a “normal” colon: IBS, Hepatic Flexure Syndrome, Slow Transit

This is a normal colon:
CT colon hepatic flexure syndrome

No polyps, no thickness in the walls, reasonable unfolding of all the folds, no restrictions or obstructions, no cancers. Altough its path doesn’t look exactly like the text book examples this is a normal colon.

The doctor will say: “This is normal, there’s nothing wrong with you.”

What he actually means is: “This is within parameters, there’s nothing Very Wrong with you. However we must remind ourselves that this picture does not show its functionality in your normal life, when your colon is filled with food instead of air. But hey, no obvious problems!”

I’m glad that Very Wrong Things are ruled out.

I now look more closely at the picture and I think I can see why the owner of this colon wakes up in a sweat every night. At first I thought the problem was solely at the hepatic flexure. Indeed there is a steep bend, where the colon nearly folds into itself, that’s difficult to manouvre for colon content when the person is lying down.

But now that I’ve experimented for a few weeks I can with 80% certainty say that the problem lies at the beginning of the colon, right where it sprouts from the small intestines.

It’s a bit difficult to see but on the smaller scan on the right you see the person lying on her left side and when zooming in you can see how many bends there are in colon section right after the appendix:

CT-foto-colon-inverse

I inversed the image for more clarity.

From centre bottom going up diagonally to the right is the ascending colon: the folds stack up onto each other. Imagine food stuff traversing these bends. It will need the torso to be upright and move in various directions to create room to navigate this freely.

Theory:

this part somehow collapses when lying down. In the first stage of the night food gets processed by the small intestines (average time 4,5 hours) and gets pushed into this part of the colon. Where it gets stuck. The colon swells.

The large motility movement (BMM) comes by every 1,5 hours or so and cannot shift this food. 4,5 hours after the person lied down this accumulates into a stress reaction, waking her up in a sweat. Lower left abdomen tender and swollen.

Experiment:

avoid food to be there in the night. The person has been eating at different times the past few weeks and has been eating different foods too. Avoiding bulk, fibre and gaseous foods (because this is also the part of the colon where bacteria produce gas and gasbubbles easily block a colonic bend or fold). So that’s a low-residue diet plus FODMAP.

The timing has been important too: eat main meals before 2 in the afternoon. Or: “have dinner at noon.”

Drink a lot after 2 o’clock until bed time. Tea, broth. There has been snacking on low fibre things such as chocolates. A walk every evening is important because being upright and moving about ensures the foods in the ascending colon to move upwards.

Results:

have been satisfactory. Sleep has been longer than the typical 4,5 hours on more nights than ever before! Wake up is now typically after 6 hours (4,5 hours + one more BMM cycle) and most days in a sweat with a filled ascending colon but not too dramatic. It has been bliss! So much more gets done in a day on a 6 hour sleep than a 4,5 hours sleep. The person has Adrenal Insufficiency and can even lower her Hydrocortisone on those days.

Future:

get as many 6 hour nights as possible. Hoping to work towards 7,5 hour night but as of yet no idea how to accomplish that. More movement during the day is one route. Tips welcome.

Some Details:

On days that have dinner-at-noon there is tiredness after dinner. It’s the typical tiredness associated with digestion. After one hour there needs to be lie down for one hour for food to be processed by the duodenum. Resting is important to deal with CFS/ME anyway. Needs rest twice a day.

Protein is needed by 11 o’clock in the morning, especially Choline, which fuels the Parasympathetic Nervous System. Otherwise the person will feel weepy and wired at noon. I’ve got Choline pills and body builders protein powders as a back up.

When B12 vitamin is taken (in mB12 form)  Fosfatidylserine is needed a couple of hours later or pee will smell of ammonia, indicating proteins not being absorbed and used for repairs.

Testosteron is taken twice a week, together with some body builders proteins (l-glucosamine and casein), especially on the morning of a work out (fit20). Feeling very good about it. Strong. Together. Without any of these her muscles will not build. With them the muscles are actively in use when standing or sitting, she’s not merely “hanging off my skeleton” or using fat rolls to lean on. It’s quite a novel feeling and it feels appropriate.

The fibre equivalent of one small clementine is already too much fibre in a day and will cause insomnia. Nuts are being consumed though and but they have to be chew chew chewed.

The colon expert at the hospital said fibre is only needed for colon functionality. If the colon functions (i.e. you have satisfactory bowel movements) than fibre is not needed. Because the problem here is in the ascending colon food has not been dried out yet and hard pellet stools are not an issue. The low fibre diet does not cause very loose stools either. There’s a bowel movement once or twice a day.

I’m amazed at how sensitive the variables are. One clementine, come on!

There is one other thing as important for the sleep as food intake: dust. The bed needs to be changed at least once every fortnight and needs to be vacuumed every third night and sleeping clothes (including hats and scarves) need to be shaken vigorously out of the window every other day.

The last one stumps me. It needs to be both: food and dust. One of the two does not prevent the waking up.

One more detail: the CT colon shows a little bit of food matter left in the steep bend at the Hepatic Flexure. Indicating, because the patient had a very good colon cleaning before the pictures were taking, that this is indeed a second trouble spot in the colon. Food does get stuck here, especially when there’s air trapped. Avoidance of gaseous foods helps with this particular colonic problem. I’ve researched FODMAP and have understood the reasoning behind it (“what do bacteria eat?”). This allowed me to assess potential food items instead of trying to follow the list of this or that person/website.

  • As a rule: stay away from dietitians, they mean well but they do not know enough
  • as a rule: run from from amateurs/celebrities/people who’ve done a course/wrote a book about their experience. They’re in it for the money and their kick for saving humanity.
  • view your doctor’s opinions with some reservations. He’s knowledgable but he’s wearing horse blinders and has blind spots and assumptions (about you, your gender, your age and what “normal” bodily function is).
  • educate yourself. Sherlock the heck out of your thing.

Sherlock Holmes pic by Kevin on Flickr

the cause of my 3AM-5AM insomnia

I have this typical insomnia:

  1. fall asleep easily
  2. wake up at 3AM
  3. lie awake for about two hours, being wide awake, very alert

Upon examination there are a few characteristics to consider:

  • I wake up sweaty, with a heated body. I can’t go back to sleep unless I cool down. This points towards some sort of stress reaction my body is having, causing me to wake up.
  • The mental alertness is ridiculously high. It’s like I have a pinball machine in my head. It’s not anxiety, it’s more a superability and -willingness to solve a problem. This is a dopamine excess.
  • The 3AM is not 3AM. The insomnia occurs pretty much precisely 4,5 hours after I fall asleep.

These three things: stress reaction; dopamine excess and 4,5 hours interval have now led me to the cause of my insomnia. It has to do when the internal workings of the machine trigger the neural wiring which reacts violently.

A small intestinal problem triggers my overexitable neurotransmitters.

It takes 4,5 hours for food to traverse the small intestines. It then enters the colon. There, in my case, it remains. It doens’t travel up the ascending colon because it cannot make the curve near the liver (there’s probably an air bubble blocking the way). Food keeps being piled on and the right vertical part of my colon expands, causing stress, waking me up. Since the enzyme that’s supposed to break down stress hormones is broken in me, the MAO A enzyme, my levels of noradrenaline (=norepinephrine) and dopamine are getting very high. Causing me to lie awake for 1,5 to 2 hours, frantically  writing speeches on Important Subjects. During this time my cortisol is depleted and my growth hormone doesn’t get the time of day (I’m robbed of a significant portion of REM sleep). This is a large tax on the body and leaves me with diminished capacity for getting out of bed the following day and healing properties, especially now that I’m over 25 and my endo-glands can no longer make up for such a plundering.

There we have it. A simple blockage leads to a build up in the right colon which makes my body cry out. Triggering the release of too many excitable neurotransmitters.

Again it’s the imbalance between Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS), which both have so much to do with the perifere location: the gut.

My balance is skewed in favour of the SNS due to a homozygous mutation of the MAO A  gene and a life time of training to be in Fight or Flight. I can unlearn the latter. I can only influence and work around the former.

Gut motility is mostly governed by PNS. It’s the modus of Rest & Digest in opposition of SNS’s Fight or Flight. Looking at particular neurotransmitters I’ve now learned that as soon as dopamine rises the stomach is reluctant to release its content. This is why a dopamine-antagonist (Domperidone) is prescribed to people with nausea and vomiting (Dutch link). And this is why I have to go lie down about an hour after I have ingested food. The stomach takes 45 minutes to break down the first bites I took and is now ready to release it. I need to make room for PNS to do its thing and the only way I know how to at the moment is to lie down and relax. As soon as I do so my upper GI tract starts gurgling. If I don’t lie down I’ll grow weary and moody as the day progresses and I’ll be devilish in the evening and have hellish insomnia at night.

Motility in the small intestine is dependent upon having enough of the PSN neurotransmitter Acetylcholine and by activating lots of serotonine receptors. Having bad MAO A is a good thing here, serotonine is soaring and there should be one for every receptor. As soon as I lie down at night the small intestine starts happily motoring things along. In 4,5 hours it has emptied all it had into the next portion of the gut via the one way ileocecal valve into the colon. Luckily I have no problems there. For some this valve flutters and lets stuff and bacteria creep back into the small intestine.

We’ve all seen the picture of how the colon lies in the belly:

The colon rises up, all the way to the liver, then bends to the left, traversing in front of the stomach exit to the spleen area. There’s another bend downwards and then it ends in the temporary holding station called Sigmoid Colon.

Which is true for only about 5% of humanity. In most of us the colon is going wherever it wants. Diagonally to the spleen. Bending backwards. Bulging inwards into small intestine territory. So don’t take anything for granted, these idealistic pictures are just theory.
This colon is more likely:
 pic by Glitzy queen00, radiographer in the UK

I don’t know the route my colon lies. I can feel contents at certain places so I have some idea. But I suspect at the Traverse Colon things are iffy. Interfering with the stomach exit and the duodenum, where also the major PNS nerve is located, the Nerves Vagus.

At the right bend, the Hepatic Flexure, its location is probably irritating the liver. I often have a heavy feeling there, bordering on pain. And now I know that something is hindering process in the night. My GP suggested a mechanical issue: an air bubble is trapped in the Hepatic Flexure, preventing passage. He made the analogy with a bottle with air trapped in it: you can’t pour the liquid in a smooth motion.

I can work with mechanical problems. The solution is to lie on the right side. The air travels upwards, into the Traverse Colon. I’m using breathing as a motion device, the expanding and contracting lungs are the main mechanical force on organs, making them move and shift. It’s a natural thing. A good thing.

When I had an echo done of the liver I had to breathe out and hold my breath. The lungs forced the liver to peek out from under the ribcage and the technician could scan it.  It looked so beautiful! Things were moving and fluids were flowing and we saw all kinds of channels. It was such a marvel. Movement through breathing is very good for the internal organs.

After 5 to 20 minutes I turn on my back. I now lift my pelvis to the roof, resting on my feet and shoulderblades. This is a trick I learned when I went in for a pap smear and the cervix was not there. Somehow the uterus had shifted or folded back and hidden the cervix out of sight. I was asked to do these gymnastics so it may shift to another position. Mechanics. Everything shifts in there, nothing’s stationary. Organs are lying next to each other and are all able to shift and move.

There’s an excellent system in pace to allow for these movements. It both secures the internal organs to the scaffolding (the skeleton) and it lubricates the surfaces so there’s no chafing. It’s the Mesentry, a thin layer of epithelial cells surrounding all organ parts, like pieces of clingfoil taped to the back wall at various points:

 pic by blumdesign.com

The architectural structure of the mesentries is amazing, with small gutters transporting the fluid all around. Breathing and moving and muscular movements aid this system. Go check out non-profit educational site The Radiology Assistent for excellent images and explanations of many internal organs and structures.

I’m still on my bed, pelvic to the sky. I’m again using my breath to move things along. When breathing out I can manually manipulate the downwards colon on the left side a bit, trying to help it transport the air bubble to the exit. After just a few minutes I’ll feel the need to pass some gas. It’s only a little bit and I cannot believe that this is actually the bubble that was stuck at the Hepatic Flexure. But I have a result and I’m glad with it.

I now do this in the evening, before I go to bed. And during the day, when I take my hour rest. And at night, should I wake up. My insomnia is less severe because of this, there’s less dopamine produced. I still lie awake but now I’m a docile book, not a screeching video game. I have reduced the stress reaction. But I have not eliminated it yet.

 pic by amazon

I’m looking into a better motility of the colon. It’s not only air in the Hepatic Flexure, I’ve also noticed slow transit in the Traverse Colon. Then there’s considerable build up in the Sigmoid Colon to examine. And there’s a lack of neural signalling that I need to go, either #1 or #2.

Then there’s the food I eat that influences bulk, consistency, roughage and gas production. I already know to stay away from onions, beans and whole grains. Also carbohydrates make for a more severe insomnia, especially potato products. Which lead my GP and me to assume glycemic problems almost 15 years ago when I entertainingly mentioned how a potato dinner would keep me more wide awake at night than other dinners. Having been down the whole blood sugar route I can now say this is not an issue. But experiencing an insuline peak during the day does trigger the SNS for which I pay during the night. So sugar is still bad, but for a different -and far more serious- reason. Insulin is a potent poison, it should be engaged very prudently.

There, I’m done for today. There’s a lot to be sorted. Especially learning how/which neurotransmitters dampen the motility. Looking at you, dopamine. How to enhance the numbers for Acetylcholine? There’s a loop into the Methylation Cycle there that complicates things. There are probiotics that can help with signaling for defeacation. And how I can give PNS more time of day? I’m already grumbling that I have to lie down for an hour trice a day. But I gotta keep that pinball machine chilled if I ever want to sleep through the night and reap the benefits of both cortisol and growth hormone the following day.

A few more things to park here for future pick up:

1. Strengthening the gut muscles is a separate avenue to travel. One that works well for a lot of people, including a lot with Irritable Bowl Syndrome (IBS) (this is a link with the best instructional video for swinging a kettlebell). I’ve started kettlebelling which is a fun thing to do. I keep mine in the kitchen and kettle the bell a few times while I wait for the tea water to boil. Nothing on a schedule, no counting, . Keeping it fun. I already notice that there’s a certain pleasure in keeping your body upright using the core muscles, instead of stacking all your organs on top of each other and leaning on them. Sitting upstraight on a chair, like I was a woman from a 100 years ago, is pleasurable. Standing straight too. I’m stacking vertebrae instead of organs.

2. The stretching in the ascending colon activates trigger points causing sympoms. They are the reflex zones of the colon:

reflexzones dikke darm

The symptoms that occur at night in my insomniatic period are all noted in the reflex zones of the ascending colon: irritated and stuffed nose; oversensitive sense of hearing (fear triggering); strained eyes; soar throat and tonsils; extra pain in my right shoulder impingement. I have no issues with the other organs noted in this picture, apart from bladder and uterus which are at the sigmoid end.

These symptoms, especially of the allergy kind in tonsils, throat and nose, have thrown me off scent for the longest time. I kept thinking it was dry air or dust mites that kept me awake at night. But it’s the other way around: only if I wake at night dry air and dust mites become a problem. If I sleep through the night they don’t bother me.

3. pH in gastro tract.

4. osteopatic views on movement in and amongst internal structures. Link in Dutch.

5. the various types of motility in the intestines. one link and link to Flash card notes.

6. duodenic colic reflex makes you want to go #2 when the stomach fills up.

7. MAO A influencing when it’s already bust. Progesteron; B2; Ginko Biloba. Progesteron!

and to be perfectly clear: for years I’ve researched all the usual suspects for insomnia. Blood sugar; glycogen; sleep hygiene; circadian rhythm; melatonin; dual sleep; Chinese organ clock; you name it I’ve looked into it. It has done nothing. I could have guessed since I’ve had this sleeping pattern all my life, through every stage of health and constitution.

This now is the first approach that ticks all the boxes, explains everything and gives positive preliminary results when I tweak the dials that are involved.

For other people experiencing this type of insomnia I suggest assuming your body too is experiencing some stress reaction and figuring out what causes yours. I doubt it’s the same colonic issue I have but it might be. Especially if your MAO A gene is faulty you’ll recognize the alertness of your insomnia. This is separate from what causes the stress reaction. But if you are homozygous for MAO A then your dopamine is too high and interfering with stomach emptying and colon motility.

Don’t eat much.

  1. I preserve so much energy when I eat sensible (small portions of dense nutrient foods such as just 2 egg yokes for breakfast).
  2. Survivor Man Les Strous doesn’t find a whole lot to eat when he’s out in the wild.
  3. it’s berry time around my cabin, nature is giving! From this natural environment I get maybe 5 ripe berries a day… That’s not much.

1 + 2 + 3 = people were not made to eat all day every day. Certainly not in the portions we have at our disposal.

pic by Shannah Pace

Which is why:

4. sugar makes you fat and gives you diabetes. “Sugar” includes modern fruits, honey, wheat products, fruit juice and milk. Any amount over what you can balance on one finger will spike your blood sugar.

5. when you eat more than the size of your fist (or even half that) you’ll keep wanting more. You’ve activated your insuline system. This is a biological system that’s very hard to counter with sheer willpower.

The solution is to eat small portions of dense foods. Never raise blood sugar. Never go hungry.

I imagine a hunter gatherer’s daily collection: 5 berries and a small rodent.
pic by KateKrav

What will he do all day once he’s fed?
Sit around. Enjoying the view. Relaxing. Sleeping. Socializing. Thinking things.
Pretty much what the cat does, except for the thinking.

Can it be that we’re meant to do just that? That our bodies were made for searching food and, once found, to relax? To enjoy our brain a bit but not to the extent we pummel it today, with news and coffee and career schemes and games.

It certainly feels like my body was designed for having a little food and having a little lie in.
The problem is: what to occupy the mind with?

(I suspect we have drifted away from the original use in this also. We are addicted to the mental pummeling just like we are addicted to sugar and lots of food.)

hmmm.

No guts, no glory

It’s Easter Sunday.
Yesterday I spend a lovely day at a knitters’ house, making paper tape dummies. These are excellent! And superior in use to duct tape dummies. (no smell, no glue onto your pins)

My friend prepared a wonderful lunch and made sure to ask what I could and could not eat.
She skipped the garlic she usually puts into her soups. She made a stunning, hot aïlio as a side dish instead, for people to put into their soup. It smelled delicious!

I skipped the garlic but I did eat the other treats. Not the really bad things such as gluten or cake. But the things you need to try every once in a while, just to check how the gut is doing. And also to prevent it from getting too touchy/vulnerable/diva like.

So I had some of her fantastic candy (nuts, dried fruits, orange juice, cookie spices. Chop in the blender. Shape into bars or balls)
A sip of honey and comb from her own bees (!!! how’s that for a hobby?! In the city no less!)
Homemade tomato soup from home made broth, with pieces of onion and pepper (paprika)
Dark chocolate bonbons.

It was all delicious and so full of love :)

But I did lie awake tonight with an upset gut. It spilled over into my brain and I was hyper and doomed and fresh out of joy de vivre. Luckily I recognized these feelings as just symptoms. No need to do anything about them, least of all “solve” them. Just wait. Calm yourself. Try and get some more sleep.

Then this morning I could not get out of bed, all ME and lethargic and messed up brain chemistry.

It’s an odd state to be in. You feel rotten and you just want to lay there and stop existing. But the only thing that will actually help is to get up, to get moving and to get those nasty poisons out of the system. (just by being upright, walking around the house, drinking water or tea)
It takes a lot of will power to make it happen. To get to the edge of the bed.

Now I’m downstairs. It’s a lovely day outside. I had a peek but went inside again, there’s just too much sunshine, bird song and leaves.
Instead I’m in front of the computer now. First mug of tea is gone. Ear mufflers are on. And I read a bit about IBS (irritable bowel syndrome).

They list the same foods I ate yesterday as triggers.
Whereas IBS symptoms are mostly noted in the bowel (diarrea or bloated feeling or gassiness) I’m sure there are symptoms in the brain too.
I can probably find some knowledge and experiences in that field that I can use for me. I’m already very pleased that they note stress as an influence on the bowel.
The gut-mind-gut connection is all too real for me.

Today I’m having a little pity party that even small nibbles of food will trigger brain chemistry symptoms in me. I will have to reject even little nibbles with nuts, like the easter treats we bought for ourselves.

I cannot decide if it was worth it.
I was really happy yesterday, sitting at my friends’ wooden dining table, enjoying her food.
But last night and today I feel truely rotten and I don’t know how long it will take for my gut to quiet down and my mood to lift.
Well, it’s another faulty question than. I should not try to value if it was worth it or not.
Yesterday I was happy, I should cherish the memory.
Today is today. Time to make new memories.

Either way: it’s back to chicken soup for me.
And movement. I will take my walk today and sit upright and move as much as possible and drink tea a lot. If I do just that, it will have been a good day.

What I eat: 1400-2200 Kcal; 154 gr fat; 47 gr protein; 30 gr khd

For fun I listed this morning what I eat on normal days. This is my typical intake, I don’t vary much.

for breakfast: two egg yokes warmed a teaspoon of coconut fat, with pepper.

for snack/brunch/lunch/snack: a total of 175 ml of whipped cream and 40 grams of Lindt 85% dark chocolate. This can be plain or made into ganache. I eat portions through the day but the main part at lunch.

before/after dinner: two or three slices of liverwurst with 6 to 8 small pickles.

dinner: a piece of organic meat with a slice of full fat butter.

during the day: 2 l of herbal tea and/or water, each cup with added salt.

supplements, mainly minerals.

I plan to make a spread sheet with the portions and their nutritional values but for now I can tell you the total I eat on a day comes to:
1400 Kcal (at least. Probably closer to 1800)
154 grams of fat (at least. probably more. I love cream.)
47 grams of protein
30 grams of carbohydrates

this is a fat based, lightly ketogenic diet. I get my energy from the fats. My blood sugar and insulin levels are picture perfect.
My cholesterol is slightly elevated but as the good cholesterol is also high, the ratio is perfect.

I eat small portions, avoiding insulin triggers and preserving digestive energy. I chose high quality, rich tasting foods. This is all very tasty!

I aid my digestion with stomach acidifiers. 45 minutes after breakfast I go lie down and wait for my small intestines to process the food. This aids me much in terms of uptake of nutrition and preserving of overall energy.

On this intake I can do a normal day, including an activity such as a walk through the park or a shower. If I do more, say spend an afternoon in the city, then I eat more. Usually a piece of fish or shrimps with creme fraiche. Or more chocolate or sweeter chocolate or a chicken leg. Also more butter or coconut fat.

I think this way of eating is close to what Kwasniewski promotes in the Homo Optimum Diet.
I don’t know, I should check. I did start out on his diet but over time I’ve just gravitated towards these foods and am doing well on it for a few years now.
I’m never hungry. I don’t fret over portions or ratios. This is just what I eat.

Sometimes I crave things. Liver. Offal. Gelatine. Vanilla. I try to find it (offal is hard to find).
Other times I crave things I’ve recently eaten: chips, liquorice, cheap chocolate. These are different kind of cravings, these are addictions. I narrowed it down to a reaction to vegetable oils, sugar and artificial taste enhancers.
They are not necessarily bad (vegetable oils are pleasant) but I eat with care.

UPDATE
I think I miscalculated the cream. I thought I’d eat 100ml a day, I now think it’s closer to 250 ml. No way I’d survive on 1400 Kcal!
really, I’m taking in between 1800 and 2200. Because I’m in slightly ketogenic modus my body expells any energy it doesn’t need. It does this via ketones in urine and breath.
If you eat 1400 Kcal you are mismanaging your body. It could go in “survivor-mode”.

My health: strategy for my low cortisol

written a week ago:

CORTISOL LEVELS WERE MEASURED REALLY LOW
I had a good think about that ridiculously low cortisol level that was measured the other day: 0,3 in the morning where a value between 25 and 60 is normal.

This tells me that on that particular morning my adrenals were not functioning at a sufficient level. However, I did manage to get out of bed, drive myself to the hospital, walk through the cold and get myself to the right department and seen to. So some cortisol was clearly still there, I was not in danger of adrenal shock. I don’t think I functioned on adrenaline or willpower alone, I certainly wasn’t pushing things or in a fighting mood.

However, there were a few problems that morning indicating insufficient cortisol. I did drive at 85% of my usual alertness (but as I am a perfectionist who usually operates at 115% and also have my motor bike license -which makes you a better spotter in traffic- I feel I was not a danger on the road). I was bothered by the cold very much, a known body stressor. I had trouble operating the machine where you present your hospital ID (hello brain fog) and my hands trembled when I spoke to the nurse (a sign my body was nervous and lacked the hormones to battle that).

So I’m not sure how to interpret the level totally correct.

The measured level however indicates my adrenals have now shut down completely. There’s a good case to be made for that theory:

WORKING THEORY
My adrenals have shut down (almost) completely, since end of August.

Looking back I’d say this happened at the end of August. And stress was the cause, not the low supplementation of hydrocortisone.
My stressors were:

  1. the death of my grandmother in the Spring
  2. supplementing Zinc and inducing Copper dumps during the Summer
  3. a non-relaxed holiday to Ireland at the end of August. Bad sleep and digestion shut down.
  4. a blow to the kidneys in mid September: too much weird food + dehydration
  5. ongoing kidney- and liver pain ever since, nausea (organ malnutrition as a result)
  6. worries about a trip to Morocco we were to take last week

nr 3, the holiday to Ireland was just too much. Afterwards I couldn’t get my digestion working well enough, I couldn’t refind my tranquility. In short: recuperation took too long and was too costly. Then nr.4 happened and my belly hasn’t been functioning properly for months now. Pains and pangs, uncomfortable feeling and nausea all the time. Looking back these are symptoms of too low cortisol levels, especially now that the ultrasound and the bloodwork do not show other causes. No cortisol means no stomach acid, no bile, no motility.

Lack of cortisol also explains why on occasion I’d fall into a deep, peaceful sleep whenever I took my regular dose of  hydrocortisone. Normally this hormone would activate a body. But with shut down adrenals it would just quell a screeching lack, thus providing peace. Peace enough to sleep. I was so surprised as it was the same sleepiness you get with progesterone overdosing. You cannot fight it, you just want to sleeeeep. But with progesterone you awake groggy. With this cortisol sleep I awoke fine. Rested (just unwilling to leave the bed).

Like I said, I think stressors caused the shut down, not the cortisol I’ve been supplementing regularly for over a year now. As I supplement only 12,5 mg of hydrocortisone per day I don’t think the hormone therapy caused the shut down. The amount quoted in literature is at least 20 mg. I’ve been supplementing this lower amount since August 2012 and from that date on I was notably getting healthier and more active by the month. It is why I started to drive my car. It is why I felt confident enough to detox with the Zinc and the genome results.

A normal dose for someone with shut down adrenals is 20 mg or more. Or the other way around: doctors report people’s adrenals shutting down when doses of 20 mg or more are administered.

Shut down adrenals do explain why I needed absurd high amounts of progesterone the last two months. My body was scrambling for any and all progesterone to convert into cortisol. Indicating some level of function in the adrenals, btw.

THINGS THAT DON’T FIT NEATLY IN THIS THEORY:

  1. When that low level was measured I still functioned at an acceptable level
  2. at night I still often wake up with a cortisol peak, 8 hours after my last hydrocortisone dose which has been totally gone from my system by then.
  3. Four weeks ago I got a cold. The first one since I fell ill in 2008. A cold indicates that my immune system was too weak to keep it at bay. Usually immune systems get suppressed by cortisol which is why stressed people (with healthy adrenals) get every virus during flu season. How could I get a cold when my immune system is running wild and unchecked for years now?
  4. I am sensitive to low doses of anything. It may well be that 12,5 mg is enough for my adrenals to shut down.

We can think of reasons that make these things fit the theory anyway.

  1. I got to the hospital fine? I must be able to function at lower levels than other people. I sure do so with other hormones and medications. Or adrenaline makes the system go without causing its usual jumpy state.
  2. I wake up? My adrenals work sometimes, especially at night when blood sugar drops or I get too cold or dust allergy kicks in or insulin surge from the previous day catches up with me.
  3. I get a cold? My number was up, this was probably a particular persistent virus. I finally met a peron carrying a virus, haven’t met one for years which is the real reason I haven’t had a cold or the flu/ Or an alternative: the trip to Morocco had me so stressed out that I did make more cortisol and with that suppressed my immune system enough to contract the cold. I sure was worrying about it and determined to get it done. Got my fighting modus on. The funny thing was that once I conceded that I was not to go on the trip I took to bed and fell asleep, I developed a high fever and broke the cold in the next 18 hours. After that I had to lay a week in bed to recover. And another two weeks to recover properly. I am now back in the cabin and just today and yesterday I’ve felt alive again. Active. But this can also come from not being in the city. I am more charged in the city. And in need of more cortisol there.

 

CONCLUSIONS

At the moment my adrenals are not functioning. Supplementation is needed. More than 12,5 mg. At least enough to get my intestines working again properly. Aim for 17,5 mg. Digestion is a measuring stick. Getting hungry indicates I took too much.

Higher supplementation will shut down the adrenals for sure. Or keep them shut down. This brings risk, life threatening risks. I am aware of this.

Shut down adrenals an sich is not a problem. There’s a school of thought in medicine that thinks that a short amount of time will give the adrenals a chance to heal.

This will be my working theory. It can be amended when results contradict.

 

STRATEGY

Have shut down adrenals for the next few months. Aid them with enough hydrocortisone to keep my body out of stress and to have digestion functioning again.

Enjoy the peace. Rest up. Relax. Enjoy life. Don’t worry, don’t fret. Take plenty progesterone.

Be aware of the life threatening dangers. Inform loved ones. Always carry hydrocortisone on your body.

In February/March slowly wean off of the hydrocortisone. See if the adrenals kick in again.

If they do so: YAY!

If they don’t: visit the Adrenal Specialists in Radboud to become an official Addison’s patient and explore with them if it’s the adrenals or one of the brain glands that’s kapot.

 

ANOTHER PUZZLING BLOOD RESULT

Homocysteine was below 6. This is lower than you would expect under my working theory that my DNA mutations cause too high homocysteine. Has my supplemention of mB12 and Florinic Acid corrected my levels in only 3 months? Or is this a heterozygote mutation and did the incorrect gene never express?

things to think about next.

Basic project: getting through the day

so I’m getting through the day, one half hour at the time.

It’s ok.

I’ve pushed away all things making a demand on me. Emails, to-do lists, finding the right beads for knitwork, determining the meaning of life.

I still tremble at times. From the inside and sometimes my hands too. I try not to worry. Just keep the cortisone supplemented and comfort my body. Stress kills, after all. It feels like I have to care for a small child and that’s exactly the attitude I adopt: soothing, caring, comforting. And radiating confidence.

An unexpected symptom today is that my intestines don’t work. (They were fine earlier this week, I was really a bit proud having them back online after digestion halted while on holiday in August and later when the weekend of Sept 14th left me dehydrated and with kidney inflammation). Today they’re gone again. Gut health does influence brain health so there’s that connection. My gut feels ill and its misery ripples through my whole body. I think it has something to do with a commercial gluten-guiche and salade I ate yesterday and perhaps the 1000mg of vit C and powerful Magnesium citrate.

Anyway, I know a few factors play into this. Gut health is one of them. Stress another. Nutrition levels. Mental hygiene. Hormones. What a waste of time though!

So today I know not to take things too seriously. Just rest and heal, rest and heal. Both the body and the brain.

There’s this nagging suspicion though, that if I set my mind to it, I can reason my way through that feeling of not-worthyness.

I may have a go at it…. try to come out at the other end, with a shiny new idea of what will make my life worth living.

I’d love to be one of those people that finds a cause!
And a set of adrenals to go please, to furnace the drive and get famous and inspire others and get cosmetic surgery and teeth whitened and look good at the back of a book.
Nah, I’m kidding. I’ve already determined that the spotlights are not right for me. But I’d love one single cause to revolve every day around, to look forward to every morning when getting out of bed.
As my brain is my most powerfool tool I do believe I could reason away this feeling of inadequacy…

Or would that be a foolish enterprise? Seeing that I am a bit vulnerable at the moment…

At least we can see that my fighting power is kindled again. I refuse to lay down and wither. I want to squash this.

oh, you should see me now, wouldn’t you laugh! I’m a crumpled up newspaper of a human being, wrapped in a ’70s woolen blanket from my nan on a sheeps’ fleece in a wooden cabin. There’s a cat under the blanket, snoring. There’s knitting everywhere, all tangles. My hair is “Peppi” (*the Dutch Stan Laurel*), my eyes are swollen, my hands trembling, my throat is dry and I can hardly look straight. And I’ve got all this fighting power in me.
You’re the only one who knows and also know that I cannot decide where to aim this will power at. Heehee, we’d laugh ourselves silly!

TOOT! TOOT! BOING! BOING!

video to intro Peppi and Kokki


picture by Lorie B. Kellogg

On the Way.

The past ten days I started feeling better. I am now confident to say: this thing is working. The Copper shedding is getting less, the symptoms are getting less. I have more energy but less of the high-pitched maniacal sort.


pic by David Ritter

I am hoping the robust health I’ve already achieved underneath the CFS-like symtoms the Copper induces will start shining trough now.

I can have larger doses of the Zinc now, up to 15 mg per day. Essential is that I have some Methyl-B12 and folinic acid with every meal. And vit.D3 to get the day started. And Progesteron cream to aid the Methylation Cycle, not just to balance my hormones.

With the folinic acid I noticed my body has an active craving for it, as soon as I hold the pill in my hand. It took a while for me to decide if this is the legitimate feeling of “want that! need that!” or the more addictional craving like “want that! WANT that!“.
The last one should not be fed. Each and every food or substance that induces that feeling inside me is bad for the system: sugar, rancid oils in chips/crisps, E261, fast food, food additives, drugs and nicotine (I presume)


pic by Alison Taylor

It is a wonderous feeling, to have your body actively indicating it wants something badly. I had it with the food supplement Lithium, years ago. I have it with Demeter products such as full cream butter versus commercial foods. I have it with unpasteurized cheese (“Boerenkaas”) versus most cheeses available at the shops. I have it with the one sunsoaked blackberry in the hedge versus the little waterballoons sold at the shops. But that last one is probably dictated by my mind, with me being in the field with the bees and the dragon flies and all that.
The other ones can be checked with a double blind experiment. And they have.

pic by Enrica Bressan

Other substances that my body needs do not give that reaction. The progesteron cream for example. As soon as I apply it my body relaxed. But up front, without touching it, there’s no indication it benefits from it. Weird.

Anyway. The Folinic acid.
I checked online what other people take as doses. I checked only with people who have the same DNA mutations as I do.
They vary from 800 mcg to 3,2 mg to temporarily doses of 7,5 mcg.
Up untill now I was careful not to exceed 1,2 mg but now I will up the doses to (not more than) 3,2 mg. In small nibbles through the day, whenever my body needs it to process food. It’s half time is six hours so that’s breakfast, brunch, late lunch and (small) supper at 16 hour. Brunch being the main meal and meals getting smaller after that. No meal bigger in volume than one fist. To stop insuline from happening.


A volume bigger than this will trigger insuline, even if it’s just a sugarfree salade.

My research was on the forums of 23andme.com and on the forums of ME site of forums.phoenixrising.me
Here are the people who find their way through the same wild lands of pioneering medicine as I am.

As I felt a bit better I did two things: I took a week long holiday in Ireland and I drove 500 km in my own car on a Summersday.


pic by Alan Witikoski awitikoski

The holiday was nice but an attack on the system. My bile stopped flowing (I have no idea why) so I had minimal uptake of nutriënts and minimal shedding of toxins for ten days. Only four days after returning to the cabin my bowelmovements started to look nice and dark again and my body felt better.
During the holiday, my hydrocortison kept me going. Which is a risky means to an end.

There were lovely moments in Ireland, staying with my aunt in a cabin of her own. Us having meals together at the table, with real crockery, the lovely chatting,  us laughing at her chickens. It was great!

pic by Michael & Christa Richert

Once home I was on my own again at my cabin, still on a high from the travelling. It is evigorating, don’t you find? Being part of the global community. Looking at other parts of the world, renewing your eyes for your own part.

That’s in part why I grabbed my car and made a big tour through the Netherlands. I went to all the provinces in the North. I had my car equipped with supplies: salted water; gingerbuttercake; a few grapes; lavendel oil; a lazy chair and crochet projects and a book and a sketch book to have rests whenever I felt like it.
It felt great! Being on the road, going wherever I wanted to go, seeing landscapes change, see other people driving and being free. Wasting petrol because sometimes you can just go and waste petrol because you LIVE.

I saw a stork on a lamp post. I felt such freedom and independence. I still do.

 

 

Now I am back home again, in the cabin. And, with my somewhat clearer mind, I have started working again, on one of my five jobs: designer. Or illustrator, to be more precise. I’ll show you if I got some actual things. Right now it’s in that precious state of nursing and not talking too much about it lest it withers before it came alive.

pic by Jean-Paul Brouard

off to the city: plans

will be spending a short week in the city again. Lots of appointments, if by ‘lots’ you understand ‘one a day’.

I do want to get some work done too. There has not been much of that the last two weeks. One week I had to recuperate from the previous week in the city+period, the other week I had a visitor come by for four days in a row and spend one day making (two) phonecalls. So that was all my daily allowance of energy spend.

But this coming week I hope to do some work, regardless of the appointments I made. I’m eager to do some writing and as I’m more energized when I am in the city there’s reason for hope I can combine the two. I’ll also need to rest up more, each day, if I want to combine things. So the plan is to switch very promptly from activity to rest. ‘Power relaxing’. Or something.

I will actively inject 45 minutes of resting here and there across the day. A new approach to the day. More like a schedule.

There has to be one in the morning and one in the afternoon. And my regular rest around noon. So that’s the plan: to keep an eye on the clock and check with myself: did I get my mornings rest already? And no slouching behind the computer. Either be active or be resting. Don’t let the hours run through your fingers.

Either be active or be resting:

 

Continue reading

A Good Days Work: Science Writer

it was lovely and very different than from what I expected.

After writing 3 blog posts this morning (one here, two over at the knitting blog) and loosing myself a bit here talking about sweaters, I was too tired to do my thing right away. There’s this window of time you see, when I get energy from my breakfast but before the hard digesting begins. It’s about 45 minutes long which is the time that a stomach needs to process a moderate bowl of food. After that the small intestines go to work, you know, the part with the pancreas/gallbladder/liver. It’s where the main uptake of nutriënts takes place and it’s a very busy time for the body, hard work. I usually have to lay down for that. Otherwise no digestion, no nutrition, more illness. My belly starts to ‘sing’ (bloop!blblblop!) which is the sign it is working. But no horizontal resting, no singing.

So I took my rest, did more knitting and waited untill I would bounce back. This happened at around 2 o’clock so I stood up, washed my face (if I have not done this by the time ‘ingestion-nap’ sets in I have to wait.) and prepared my desk. Ready to go to work!

looks quite ‘alternative’ for a down to earth engineer/writer doesn’t it?

that’s Frau Holle on the wall; my bird watching binoculars on the cat’s thingy; théine free Lady Grey tea with cream in a handmade mug and a free style knitted cushion inspired by Mary Walker Phillips. Knitting for engineers, be sure!

On the left is my notebook with the notes I made while reading my sources for the last few months. You see I have colour coded a few because I plan to have four approaches to bacteria. This will be four books, four papers or four elaborate chapters. We’ll see. I opened my writing pad, it’s on the right there, rotated a bit. That is because I don’t write in a horizontal line, I write vertical, from bottom to top. Usually my pad is rotated even more than this when I write on it… don’t know why. Don’t care.

on a separate piece of paper I jotted down the general outline of the paper, it’s on one of the two cards on the right. I am pleased that this outline is not a very logical one. It’s not scientific in approach, it’s not describing the problem, describing the context, describing solutions and end with conclusions. No, it’s more whimsical. There are about 30 main paths this paper can follow, in structure. Paths like the scientific one I described above. Or a diary. Or historic overview. I just chose one subject I want to start with and followed it up with another and another. It is now an indication of chapters that I cannot defend but I really like it. I am looking forward to put some wordy flesh on these structural bones.

And then the words wouldn’t come…

Those first words. The first alinea. The jumping block from which the rest would flow.

I tinkered around a bit, tried some starts. Dug up some more figures up online. It was not that it was a blank canvas that hindered me, I knew exactly what that first alinea would have to say. It was that I could not find the exact words I was looking for. I was not funny and witty from the get go.

So I stood up and walked around the room, fiddling with this and that. Sitting again. Writing a sentence. Crossing it. Checking twitter. Fiddle a bit more. Brush teeth. (another thing that is important in my day. If too much time passes between my tooth brushings too much plaque (=bacteria) builds up and this becomes a body burden. To me. Because I am crazy sensitive. It’s something I discovered empirically and it is repeatedly confirmed. But it too takes planning because I was just about to make myself a cup of tea so I’ll do that first……an hour later I have the nagging feeling I’m forgetting something… thankfully because my eating doesn’t involve sugars or starches I do not have to brush every three hours like other people should.)

Well, then the writing came. I wrote that first alinea, it just came. It is nice. I’m happy with it. (even if it’s just a first draft)

Then the second wouldn’t come. Got to do more fiddling. Then it started again. And so on.

I am really surprised this is how it works! It is like playing, I am really having fun. But then the next moment it’s like you want to cry a bit, because it hurts a bit, but without desperation. Whimpering more. A really weird combination.

What it is not is too much pressure. Too much ambition. Too much thinking. Too much work. Yay.

I am really surprised. And glad.

PS

writing like this is JUST like knitting the way Mary Ann Phillips does. You knów what you are doing and still you are just playing. You take your skills and your knowledge and you forget about the rules (but not entirely)

patterns emerge, beautiful things emerge. Things you could not have imagined before you started making them but once you make them you recognize them. Their pattern, the rules they obey, the rules they break. It is a very joyeus way of working.

these knitting were just started, without any plan in mind. Just do some knits, a purl, a yarn over. By repeating them patterns emerge. They themselves inspire to knit following rows a certain way to create other patterns. Before you know it you have made a piece of lace kitting that no one ever before has made. You have even invented some stitches that did not exist previously.