Inflammatory Bowel, Brain, and Body

[bobh]

We have unique situations. I don't expect anyone to have the same baggage that I do. Just curious if any of you have recurring "Brain-fog" and wipe-out, chronic fatigue type symptoms.

To some extent, people with "D" can suffer from mal-absorption, which will make you feel depleted. My scene is more complicated, I got a "drop-dead-flu" type illness back in 1986 and have had recurring fatigue ever since. Within a year I also developed recurring "D". In the 1980's, the "Yuppie flu" "Chronic fatigue" was a common complaint. My blood test at the time found high levels of the Epstein Barr virus, so I know it wasn't just in my head.

Articles on Chronic Fatigue show images of the brain during a flare-up, with regions that show different colors indicating inflammation. Personally, I have recurring episodes where the ability to concentrate is "gone". You feel like the flu, synapses don't "fire". The Dr tells me that the inflammation is real, and it is like having a water-logged brain. Achy joints etc. usually accompany this auto-immune problem. MC is also auto-immune.

Again, this may not be the baggage that ANY OF YOU carry. My explosive "D" was halted 2 months ago after going on Meds for the first time - and I am enjoying normal, formed stools daily. I also "felt good" for the first 45 days. But lately the fatigue thing is flaring up, and the familiar "walking dead" symptoms just won't go away. (at least I am not "running" dead, to the toilet, thank goodness). (I guess you could say I am "grateful dead").

I am bothering you with this post, because my fatigue-wipe out got eliminated in one day after seeing my Dr yesterday. It is a "turn on a dime" change for the better, and I just want to share in case it helps others. I am sure it will be controversial, so I hid it in the Medical forum: http://www.perskyfarms.com/phpBB2/viewtopic.php?p=30832

As I mentioned in that post, quietly mentioning the word "Prednisone" is kind of like shouting FIRE in a crowded movie theater. People are going to have some sort of reaction to the word.

I truly respect those who can handle ALL their body problems with diet, and hope that some day, I can maintain a remission of my symptoms with diet alone.
Update of November 6, 2006: the benefit I was getting from the Prednisone only lasted 2 days - then felt rather awful with head pressures and "brick-headed". Saw my MD today, and I am off of it. As noted on other threads, the Pred helped halt a flair for me 2 months ago, I am going to stay off of it now.

[hazel]

I'm just glad you're feeling better. That constant fatigue can really wear on a person. I think meds are a vital part of health care--its their over-use that is the problem, or the under-use of other alternatives. Heck, half of us would probably be dead already if not for anti-biotics. By the way, that's a literary use of the word half, not literal!

[tex]

Hi Bob,

I'm glad you're getting results that make a difference in a hurry. Brain fog is miserable to live with, and is one of the worst parts of an MC reaction, in my opinion. (I have to admit, though, that brain fog can't hold a candle to uncontrollable D, in the competition for the absolute worst symptom).

I read your other post in the "Meds" forum, and your father is quite correct. While most doctors seem to take the use of Prednisone rather casually, there are significant risks with long term usage, which is probably, (but not necessarily), dosage-dependent. Osteoporosis is only one of a myriad of problems that can come with the long term use of Pred.

I'm kind of curious: Your Dr. figures that you are operating on approximately a half dose of the cortisol equilavent of Pred., which would mean that approximately 3 and 3/4 mg of Pred would be needed to supplement that underproduction. So why is he prescribing a 15 mg daily dose, (four times the amount needed)?

More is not always better, expecially with a drug that has serious long-term risks connected. Maybe he figures that it is only about 25% absorbable. I have no idea about the relative absorbtivity of Prednisone, compared with cortisol that is naturally produced in the body. Granted, 15 mg of Pred. is a very low dose, but it is certainly not an insignificant amount. It will have long term effects. Presumably, he will take that into consideration, at the one-month evaluation point.

Tex

[mle_ii]

Hey, excellent post Bob. Not sure where to comment so I'll comment here.

I talked a bit about this here:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4832

But it is rather interesting to hear about his connection to Cortisol as well. I've thought about getting it measured as my ND mentioned it before, but for some reason I never thought much about it. Until you brought up the issue again. I too have been having this foggy feeling daily, even right now I can feel a bit of it coming on. At one time I thought it might be related to blood sugar levels. Well the scientist in me got a blood glucose testing kit and well, it didn't fit. So perhaps it is cortisol.

You did mention that he said it's difficult to measure, but have you had yours measured? I think there's basically a 24 hour urine collection that you do to measure it.

Very interesting indeed and thanks for bringing this up again. What is also interesting that you might have missed when I brought it up is the connection with bile and Vitamin D. Hmmm... Yep, there I go again. ;) These are all tied together with cholesterol.

Thanks,
Mike

[mle_ii]

Ok now this is odd. According to a comment in this study:
http://www.grupoaran.com/mrmUpdate/lect ... =RVN&Eng=0

Budesonide gives an overall treatment result approaching that of prednisolone but without the suppression of plasma cortisol levels.

Perhaps this is the reason for a higher dose for prednisolone? I wonder why the pred instead of entocort/budesonide for you? Interesting.

[mle_ii]

Well, look here.

Heightened responses to stressors in patients with inflammatory bowel disease.
http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum

CONCLUSIONS: The heightened response to the stressors and the greater epithelial damage in IBD patients suggests that stress-induced activation of the BGA and of mucosal MC is important in the initiation and/or flare up of IBD.

Does cortisol help regulate our stress response? Thus if we produce less of it that is stress heightened during stressful times?

[mle_ii]

Ok, this is not so good now. With regards to Cortisol and IBD, it doesn't appear that levels corelate to disease. Though it does appear that stress can bring about or prolong IBD.

http://gut.bmjjournals.com/cgi/content/full/54/10/1481

I really wish I knew more about how receptors worked. For example, from what I understand the taking of certain drugs can cause an adaptation of the cell such that it takes more and more of the drug to have a similar effect. What is going on here? Might this be part of the disease/inflamation? This is one area I can't quite wrap my brain around.

Mike

[bobh]

I'm kind of curious: Your Dr. figures that you are operating on approximately a half dose of the cortisol equivalent of Pred... So why is he prescribing a 15 mg daily dose, (four times the amount needed)?

I was wondering the same thing this morning. I will ask him when I see him, and post his answer here. During my Dr visit yesterday, I had not yet cleared up some of the terms he was tossing around. So I had sort of a deer in the headlights mentality (not to mention the brain fog I walked in with).

It has been another 1/2 day since my post this morning - and something definitely changed for the better re: my brain fog. Now that I researched the words he was using, and have Mike's references, I can try to find natural alternatives or at least have a better understanding of the phenomena.

I wonder why the pred instead of entocort/budesonide for you?)?

Well, I walked into his office yesterday and was already on entocort/budesonide - and it was doing a GREAT JOB of maintaining the remission that we FORCED into place with a short-strong jolt of Prednisone 2 months ago. That was the first time in my life I had ever taken ANY steroid, and I was leery of doing it. But it worked, "BAM".

As you know, Entocort is a delayed-release steroid that is focused on the gut. It is a "lesser evil" steroid in that it is NOT supposed to be absorbed and distributed through the body. It's anti-inflammatory magic only works on the bowels. So if you walked in with a bad asthma attack or allergic reaction to a bee sting, they give you Prednisone. It "goes everywhere", and that is what we were looking for on the "brain inflammation" which is a very, very real problem for me. As noted in my Med post this morning on Prednisone, I have tried MANY "natural" and health alternative therapies - this was my last resort.

My Dr wants me to stay on the Entocort, see how it goes with the added LOW DOSE of Prednisone. I understand that many people are able to "cycle off" the steroids based upon symptoms. My Dr mentioned that if the inflammatory conditions in the rest of the body (in addition to the bowels) seem to benefit from a low maintenance dose of Prednisone, we should be able to cut back on the Entocort in the future - as the low dose Pred should maintain the remission. Again, I would prefer to avoid a systemic steroid, but have other problems in addition to the bowels.

Mike I am thankful that you posted some useful info, I did read it when you first posted it - but was too ignorant of the terms to really understand it. After yesterday's Dr visit, I spent 1/2 a day clearing up what Cortisol is (naturally occuring in the body) and what Prednisone does, etc. I get confused when Cortisol is described as reducing immune response - but I know my Dr said that it is the UNWANTED AUTO-IMMUNE activity that the steroid drugs target.

I will follow up on your point, of how to get some of these levels checked. When I see my Dr I will ask about them. Until then, all I can say as far as not getting those levels checked - is that I have done TONS of blood-urine-stool-etc. tests with this Dr, to various labs, and he often uses that data but ultimately relies on real-world symptoms and what worked. My brief, initial 10 day round of Prednisone to halt an IBD flair 2 months ago had the ADDED BENEFIT of knocking out 100% of my brain fog, joint pain, etc. So that was sort of a test result by itself. Now I am off to research some of the goodies you linked to...

[tex]

Hi Bob,

Regarding the dosage level of Prednisone that your Dr. prescribed, I think that Mike hit the nail on the head with his observation about Prednisone's tendency to suppress plasma cortisol levels. Prednisone tends to pretty much "take over" many body regulatory processes, so it will need to supplant virtually all of the normal cortisol production that your system would otherwise produce, thus the higher rate.

And, you're correct, of course - Entocort wouldn't do what you need done, if your cortisol output is too low.

On the downside, while it is true that doctors prescribe Prednisone to target unwanted autoimmune issues, unfortunately, there's a collateral effect. Prednisone has no way to determine the validity of an immune response, so it tends to suppress all immune system functions in general, though possibly to varying degrees. IOW, it is definitely an immune system suppressant.

Incidentally, thank you for all the information you've given us. You've opened up a whole new area of interest. It's pretty clear by your experiences that if one's system has been "on the blink" for an extended period of time, and refuses to respond to "normal" treatments, it may take a "jolt" to get it back on track. You've also demonstrated how extreme cases may require "out of the box" thinking, to resolve all the issues - further evidence that even though we may all have the same disease, and/or the same or similar issues, we're all different enough that there will probably never be a "one treatment fits all" in the future of MC.

Tex

[bobh]

...It's pretty clear by your experiences that if one's system has been "on the blink" for an extended period of time, and refuses to respond to "normal" treatments, it may take a "jolt" to get it back on track. ... we're all different enough that there will probably never be a "one treatment fits all" in the future of MC.

Yep. And this site is so helpful to newbies, with an info section laying out the small caliber guns all the way up to the big ones. I tried the small stuff first - and for many people that would be all they need.

The MC aspect of my baggage remains under control with the Entocort (after short burst of Prednisone to HALT the inflammation) and that is the real focus of this site. I am really, really grateful to have formed stools, without the sudden urgency, etc.

[Momster]

Hi Bob:

I don't believe we've talked before - I've been away from the Board for quite awhile.
I can't add much to the above well informed answers, but do have Fibro. so know about brain fog. No fun!!!
I hope things continue to improve for you.

Momster

[bobh]

...have Fibro. so know about brain fog. No fun!!!

Yep, seems some of us have inflammation that extends beyond just the bowels. Thanks for the support!