Hi everyone... I'll try to stick to the facts because my story has been long. I'm hoping there are some kind souls out there who can read this and give me some pointers. I am running out of avenues.
I'm 30. Been having bowel degradation for years now, since 2008 when I lived in Asia. Had many GI attacks there, from bad food, lots of antibiotics, and vaccines before I went. That year was probably ground zero for what follows.
In the years to come, gradually declining GI functions, until finally diarrhea with blood. Come 2015, I had full on ulcerative colitis. I flared once in 2015, and once again this year in 2016. Both times nearly killed me. I am one of the most severe cases my doctors have ever seen. The only reason why I said no to bowel removal is because I feel in my heart of hearts that there is another way to deal with this. I am not a typical case.
I'm posting this in Adrenal Dysfunction because I have a hunch and I need feedback from the experts here. I just started down the Adrenal research path recently, and rather than reinvent the wheel, I'm coming to you.
This year during near-fatal flare #2, some independent testing I had done found parasites... blastocystis hominis, major candida overgrowth (to life threatening levels), and various other bacterial dysbiosis. The nurse at the lab said my numbers were higher than any UC patient she has seen, and she has worked there for 10 years.
I was on 50mg oral prednisone for some months, and was able to come off it in early July.
Unfortunately, 2 things happened in July that caused major problems. One is that I contracted a bacterial infection called aeromonas. Because I was on a chemotherapy biologic to suppress bowel inflammation, my body couldn't fight it. My guts bled (it's a hemolytic bacteria). I had to stop the biologic to remove immune suppression in order to treat it.
Following that, I did a triple course antibiotic therapy to kill the pre-existing gut infections, based on an Australian protocol for blasto. I won't know if it worked or not for some time. Blasto is notoriously difficult to find in microscopy.
Mid July I got into a car accident. Gave me a concussion, whiplash, and major back inflammation. Since then, my bowel inflammation has just got worse and worse -- I'm not flaring though. Been in bed all the time. Exhausted. Sleeping lots but poor quality sleep. Over all non-stop fatigue. The fatigue is not due to the bowels, the bowels are due to... I'm thinking cortisol depletion. My body has been through so much stress recently and the prednisone taper ended less than a month ago, my adrenals probably have nothing to give.
I'm wondering though if it's possible that my IBD, or at least its severity, has been caused by adrenal depletion?
Here's why I'm thinking that:
- history of party drug use in my early 20's, especially stimulants
- abuse of herbal adaptogens like ginseng and rhodiola in the past (long-term use)
- I had a devastating breakup with my fiance; I cried for a month straight and literally had non-stop panic attacks and anxiety to crisis levels -- trauma to the nth degree that was never treated
- I had a colonoscopy and biopsies performed not long after that breakup; three weeks later I began to have flare symptoms
- I was a student for 6 years in post-secondary in high demand academia that caused me to neglect my body in many ways, and was stressful
- both IV and oral prednisone use, 1/2 the year for two years in a row
- slow healing across the board
- sleeping lots but poor quality sleep, staying awake all night no matter how tired
- a day of physical activity lands me in bed the next day
- emotional mood swings, depression, anxiety, irrationality; poor memory
- ongoing infections (like parasites) and tissue damage that won't heal
- susceptibility to new infections: I'm the first aeromonas case in my region in 2 years, nobody gets it because usually the body fights it off if consumed
- for the past 4-5 years, when I get a cold or flu, I'm flattened... can't get out of bed, and long recovery time; in fact, last year after I overcame my first life threatening UC flare, catching the flu in the autumn re-initiated bowel inflammation
- symptoms worse in the winter and when sunlight is lacking (my most dangerous time)
My body seems to have a disproportional / hyper response to invasion that has got worse and worse since I lived in Asia. Our bodies use cortisol to moderate the inflammatory cascade. Too much cortisol and the immune system crashes; too little and minor injuries become life threatening. Both my UC flares happened following stressful circumstances. My working theory is that I might really have UC, but it's out of control because of a pre-existing adrenal problem, likely developed in my 20's, or maybe even earlier?
The hyper immune system thing has now taken a back seat because it is so depleted. My white blood cell counts are not awesome. They're low end of normal. When I'm on immune suppression, they return to normal. Remove immune suppression, and they decline again. An infection? Or just a totally dysfunctional body? I'm so confused.
So either two things:
1) I have had a sub-clinical GI infection since Asia, building and building, until either my adrenals or immune system crashed, and inflammatory hell broke loose. Most people with UC suffer horribly, but not to THIS degree. During flares it's like my body loses all ability to manage inflammation whatsoever.
2) I have a pre-existing adrenal disorder of some kind that doesn't permit proportional immune system response. Maybe from vaccines. Maybe from genetics. Maybe something else.
I have ruled out lack of probiotics. I have also ruled out lack of anti-microbials. Candida has been significantly scaled back, and parasite counts have been as well. Not sure if the parasites are gone completely because cysts are resilient, but bases are covered in both departments.
What remains to be seen: healing and regeneration of the actual bowel tissue as a reason for ongoing symptoms *or* depleted adrenals making healing next to impossible *or* another hidden cause. Browsing these forums, viral infection seems to be a culprit in a lot of auto-immune disease... but how on Earth would I test for that?
My questions:
- can the inflammatory cascade be eased with hormone replacement?
- even though there are some underlying issues to the UC, like maybe parasites and a history of bombarding infections, could it be possible that adrenal fatigue has now led me into uncontrolled inflammatory disease? In other words, could secondary adrenal insufficiency turn into a primary cause for another disease to relapse?
- I've tried taking DHEA at 25mg/day, and I got negative feedback -- so either the dose needs to be significantly lower, or I'm barking up the wrong tree?
- could prednenolone provide adrenal nourishment if there is depletion?
- what tests should I ask my GP to run, to look into this? (or from an independent lab)
- an odd question, but can head injuries disrupt the HPA axis? I remember reading a paper years ago, before I ever got sick, that said concussion victims can have uncontrolled TNF-a release; wish I still had it
- I'm wondering if, after my car accident, there was enough new injury to deplete what little native cortisol my body was producing, leading to further bowel symptoms?
It's obvious that fixing the underlying UC would help my adrenals, but even last year when I achieved quasi-remission, fatigue never improved... not even after 5 months. I was still stuck on the same limited diet.
I am sorry if my questions have been asked a million and one times. I am currently bed ridden and energy is so limited. I realize that I probably have secondary adrenal insufficiency if anything, but I feel now I'm in a catch-22 position where the lack of adrenal strength is allowing sub-acute inflammation to linger and linger, making me susceptible to even more problems.
I don't want to be stuck on prednisone. It feels like a vicious cycle. The more I use it, the less capable my body is of dealing with inflammation. I am constantly searching for underlying causes to my UC, and now my journey has led me to the wide world of adrenals. A huge topic, to be sure!
Help, advice, starting points, guidance, words of kindness and wisdom -- all very much needed right now. I'm kind of reaching the end of my rope with my health, and we are entering late summer. This winter could be a death knell for me if I'm not careful, and if I don't find some practical, useful answers.
Thank you kindly!
I'm 30. Been having bowel degradation for years now, since 2008 when I lived in Asia. Had many GI attacks there, from bad food, lots of antibiotics, and vaccines before I went. That year was probably ground zero for what follows.
In the years to come, gradually declining GI functions, until finally diarrhea with blood. Come 2015, I had full on ulcerative colitis. I flared once in 2015, and once again this year in 2016. Both times nearly killed me. I am one of the most severe cases my doctors have ever seen. The only reason why I said no to bowel removal is because I feel in my heart of hearts that there is another way to deal with this. I am not a typical case.
I'm posting this in Adrenal Dysfunction because I have a hunch and I need feedback from the experts here. I just started down the Adrenal research path recently, and rather than reinvent the wheel, I'm coming to you.
This year during near-fatal flare #2, some independent testing I had done found parasites... blastocystis hominis, major candida overgrowth (to life threatening levels), and various other bacterial dysbiosis. The nurse at the lab said my numbers were higher than any UC patient she has seen, and she has worked there for 10 years.
I was on 50mg oral prednisone for some months, and was able to come off it in early July.
Unfortunately, 2 things happened in July that caused major problems. One is that I contracted a bacterial infection called aeromonas. Because I was on a chemotherapy biologic to suppress bowel inflammation, my body couldn't fight it. My guts bled (it's a hemolytic bacteria). I had to stop the biologic to remove immune suppression in order to treat it.
Following that, I did a triple course antibiotic therapy to kill the pre-existing gut infections, based on an Australian protocol for blasto. I won't know if it worked or not for some time. Blasto is notoriously difficult to find in microscopy.
Mid July I got into a car accident. Gave me a concussion, whiplash, and major back inflammation. Since then, my bowel inflammation has just got worse and worse -- I'm not flaring though. Been in bed all the time. Exhausted. Sleeping lots but poor quality sleep. Over all non-stop fatigue. The fatigue is not due to the bowels, the bowels are due to... I'm thinking cortisol depletion. My body has been through so much stress recently and the prednisone taper ended less than a month ago, my adrenals probably have nothing to give.
I'm wondering though if it's possible that my IBD, or at least its severity, has been caused by adrenal depletion?
Here's why I'm thinking that:
- history of party drug use in my early 20's, especially stimulants
- abuse of herbal adaptogens like ginseng and rhodiola in the past (long-term use)
- I had a devastating breakup with my fiance; I cried for a month straight and literally had non-stop panic attacks and anxiety to crisis levels -- trauma to the nth degree that was never treated
- I had a colonoscopy and biopsies performed not long after that breakup; three weeks later I began to have flare symptoms
- I was a student for 6 years in post-secondary in high demand academia that caused me to neglect my body in many ways, and was stressful
- both IV and oral prednisone use, 1/2 the year for two years in a row
- slow healing across the board
- sleeping lots but poor quality sleep, staying awake all night no matter how tired
- a day of physical activity lands me in bed the next day
- emotional mood swings, depression, anxiety, irrationality; poor memory
- ongoing infections (like parasites) and tissue damage that won't heal
- susceptibility to new infections: I'm the first aeromonas case in my region in 2 years, nobody gets it because usually the body fights it off if consumed
- for the past 4-5 years, when I get a cold or flu, I'm flattened... can't get out of bed, and long recovery time; in fact, last year after I overcame my first life threatening UC flare, catching the flu in the autumn re-initiated bowel inflammation
- symptoms worse in the winter and when sunlight is lacking (my most dangerous time)
My body seems to have a disproportional / hyper response to invasion that has got worse and worse since I lived in Asia. Our bodies use cortisol to moderate the inflammatory cascade. Too much cortisol and the immune system crashes; too little and minor injuries become life threatening. Both my UC flares happened following stressful circumstances. My working theory is that I might really have UC, but it's out of control because of a pre-existing adrenal problem, likely developed in my 20's, or maybe even earlier?
The hyper immune system thing has now taken a back seat because it is so depleted. My white blood cell counts are not awesome. They're low end of normal. When I'm on immune suppression, they return to normal. Remove immune suppression, and they decline again. An infection? Or just a totally dysfunctional body? I'm so confused.
So either two things:
1) I have had a sub-clinical GI infection since Asia, building and building, until either my adrenals or immune system crashed, and inflammatory hell broke loose. Most people with UC suffer horribly, but not to THIS degree. During flares it's like my body loses all ability to manage inflammation whatsoever.
2) I have a pre-existing adrenal disorder of some kind that doesn't permit proportional immune system response. Maybe from vaccines. Maybe from genetics. Maybe something else.
I have ruled out lack of probiotics. I have also ruled out lack of anti-microbials. Candida has been significantly scaled back, and parasite counts have been as well. Not sure if the parasites are gone completely because cysts are resilient, but bases are covered in both departments.
What remains to be seen: healing and regeneration of the actual bowel tissue as a reason for ongoing symptoms *or* depleted adrenals making healing next to impossible *or* another hidden cause. Browsing these forums, viral infection seems to be a culprit in a lot of auto-immune disease... but how on Earth would I test for that?
My questions:
- can the inflammatory cascade be eased with hormone replacement?
- even though there are some underlying issues to the UC, like maybe parasites and a history of bombarding infections, could it be possible that adrenal fatigue has now led me into uncontrolled inflammatory disease? In other words, could secondary adrenal insufficiency turn into a primary cause for another disease to relapse?
- I've tried taking DHEA at 25mg/day, and I got negative feedback -- so either the dose needs to be significantly lower, or I'm barking up the wrong tree?
- could prednenolone provide adrenal nourishment if there is depletion?
- what tests should I ask my GP to run, to look into this? (or from an independent lab)
- an odd question, but can head injuries disrupt the HPA axis? I remember reading a paper years ago, before I ever got sick, that said concussion victims can have uncontrolled TNF-a release; wish I still had it
- I'm wondering if, after my car accident, there was enough new injury to deplete what little native cortisol my body was producing, leading to further bowel symptoms?
It's obvious that fixing the underlying UC would help my adrenals, but even last year when I achieved quasi-remission, fatigue never improved... not even after 5 months. I was still stuck on the same limited diet.
I am sorry if my questions have been asked a million and one times. I am currently bed ridden and energy is so limited. I realize that I probably have secondary adrenal insufficiency if anything, but I feel now I'm in a catch-22 position where the lack of adrenal strength is allowing sub-acute inflammation to linger and linger, making me susceptible to even more problems.
I don't want to be stuck on prednisone. It feels like a vicious cycle. The more I use it, the less capable my body is of dealing with inflammation. I am constantly searching for underlying causes to my UC, and now my journey has led me to the wide world of adrenals. A huge topic, to be sure!
Help, advice, starting points, guidance, words of kindness and wisdom -- all very much needed right now. I'm kind of reaching the end of my rope with my health, and we are entering late summer. This winter could be a death knell for me if I'm not careful, and if I don't find some practical, useful answers.
Thank you kindly!
Last edited: