your faith in it a bit, understandably.

I know you're chrohns started when you were very young. Do you believe in any way that it could be caused by emotional stuff on some level? Some sort of subconscious stuff that sends the nervous system sideways and then in turn the immune system?

Its hard when talking about something as serious and 'physical' as chrohns, by that I mean not just pain and tension that hurts but doesnt do any real damage. But I'm just interested

 

This was the one area in which Dr. Sarno & I disagreed. He did imply at one point that Crohn's could be a TMS equivalent, but all of the childhood trauma that doctors like to point to as fueling these kinds of problems later in life just wasn't there. I was incredibly lucky to have loving parents and an otherwise normal/happy childhood. Sure, it sucked to have to spend days I'd otherwise have wanted to be with my friends in the hospital going through invasive tests, or dragging myself to the infirmary at summer camp to take my meds 3x/day. All of that stuff didn't phase me as a kid, but did it catch up with me later in life psychologically? You betcha. Yet I just can't find any source of emotional trauma before being diagnosed at age 6. Somewhere in my 30s I finally identified a pattern where major flareups always seemed to coincide with some emotional trauma, so the same kinds of things that fuel TMS most definitely exacerbates the Crohn's. Despite still having limited treatment options & no cure, this has been well-documented. I've gone through several "biologic" medications over the years, and there's been a huge difference since finding one that works. Has it brought me remission? Not exactly. I'm still constantly battling anemia, generalized joint pain, fatigue, and all of the fun times that come with autoimmune disease. There is a good reason that upwards of 80% of Crohn's patients deal with chronic back pain, depression, and anxiety...Combine systemic inflammation with the psychological impact of having a chronic, incurable illness, and dealing with all of the ways that impacts one's life is no small thing. It's made me who I am, and given me a perspective I am grateful for. I'd still trade just about anything for a life without it, but accepting the limitations it has placed on my life and what I can do with it is something I'll struggle with until my last breath. So ... my point here is that Crohn's and diseases like it are almost guaranteed to develop TMS-like problems. Dr Hanscom's "Back in Control" helped me understand this a little better...how you can suffer from TMS pain even when there is an underlying physiological problem that was developed without any connection at all to psychological issues. Trying to distinguish between the 2 can drive you crazy... and it was ... until I finally accepted that the 2 can co-exist, and you have to treat them both at the same time. So it really just means that it's more important for me to take care of my physical and mental health at all times. I'm hyper-sensitive to any disruptions....don't get enough sleep, do too much physically, eat crappy foods, etc. - does more damage to me than others, and I pay a much higher price when I slack in any area. Feeling sick or dealing with terrible pain, as most in this forum can relate... makes it that much harder to make the right choices in all of those areas. It's really hard to resist shortcuts sometimes - too much pain to stand in the kitchen & cook/clean, order takeout ... or to rely on meds to fix fatigue or insomnia...but as long as I don't beat myself up about it too badly when I falter, I can have a better today. As long as I don't spend too much time regretting the past or wallowing in self-pity or ruminating over all of the things I've been unable to accomplish because of these limitations....I'm ok. It's hard sometimes to look at all I've accomplished in spite of it. Still working on that one. So back to your original premise ... Crohn's is without question exacerbated by stress, repressed or otherwise, including the day-to-day kind that comes from the lifestyle stuff I mentioned...but the cause... bad luck + genetics + environment + diet (before knowing better) + some "X-factor" researchers have yet to uncover.

 

Hello friend, I stumbled across your post via a search. Hope you are doing well today.

My story in short is that I identified some big time pain and anxiety issues about 9 years ago and was able to successfully eliminate them via the TMS method (as a last resort lol).

As far as Crohn's goes, I was "diagnosed" when I was in 7th grade. The doctor was 90 percent sure but wanted to do a colonoscopy still to be sure. After a couple of years of extensive testing and two colonoscopies, the doctor finally conceded that I in fact did not have Crohn's Disease and that it was actually a minor miracle in his mind based on my anal related symptoms. The tests only found polyps and hemorrhoids.

In short, after all of that I noticed a chronic swelling of my anus started to develop (usually after bowel movements). The doctor dismissed it as hemorrhoids, but honestly it never really went away up until this day. It basically just became a chronic issue that I have dealt with for 20 years since it is only a minor inconvenience with the occasional anal fissure maybe once every 1-2 years from a large bowel movement.

But now I'm curious since I'm now 31 years old if this is something I should revisit at the doctor or just accept as a TMS symptom. I don't really have any big issues that most CD people have other than the anal swelling thing that is chronic.

I will say that during the time in my life when I was almost diagnosed with Crohn's I was going through puberty and struggling to fit in at school and be myself and all that jazz. And I already know I very much have the T personality from my past bouts with TMJ, anxiety, groin pain, etc.

Just curious what you and others thoughts were on this

 

I think even Dr. Sarno would agree that a thorough evaluation by specialists in the field can't be a bad idea. Diagnosing Crohn's can be tricky in some cases, and I hear stories all the time about UC that's misdiagnosed as Crohn's and vice-versa. My diagnosis was never in doubt, as hard as I tried to find a TMS-ey explanation for awful joint pain, abdominal cramping, wasting/malnutrition/weight loss, fatigue, etc. at age 6. They certainly wouldn't have pumped me full of steroids if there were better options at the time. I just got out of the hospital where I spent a few days with a partial obstruction, coming out with a fresh recommendation for surgery. When you look at my CT scan, it looks like someone detonated a bomb in my colon... all of the strictures & narrowing aren't fixable with TMS therapies unfortunately. The whole insidious process has no doubt been worsened by my personality type & repressed stress later in life, but it didn't come from TMS. The same things that lead to successfully treating TMS can also treat Crohn's.

My CT scan also mentioned "Degenerative Disc Disease", which I laughed at because I know what I know about that....

You know you're prone to these kinds of ailments, so by now you should be able to reach some level of comfort with the coexistence of symptoms that are connected to TMS & 'others'... You can drive yourself crazy trying to identify & separate each, feeding our OCD-like perfectionistic tendencies, or accept that they are leaves from the same tree and the existence of one doesn't necessarily preclude the existence of the other. It's a difficult nuance to explain to people, especially those who are defensive or skeptical of the diagnosis in the first place. The ones who would hear an accusation if you suggest their symptoms could be related to psychosomatic sources, invalidating the rest of her suffering. I have a good friend doomed to spend the rest of her life in the back pain / migraine industry relying on experimental medications with terrible side effects and suffering from terrible depression because of misdiagnosis after misdiagnosis. It breaks my heart that I can't even suggest it to her.

You're already more than halfway there. You don't always need to identify it for sure as 100% TMS to heal. Let a pro help you treat it, and add the TMS stuff to your toolbox. Good luck.

 

Hello, I came across your post whilst looking for positive / learning stories to help my daughter's young friend (20) who is suffering terribly from Chrohn's - in and out of hospital and has taken over everything. However in coming across your post I found myself wanting to maybe share something from my own experience. But first, I want to say I hope so much you are doing well, and that things continue to improve, as they really seem to have through this thread. And sending you lots of support for the journey you are on, that so many of us have been on in different ways.

I myself had on and off very bad back problems in my 20s, and then a horrendous debilitating time with my back when I was 39 where for 2 yrs I lived in terrible pain and could not find my way out of it. At the time, none of the drugs helped and made me feel worse (luckily perhaps); surgery was proposed but I read about such poor outcomes and decided not to (so glad I did not); NHS (in UK) waiting lists for steroid injections and pain management help were about 7 months long (again maybe luckily). So stuck in bed and with 2 young children that I LONGED to be playing with again I eventually found my way to TMS and other mind body ways in to pain, and to hope! I could write a lot more about that journey out of severe pain but there was just one thing I wanted to share here in relation to your post (in fact it's made me join the network after all these years) just in case it is helpful in any way. I have no idea about the cause of Chrohn's as don't know enough about it. And also as you say some things ARE physical in origin after all. But also as you say, the one thing I have learnt is that stress can and will make any physical expression and experiences worse. And, the converse, tackling that has the power to make any physical things much better, whatever you or we have! And it is the only bit - how our mind responds - that we actually have any real control over. So once on that path, at least we are central to our own journey. However the thing I wanted to say about that is that strangely enough, the 'control' thing is then also something to look at. Or rather, I think stress is also about where the mind is in the driving seat all the time (and I am speaking of myself looking back and the tendencies I still have now): questioning, obsessing, trying to work things out, all this IS still stress. And the things that most helped me were things that actually found ways into that. My brain has the tendency to be always thinking, (over thinking) worrying, trying to work out, questioning, comparing.. But this IS stress! Even if the subject is TMS and trying to work out a way out of pain. For me (and just passing on in case helpful) the more helpful things were when I started to do meditation, and yoga, and ways to be in my body in the moment, and I guess also verging on the spiritual: letting go and trusting. Not because there is a higher being who will sort it all out! But because holding on and holding tight (just think how that sounds for the body) makes things harder than letting go, going with (already physically better). I don't know if this is helpful or not, but it has been such a profound learning in my life that I wanted to say it here. I am STILL rubbish at doing a regular daily meditation practice. OK so I am! Instead I have found a group I meditate with every couple of weeks (mindfulness or insight meditation) which I find helps to then keep that awareness in my mind: am I over thinking? Am I in the moment? Am I holding on too tight? Because no matter what is happening in our lives, letting go into the moment helps. I feel it in my body. It is very, very, VERY hard to do when you are in extreme pain. Although, that moment is also a doorway (as I found) because sometimes in those moments it can feel so desperate, there is nothing else. I read John Kabit-Zinn's Full Catastrophe Living when I was lying on the floor every day unable to walk my children to school, and that was the start. Anyway I am rambling on, but what I mean is even letting go should not be a pressure: finding a group can help or ways that are pleasurable for you. For me being in nature massively helps. I have an allotment and whilst it looks pretty crap, and I don't do lots, I go there and be with the things growing and dying and coming back again, and the bees and the birds, and it helps. None of this was accessible to me when in big pain, and I can remember when people suggested it I felt really like "ffs!'. But, as I found my way out of that dark place, yes, all of it now helps. There is lots more I could say about this letting go that has helped. I also did some almost CBT around pain thoughts (when my thoughts were really compulsive around the pain - every moment is it better? worse? what is causing it? Have I gone in to all my past angers? etc etc - which is a form of stressful thinking) and this very much helped to0. helped me to see when my thoughts were going round the same circle, and actually keeping me locked in. None of this is to say that I think this is a solution to Chrohn's (which I know nothing about and am trying to find out more!) or to anything else. But I do know that it helps, it helps anything. So I wanted to share it here. I am 54 now and still on the journey.. and really do thank (god? the universe? myself?) for the things that have helped. And I also do not forget how terrible it is in the worst of pain and that it could feel worse, if you also feel that you 'should' be solving this yourself (ie TMS becoming yet another pressure) which could become a whole new layer all the time. I think you have done AMAZINGLY with all you have coped with and do and I am very happy that things seem to be better than they were.

 

By the way, just to add: just realised it sounds like I am saying YOU are doing all these things, which I have no idea if you do or not. It was just I recognised that mind searching and it reminded me of all I have been through and done. So sharing only in case it chimes with anyone

 

@ICRS Thanks for sharing all of that. It is helpful to be reminded of the many forms stress can take. While I am very good at recognizing the connections between emotional trauma and pain, and can usually separate chemically-induced mood changes (damned Prednisone) from natural ones, the inner dialog from the perfectionist inside is still doing damage. It's like an inmate digging out of a stone cell with a spoon...little by little it chips away at my self esteem, keeps me from experiencing true joy much of the time, and worst of all, provides fuel for the TMS. No matter how hard I try to turn envy into gratitude or focus attention on what I've accomplished in spite of the limitations, it is impossible to truly silence the inner voice of the ambitious overachiever who's locked up with a life sentence inside my head, with nothing to do but berate the real person who's allowed sickness and pain to destroy every dream he's had, constantly ruminating over missed opportunities, regrets, and the awful feeling that it is simply too late to reverse the damage. Allowing those thoughts to run though my head 24/7 is like pouring gasoline on the fire, and it's manifesting itself in ways that are indistinguishable from "normal" symptoms of Crohn's Disease, because they are one and the same. It's not a TMS process that's creating 'harmless' symptoms part of a completely reversible process, like anxiety or neck pain. It kick-starts the autoimmune engine that generates that systemic inflammation, wreaking all kinds of havoc & making all of those terrible worries to life as I spend another year trying to "get healthy, so I can XYZ" ... Now too many of those years have gone by, and I'm back at the starting line once again. OK, I've written too much now, but anyway... good luck