The Power of Poo

Poop for Sale

2012-02-20T21:53:00.001+11:00

Only two weeks ago I wrote about the possibility of finding a paid donor. Not so silly it would seem. Check out this news article about a 13 year old who earns his pocket money this way. Beats serving fries at Maccas!

Every TRUTH passes through three stages before it is recognized.

In the first, it is ridiculed.
In the second, it is opposed.

In the third, it is regarded as self-evident."

Arthur Schopenhauer

Finding and Approaching a Donor

2012-02-05T17:34:00.000+11:00

You would think that finding a fecal transplant donor in a world where people defecate daily would be easy. Your neighbours do it. The bus driver does it. The average person you ignore as you walk down the street does it. (Apologies to Cole Porter). Not so.

Some will recall my post Donor Doldrums last July, a light-hearted wail at this irony. It was a major issue for me and my inbox tells me it is a major issue for others. It seems that those in need of a donor fall into three distinct groups.

The first group gives little thought to the quality of the donor and chooses their nearest and dearest, often a spouse. Often they don't bother with testing. This is convenient but may not lead to the best result.

The second group is terrified of picking the wrong donor and has an impossibly long list of perfection they are seeking in a potential donor. The reality is that there are no perfect donors and you will be taking a risk with whomever you choose. The trick is to minimise this as much as possible.

The third group simply have no one they can approach and are at a total loss how to move forward.

If you are in group 1 or 2 above, these issues are discussed in more detail in Is FMT for You? But how do you find someone, when you have no one? And how do you approach them when you find them?

If you have been sick for a long time it is quite likely that you have few if any friends left. Family members are often not an option due to health problems that make them too risky. In addition to this the donor has to be willing, able and geographically close.

Unfortunately we do not have Donor Banks to call upon, so below are some ideas on how to find and approach a donor. All of them will require you moving out of your comfort zone, swallowing your embarrassment and summoning personal courage at a time in your life when you feel sick and desperate. Like it or not, personal challenges and facing the unknown are part of the involuntary journey we find ourselves on.

Idea 1 - Recruit an Intermediary

Even if the people you know are unsuitable, they may know people who are suitable. Let's call it word-of-mouth referral.

I can hear you thinking 'why would some one I don't know help me?' Well think about it. Many people do good deeds for strangers. There are people out there who enjoy helping others.

So now you're thinking 'but this is a particularly bizarre disgusting good deed and they will think I'm a crackpot". They won't think you are a crackpot if a) a mutual acquaintance initiates the conversation b) your story is told in a way that engenders compassion and a desire to help and c) the request is accompanied with an easy-to-understand news article or video clip explaining the procedure.

Example

Your aunt is an unsuitable donor as she has MS and is on medication for indigestion and anxiety. But she wants to help so over the dinner table she raises the topic with her husband and teenage son and daughter. "You know I have a friend who is in a difficult situation. You wouldn't believe it but she is very ill and needs a fecal transplant".

Forks clatter to their plates as your aunt explains that FMT is not much different to a blood transplant or bone marrow transplant, but less invasive. She explains that although the practice hasn't yet been accepted by mainstream medicine, it is slowly growing in acceptance and there are several reputable clinics around the world that undertake the procedure. She explains that she is unable to help due to her health issues and asks if anyone else would?

At this point no one is eating their meal. The teenage son and daughter determine it's too revolting to contemplate and decline outright. "Totally GROSS!" they cry and flee the room. The husband says 'well it sounds perfectly natural to me, what's involved?' And there you have a potential donor.

The great thing about recruiting an intermediary to help you, is that both the request and the donation can be anonymous. In many ways anonymity is easier for both donor and recipient.

The intermediary doesn't even have to be a friend or family member. Sometimes people you don't know well can be surprising allies. People with scientific backgrounds, those who work in medical or para-medical fields and those who have been raised on farms with animals will be more comfortable with the topic than others. Old friends you haven't seen in years may be more sympathetic than those you see regularly who are sick of hearing about your ailments and latest crazy treatment.

Idea 2 - Approach a Religious or Community Service Organisation

Here again, you will find people who like to help others. Anyone with a kind heart, an open mind and a healthy body is a candidate. If they are unsuitable as a donor, they might act as an intermediary and find some one who is suitable.

Not everyone will be receptive but finding a donor is a numbers game. What have you got to lose? They can only say no.

Idea 3 - Advertising

Unfortunately the way the world is, an advertisement for a paid fecal transplant donor is likely to attract every nutcase alive. On the other hand if you advertised for a voluntary donor in the right media, it might just work.

I mention advertising not so much as a recommendation, but as an idea. I have not tried it, but I certainly thought about it. We live in a world of instant gratification. When we want something, we go and buy it. Why not pay a regular poo donor? How much different is it from paying someone to mow your lawn or clean your house?

The problem is that your donor has to practice clean living and eat a good diet. A paid donor has no incentive to tell you if they ate suspect chicken the night before, are not well, have taken anti-biotics etc. Then again, surrogate mothers are paid for their biological function and maintaining good health is a part of the contract. It seems to work for most, so maybe reliable paid donors are a possible.

The CDD in Sydney, Australia is a world leader in FMT. It has a donor bank with three donors who are tested regularly and there is a nominal charge for this. Nonetheless many patients prefer to arrange their own donor. Personally I would prefer to have a 'blended' sample to add hybrid vigour to the infusion. Hopefully donor banks will be the norm in future, unless freeze-dried poo in capsules come on the market sooner!

How to Approach a Potential Donor

Ideally when approaching a potential donor you will be articulate and present your request in a way that meets with favour. The challenge is to come across as sane enough to ensure credibility, while desperate enough to evoke compassion and an urge to help. None of this is easy, but it's almost impossible when you are sick, riddled with brain fog and for many, too fatigued or toilet bound to move from home.

Fortunately modern technology has given us another mode of communication: the email.

Putting your request in writing helps you avoid embarrassment, cover all the facts, provide links to persuasive information, explain how desperately you need help - all the while giving the recipient the opportunity to say 'no thanks' without needless emotional devastation on your part.

The key points to cover in your email are:

I need to ask you a favour as I'm in a bad way.
This is what has been happening to me over the past X years.
Doctors and naturopaths have been unable to help.
My research suggests that the only hope left to me is an unusual treatment, a fecal transplant.
A fecal transplant works in a similar way to a blood transplant or a bone marrow transplant.
The idea is for the infusion of 'good bugs' to conquer the 'bad bugs' and gradually restore me to good health.
This treatment is not yet mainstream but is gaining acceptance in some parts of the medical community as more studies are done and success rates proven.
I am looking for a donor and am hoping that you can help.
There is some pre-testing involved, but no cost to you.
Here are some articles/links that will give you more information about the procedure.
I totally understand if you are not comfortable with the idea, but if you can't help I would greatly appreciate if you could think of someone else who might.
What do you think?

If you are in Australia or New Zealand the link I would include in your email is the Centre for Digestive Diseases website and explanation of FMT or the video of the ABC's science show 'Catalyst' visit to the Centre.

If you are in the US or Canada the link I would recommend is the Bright Medical Clinic website and explanation of FMT or this YouTube clip or Dr Lawrence Brandt's video presentation (more scientific).

If you are in the UK (or elsewhere) and know of a good resource, please let me know and I will include it here.

Lastly, do not send your email on a late night whim. It is too important to write on impulse. Prepare it over a few days and review it to make sure it is concise, persuasive and makes sense. If possible, have someone else to read it first.

Good luck!

Do what you fear most and you control fear.
If you don't control fear, fear controls you.
Tom Hopkins

In Praise of a Boring Life

2012-01-26T12:32:00.002+11:00

Last week was a big week for emails at thepowerofpoo@gmail.com. I am feeling like the Queen of All Things Fecal as cyber-sufferers write to me for advice and reassurance in preparation for 2012, the year in which they will conquer their poison poo.

I am always reminded how lucky I am when I hear what others are enduring, many without apparent bitterness. You know, the silent sufferers who shoulder their pain without complaint? Well that certainly isn't me! A saint I am not. I have kicked and screamed and complained my way through this sorry ordeal and wouldn't have it any other way.

It has been my indignation, rage and refusal to lie down and die that has spurned me into action and on to recovery. Indeed the conception of this blog was one big loud complaint, a defiant protest against the plight in which cyber-sufferers like us find ourselves, courtesy of anti-biotics and the medical profession.

I have in my Blogger drafts a half-written post titled "Physician, Heal Thyself". It's a rant not yet fit for public consumption. The title came to me courtesy of another cyber-sufferer, quoting a biblical proverb that urges those who seek to heal, to first heal their own defects. (Her idiot doctor had convinced himself that she was anorexic.)

Perhaps I should title my unpublished rant "First, Do No Harm" which is of course a key plank of the Hippocratic Oath all doctors invoke. Ultimately the problem with my half-written post is it is so hard to know where to start, and even harder to know where to stop. One thing I know, it is their arrogance more than their ignorance that makes me seethe.

To give credit where it's due, the latest gastro-enterologist (no 3) was a pleasant surprise. Refreshingly honest but at a total loss, he sadly concluded "I love a challenge Tracy but I can't think of anything else to help you. Perhaps you should see an immunologist?"

Somehow I feel more kindly toward the anti-biotics themselves than the doctors who pedal them. Indeed anti-biotics would be a wonderful thing if used rarely and sparingly when life was in danger, with prophylactic support and respect for the great microbe biome within.

However it is beyond me at the moment to write anything kind, considered or objective about the drug-pushers who prescribe anti-biotics without a thought for the carnage left in their wake, blaming the victim when they cause more problems than they solve. Then expecting exorbitant payment and respect from the community. What other profession could get away with it? What else is to be said? They are what they are. Or as we say so eloquently in Australia you can't polish a turd. It is what it is. (Apologies to the humble turd, which has of course been more use to me than the medical profession).

From this to my mother who decreed that she would have nothing to do with me while I was 'treating myself'. In her usual confounding manner she disregarded my two years trekking through 3 colonoscopies, 3 gastro-enterologists, 4 general practitioners, 1 psychologist, countless naturopaths and tens of thousands of dollars. What choice have I had but to hit the Internet in search of cure?

Two emails in particular moved me this week. One from a 19 year old whose life has been ruined by anti-biotics, who took the time to thank me for 'coming out' about fecal transplant. It gives people like myself hope when hope seems lost, she wrote. The other email was from anonymous 'B' who merely wrote to see if I was ok, as I haven't posted for a while. Yes I am very much ok, thanks B!

Never mind that I can't eat anything much and still rely on fecal transplants and supplements to feel 60% well. I am otherwise happy, functional and something-like-normal again. To me this is heaven. The evil streptococcus remains banished from my gut and the residual bugs are trying their best to grow. I feel it will just take time for my ravaged gut wall to return to normal after enduring years of tumult.

The best thing about my residual gut issues is that they are physical, not mental. Let's face it, one in five people in western societies live with chronic illness. For me, living with this residual level of illness is easy compared to losing my mind and feeling like I only had weeks to live.

I ached this week for another reader who wrote:

One thing I'd like to clarify is that I'm not suffering from something trivial ... My challenge is that my body is absolutely breaking down and aging rapidly, which is ushering me to my grave.

I knew exactly how he felt, and why he needed to justify himself. No one understands but us. Three months ago it seemed that my gut had reached the point of no return and my health was on a slippery slide to obliteration. I was clinging to my sanity like a ship-wreck. At that stage I had given up trying to explain why I felt I was dying, despite looking perfectly normal. It was easier to give people the answer they wanted to hear "just fine thanks".

Nowadays I am learning to be normal again. I am learning to relax and breathe deeply, those long soul-quenching breathes one takes when relaxing and cherishing a quiet moment. I am starting to rest the adrenal glands that carried me through two years of moment-by-moment survival, on to victory.

The challenge of becoming normal again has been letting go of the anxiety I carried for so long. While its origins were biochemical it also became a survival skill. As those who wake daily to brace for the survival exercise of dragging themselves through another day will know, hyper-vigilance is critical to staying one step ahead of the frailty and insanity nipping at your heels. Anxiety is a necessity. You don't have the luxury of letting go.

As joy returns I often find myself moved by the mundane. Before I fell ill I thought my life was somewhat boring. Now I see a boring life as an unmitigated privilege. If you want an eventful life, develop an unpredictable invisible illness that the medical profession has never heard of and can't help with, all the while losing your mind, your friends and your money. No thanks.

This experience of loss has heightened my sense of gratitude for many things, including an uneventful life. The Buddhists say there is no enlightenment without illusion; and so it is that you can't appreciate health and a sense of normality until you lose them. It seems that we human beings need polarities to keep us grateful.

I have identified so much with the refugees in the news last year, many of whom suffer mental illness after long periods in limbo, waiting for word on their fate. Not only have they lost their identities, but the uncertainty growling at their heels eats away whatever is left of their hope and resilience. How they must long, for a boring life.

For so long I lost my ability to connect with others or experience joy. Yet today the joys of a boring life include discretionary activities I previously took for granted like buying a pair of shoes or a drive to the country to visit a friend. Sometimes I even linger to chat with the people who serve me in stores, instead of avoiding the inevitable eye contact and stress of faking connection through a dense fog.

Still, one of the great casualties of the illness has been trust is others and trust in myself to deal with others. It is hard not to be scarred by the indifference and judgement experienced from many. However the irony is not lost on me that the fecal transplant that saved my life and sanity came from another human being who chose to care.

Likewise this blog has connected me to others at a time in my life when I felt alone and discarded by the flesh and blood human beings in my life. Through your emails and readership I have found people interested in my experiences when others weren't.

This blog has given identity to just a few of the voiceless casualties of the late 20th century anti-biotic experiment and ongoing indifference of the medical community. In reaching out to help others I too have found healing. Perhaps emotional healing, like physical healing, will take time.

Life is mostly froth and bubble,

Two things stand like stone,

Kindness in another's trouble

Courage in your own.

Adam Lindsay Gordon

Holiday Reading

2012-01-03T20:02:00.001+11:00

The Miracle of Poo
A great summary of recent research on the important role that poo, the great microbe organ, plays in our health.

Gut Bacteria Divide People into Three Types
Scientist have discovered that three distinct types of bacterial ecosystems characterise human guts, suggesting that there is merit in trying a different donor for your FMT if the first one doesn't work.

Leaky Gut Syndrome: Breaking the Vicious Cycle
This is mandatory reading for those who live in the 'too hard basket' of gut dysfunction. It clearly explains how bacterial imbalance in your gut is only one part of a vicious cycle that includes mast cells, malnutrition and liver stress. It will give you clues how to unearth and manage your perpetuating factors and break the cycle.
There is no point replacing your poison poo if you don't deal with the perpetuating factors that cause the gut pollution and disturb healthy gut ecology.

Our Second Brain
A Plain English explanation of why an unhealthy gut causes an unhealthy mind and why taking pills for mental problems just makes everything worse.

'Nothing'
Food for thought from my favourite blogger. A heart-rending ode to the overwhelm, confusion and regret that afflicts those who suffer from an invisible illness the medical community does not understand. After reading this you will realise that you not alone and you belong to a community of cyber sufferers who know exactly how you feel.

Gut Reaction
About a book written by a mother who cured her son from Crohns Disease with a fecal transplant

New Treatments Blog
A blog by a guy who cured himself of Crohns, colitis & hypoglycemia. After a long journey through a cyber-maze of research and much trial and error he discovered it was Mercury poisoning.

Listen2YourGut
Jini Patel's excellent website and literature based on holistic techniques she used to cure herself and others of Crohns Disease. Jini does not advocate the labelling of gut conditions prefering to see them as a spectrum ranging from IBS, to diverticularitis, to ulcerative colitis to Crohns.

Encouragement on Your Healing Journey
For when you are feeling down, courtesy of Listen2YourGut.

The Poop Project
A site dedicated to generating public conversations about our private business.

The Poop Report
Not my idea of humour, but there's no accounting for taste.

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

10 Tips for Cyber-Sufferers in 2012

2011-12-22T21:02:00.002+11:00

The future depends on what we do in the present.

- Mahatma Gandhi

It was a year ago I considered suicide as I could not live with the mental dysfunction caused by the neurotoxins spewing out of my ravaged gut. Today I am a lot better thanks to FMT and face the New Year with renewed optimism and enthusiasm. However it is steely determination and refusal to listen to idiots that has got me here.

Your support has also sustained me. Each week your thanks and stories make me glad I endured the battle. I have been surprised to hear from cyber-sufferers as nearby as Melbourne, Sydney and Perth and as far away as Israel, Finland, India, UK & the USA. Thank you for being interested in my story when most of the flesh and blood people in my life weren't.

Yesterday I received an email that began "thanks for being there to hear my story". I knew in an instant how invisible the writer felt, battling for years a condition he knew existed but everyone else - his friends, family and medical practitioners - doubted.

I started this blog to encourage and inform, but it's real purpose is to become redundant. Is it not ridiculous that people have to write to someone on the other side of the world for a) validation of their condition b) a FMT how-to guide? No one will be happier than me when this blog disappears into the cyber-ether for lack of need or becomes a quaint relic in medical self-help history.

The holiday season can be a lonely time in which cyber-sufferers with unexplained health problems experience despair contemplating how to get through another day, much less another year of misunderstood misery.

People with gut dysfunction also face the decision 'to eat or not to eat' the festive fare on offer at this time of year. If we eat, we suffer and spiral downhill. If we are disciplined, we feel deprived and are often not supported by those around us when temptation looms.

Remember, you may feel invisible but you are not alone. If you are struggling over the holiday break, find a discussion forum and chat with others in the same situation. Take the initiative and start a thread to share what's on your mind.

Above all, make a plan for 2012. Don't wait for your naturopath or doctor to do it for you as they probably won't. The knee-jerk reaction reigns. Let's face it, no matter how well meaning your health practitioners are, it's your life and your health and no one cares as much about it as you.

When you have an invisible chronic illness that the medical profession doesn't understand, the healing journey is daunting. It demands you pour masses of information and money into a large funnel in the hope that a cure will pop out the other end. Here are some tips to manage that journey this year:

Write a 'to do list' for your health in 2012.
Resolve tor read a new article/blog/forum/research topic each week
Resolve to try something new each month.
Start a food/supplement/symptom diary so you can monitor the result
Write a list of questions for your health practitioners
Ask yourself 'what have I missed?' Write a list of assumptions you have about your condition. Then challenge each one of them.
Do a health budget so you can better manage the cost of being ill.
Stay in touch with other cyber-sufferers. We each fight our separate battles but reaching out to each other helps us heal both physically and emotionally.
Listen to everyone but follow the voice inside. It is up to YOU to decide when and if you should 'get your hopes up' or 'learn to live with' your condition.
When you fall, get back up again. It's okay to hurt and it's okay to howl, but don't let it beat you.

One day there will a universal medical protocol for diagnosis and treatment of intestinal dysbiosis via safe, accessible FMT. Until then, I wish you strength and steely determination on your journey toward healthy intestinal flora in 2012.

Obstacles are those frightful things you see when

you take your eyes off your goal.

Henry Ford

Winning the Battle

2011-12-12T20:50:00.003+11:00

It’s been a roller coaster few weeks but I'm winning the battle. My PH level has been normal for five weeks now. After 18 months of measuring PH daily and being heavily dependent on Alkamax I no longer need it. This means that the acid producing bacteria and streptococcus that tormented me for the last two years have finally been subdued. What a phenomenal win.

However the battle is not over. It's too easy to mistake a significant improvement as a green light to eat normally, when it's really just a yellow light to proceed cautiously. While I started out well with only mild reactions to normal foods, this has regressed. Food intolerances are cumulative and a mild reaction one day creates a major upheaval the next.

My challenge now is to get on top of the food intolerances and general mess my gut is in as a result of many years of bacterial imbalance. It seems the mast cells in my gut are in a state of post-traumatic shock, exploding grenades of histamine into my new intestinal flora at the slightest provocation. So far the mast cell stabiliser has not been successful in taming this reaction. But if it doesn't work hopefully the food intolerance de-sensitisation injections will.

This week I stumbled across a great article that summarises better than any I have read, the vicious cycle of gut dysfunction. It told my story. After having been invalidated by the medical profession for so long I almost wept as I read this simple explanation written by a doctor in the US who has dedicated his professional life to people like us.

Leaky Gut Syndromes: Breaking the Vicious Cycle by Dr Leo Galland is mandatory reading for those who live in the 'too hard basket' of gut dysfunction. It clearly explains how bacterial imbalance in your gut is only one part of a vicious cycle that includes mast cells, malnutrition and liver stress. There is no point replacing your poison poo if you don't deal with the perpetuating factors that cause gut pollution and disturb healthy gut ecology. This article will give you clues how to unearth and manage your perpetuating factors and break the cycle.

For me, anti-biotics were the instigating factor behind the bacterial imbalance, but histamine has been the perpetuating factor. Not only is the histamine a reaction to the bacterial imbalance but it perpetuates it. This vicious cycle explains why my first two FMTs failed after their initial success. It also explains why with every flare up of my food intolerances the new poo has suffered and I have had to run for the FMT in my freezer.

Will I spend my life running to the freezer? Will I be dependent on FMT and the goodwill of my donor forever? It’s too early to tell. However it seems clear that I will live in this danger zone until the vicious cycle is broken. I’m certainly feeling a lot better and I am really hoping that the new intestinal flora will give my gut breathing space to heal.

But if this is as good as it gets, then running to the freezer is no big deal I assure you. Pro-biotics are a part of many people's daily regime and now FMT is part of mine. It has become as habitual as brushing my teeth. Indeed it compares favourably to what some people have to endure, such as diabetics injecting insulin daily or those dependent on kidney dialysis. I'm so much better than I was five weeks ago that I really don't care. I have moved from not coping, to functional management of a chronic illness. Great progress indeed.

Don't forget to check out Leo Galland's article and website. He knows his stuff. He feels our pain.

Strumming my pain with his fingers
Singing my life with his words
Killing me softly with his song

Roberta Flack

FMT Clinic in the USA

2011-12-04T09:03:00.003+11:00

For those in the US who are struggling to find FMT treatment the Bright Medicine Clinic in Portland, Oregon may be able to help.

I have started a directory of clinics that will offer FMT to non C-diff patients. At the moment there are only two. If anyone anywhere knows of a clinic in their country that will offer this treatment to patients who have conditions other than clostridium difficile, please let me know and I will add it to the list.

FMT is an idea whose time has come. Anti-biotics are not always the answer. It's time to harness the power of mother nature, rather than work against her. Until the dinosaurs in the medical community catch up with reality, it's up to cyber-sufferers like us to spread the word.

Anything that contradicts experience and logic should be abandoned.
Dalai Lama

To Freeze or Not to Freeze

2011-11-27T09:36:00.003+11:00

The objective of my blog is to encourage and inform. I am concerned that people like us are being left to do backyard FMTs without all the facts. It is bad enough to be sick without having a diagnosis, prognosis and treatment plan. While I can't offer you any of these, I can offer you the benefit of my research, experience and the comfort of knowing that you are not mad, and you are not alone.

Cyber-sufferers like us have been abandoned by the mainstream medical community. We have no choice but to undertake our own research and pursue our own treatment. If we don't share the results, then we are completely alone. I want you to have the opportunity of an informed choice. I want you to avoid some of the anguish and delay I experienced in becoming informed about a treatment that I wish I had discovered many years earlier.

Several cyber-sufferers have emailed asking about my experience with frozen FMT and seeking advice. I have hesitated to give it.

It is one thing to experiment on oneself but another entirely to extrapolate the results to others, without knowing all the variables. This is of course the reason why the medical profession is conservative to fault. Their conservatism ensures that proven protocols are followed and harm avoided. However as we know, this conservatism also breeds blinkered vision and vested interest.

So please consider yourself informed but not advised by the views that follow on frozen FMT. My view is the while fresh is best, frozen works too.

Fresh is Best

The potency and effectiveness of fresh HPI has been demonstrated in clinics across the world. In contrast, frozen HPI is unproven except in mice. Yes, it worked well for me but I am only one person and I also used fresh when I could.

Please consider that your situation may be different to mine. You are likely to have different bugs over/under grown in your gut than me. These bugs may react differently to the freezing process.

Ultimately it depends how desparate you are. The only reason I resorted to frozen HPI was that everything else had failed and it was my last chance at a normal life. I didn't have regular access to my donor and was going to lose my job and house if I didn't do something drastic. I also had experienced sufficiently positive results using fresh HPI to take a chance on frozen.

Frozen Works Too

The research that swayed me was an experiment with mice that showed that frozen HPI took a week to normalise, compared to fresh HPI. This suggests that while all the bacteria may not survive the freezing, their spores (eggs) do. That is my theory and it would explain why the frozen HPI in mice took a week to colonize.

Of comfort is the following paper on Autologous Restoration of Gastrointestinal Flora which gives an interesting (and apparently confidential) picture on the current state of research and commercial development of frozen HPI. The bottom line is that it is only a matter of time before it will be standard practice to freeze your own poo in case you need it later.

I have added FAQs about frozen HPI to my FAQ page. If your question hasn't been answered, please feel free to email me. If you have discovered any other studies on frozen HPI please let me know and I will add them to the links on my website so that others can benefit too.

Good luck with your decision.

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

Exhiliration Rising

2011-11-18T23:15:00.001+11:00

I scramble breathless to the top of the cliff where I have hung for two years. There is a stark panorama below. I shudder at the swirling abyss, the demons of mental dysfunction that so recently threated to engulf me. I recall the lure of sweet surrender - wanting to fall, to give in and let go.

Yet like the limbless knight in Monty Python's Search for the Holy Grail, I had been surprised to find I could lose so much, and still exist. There I remained as my arms and legs fell off, still clinging. A parody of the annihilation of ego that might precede my enlightenment, if only I let it.

I scan the abyss and see others still hanging from their cliffs, alone in their ordeals. I see myself in their pained gaze and recall our fleeting moments of connection. I shake my head, knowing I will never understand a world of suffering. Gratitude overwhelms as I realise I have escaped.

I heave myself to the top of the cliff, to greet life as I knew it. Not surprisingly there is no one there to meet me. Instead there is scorched earth all around: my marriage, my finances, the last of my child-bearing years and many relationships lying in the embers. But this is old news. As I draw a sharp breath I am relieved to see green shoots throughout the charred terrain. I remember that my favourite pass time has always been to tend a garden.

I still possess that which I sought to save: my sanity and my job. Not only have I survived, but by some miracle my health has been returned to me, never to be taken for granted again. But what will a life free of managing ailments be like? Will I know what to do without the desperate daily quest for survival? What will my brain do now that it doesn't have to race against the clock to find a cure? What will it feel like to breathe freely again? What will be the new normal?

As I see signs of new life everywhere I find myself more than a little thrilled to discover a mid life blank canvas on which to draw. Gone is the serotonin deprived fear of new beginnings that has handicapped me for years. I throw my head back and laugh in the knowledge that many would change places if they could.

Suddenly I see my friend in the distance, waving. Some one has been waiting for me!

I feel exhiliration rising as I look forward to a healthy middle age and know my time has come.

Every new beginning comes from some other beginning's end.

Seneca

What a difference a day makes!

2011-11-08T20:56:00.004+11:00

The diarrhoea has stopped !
My brain has cleared !
My PH levels have returned to normal !
I am feeling better than I have in two years !
Fecal transplant WORKS !

18 months ago I faced the choice of taking three times the recommended dose of anti-histamine daily and risking heart damage; or taking Sam-e, a widely tested natural supplement with no known toxicity. As the histamine symptoms worsened, I increased the dose until 3 months ago, unknown to me it started causing the terrible diarrhoea that has plagued me since. Sam-e has been perpetuating a vicious circle and aggravating the histamine it used to cure. Being the Queen of Food Intolerances I should have suspected this, but overlooked the obvious.

The biggest surprise has been that despite the upheaval of the diarrhoea, the poo transplants of the last two months have still worked. Within 24 hours of the diarrhoeh stopping, my PH levels sky-rocketed to normal and I felt human again. Gone are the awful mental symptoms of streptococcus overgrowth that have tormented me for two years. The Demon Within is dead.

Having had such promising results earlier this year with my first poo transplant, I was not prepared to give up on this therapy. I was convinced it would work given the opportunity to have regular infusions - and I'm thrilled to say it has! While my gut has been too sick to tolerate a full FMT I have kept up one tiny infusion daily. I figured it was better to reduce than to stop. I kept the FMT in frozen ice-cubes; little Cadbury soldiers living in my freezer. This guinea pig can assure you that while fresh is best, frozen works too.

The first thing I did when my gut recovered was eat a huge plate of steamed vegetables with butter. This was nirvana after 3 months surviving on potatoes and rice.

I had to take anti-histamine for a few days however to my absolute amazement was able to eat out on the weekend without major repercussion. It was my birthday and my gut felt well. So I lashed out and ate some histamine provoking foods - meat, yoghurt, olives, tomatoes and a glass of wine. Only the mildest symptoms emerged over the next 24 hours. So finally I have the answer to my histamine problem. As suspected, the bacterial imbalance in my gut was causing it. It seems that distressed mast cells in the gut wall have been spewing out histamine in response to the streptococcus overgrowth.

The challenge now is to exercise moderation (not my strong point) and re-introduce foods into my diet without upsetting the new intestinal flora. My new doctor specialises in food intolerances and has prescribed a mast-cell stabiliser that will hopefully ease this transition. The irony is that I have finally found a sympathetic gastro-enterologist only to have come to the end of this journey on my own.

However I am pinching myself to see if I am dreaming. Could this nightmare have ended? Is this more false hope? I will be interested to see the results of the Bioscreen fecal ecology test in a few months time. I will then be able to confirm scientifically, as well as anecdotally, that fecal transplant works.

In the meantime the lessons for cyber-sufferers are:

It's important to look at your problem from all angles. Don't overlook the obvious.
Those of us who live in the medical 'too hard' basket have multiple conditions that obscure diagnosis and frustrate treatment.
Never give up! The solution to your puzzle could be just around the corner.

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

Detour

2011-10-09T16:49:00.001+11:00

Such is life.
Ned Kelly

Something went badly wrong two months ago when my gut dissolved to water. I have never experienced this before and it has not righted itself since. My food goes through me within 6 hours of eating and my gut won't absorb water. There are now only two foods left I can eat and the only thing that helps is to drink less water or take psyllium to absorb it.

The FMT is certainly not to blame as the deterioration happened weeks before starting. But nor has the FMT kicked in and showed the great results it did previously. Clearly the new flora cannot colonise with food gushing through me like a waterfall. After months of battling toxic bacteria, anti-biotics and stress, it's as if my colon has just given up.

So it would seem I've developed another condition. On top of the food intolerances, bacterial dysbiosis, histamine symptoms and mind-gut havoc, now there is Condition X to manage. Tests for parasites and clostridium came back clear. I strongly suspect colitis, which is an inflamed gut wall characterised by inability of the gut to absorb water. Mast cell over activity is often implicated in colitis and would explain the histamine problem. However I'm not risking self-diagnosis and have found a new doctor to start this journey of investigation.

To say I feel deflated is an understatement. It has been a two year journey to get a diagnosis, a treatment and a donor to tackle the bacterial dysbiosis in my gut. Given previous promising results with short term FMT, I was 90% sure a prolonged course would topple the dysbiosis, restore balanced fecal ecology and give me back my health. Yet only weeks away from the finish line I have developed Condition X.

At least there are two cheerful things about having your food gush through you...

Cheerful Thing Number One is that with less food in my body, there is less poison poo pouring toxins into my brain. The mental symptoms have eased. Instead I am just weak and losing weight I don't need to lose. Lest I feel too sorry for myself I am reminded of blogger No Poster Girl's post "Thin Thighs in 35 Years" in which she recalls her chubby thighs before contracting CFS/ME, which has left her so fatigued she is wheelchair bound.

Cheerful Thing Number Two is that perhaps finally I will no longer have to convince doctors that I am sick? As I have discovered, there are legitimate and illegitimate illnesses to contract. Some illnesses are easy to explain and others are not. Seeing your breakfast float through the toilet bowl after lunch is surely a legitimate illness that will gain the attention of the doyens of mainstream medicine? Then again I suppose if their tests draw a dead end they will say it is psychological. If only it were that simple.

As for a cure, I wish I could be more confident. My gut has been through a lot and now seems to be on the proverbial slippery slope. So I'm increasingly directing my emotional energy into harnessing spiritual strength for the journey ahead, which will most likely involve quitting my job and selling my house. At least there is peace in surrender.

Given this latest complication, my FMT journey is on hold while I navigate this detour. However rest assured, if I can treat Condition X I will be back to conquer the dysbiosis and finish my FMT story.

I remain in favour of FMT as I believe it is a safer and more sensible option than pulsed anti-biotic therapy to control bacterial imbalance in the gut. Whereas anti-biotics seek to dominate mother nature, FMT seeks to harness her. Is this not a common sense approach?

In the mean time thank you for accompanying me on my journey into the maligned and misunderstood world of poo, fecal microbiota transplantation and the mind-gut connection. I am proud to have tackled three great taboos in this blog: fecal transplant, mental illness & desperation. I see no reason why I should live in the shadow of people's need to deny that which is so.

I also think it's important that sufferers of dysbiosis are informed regarding their options. The mainstream medical community have clearly failed in this respect. However FMT is not without risk and harm minimisation is the key. So if you are looking for a road map on how to navigate the FMT decision see Is FMT For You?

Thank you to everyone who has written and shared their journey with me. It has been a great source of solace. With each brave cybersufferer I meet, I gain courage and know I am not alone.

When you find yourself going through hell, keep going.

Winston Churchil

Sunny days on the cliff-face

2011-09-04T19:28:00.002+10:00

All truths are easy to understand once they are discovered;

the point is to discover them.

Galileo

On ABC radio this week I heard that scientists have discovered that pro-biotics improve mood in mice. When they severe the vagus nerve, which connects the brain and gut, this connection lapses. So now there is proof of what is happening in my brain.

This cheered me up enormously. There are moments when those of us with invisible 'unproven' conditions feel visible. This was one of them. A scientific explanation for the misery of the last few years. An indication that somewhere out there, some one is researching this wretched thing.

Is anyone else as horrified as I am that so many people are having their lives ruined and their heads medicated for something that is happening in their gut? I guess I am lucky that my mental decline so clearly correlated with the decline of my gut. The connection was obvious.

Last weekend I had three FMTs. On the third day my mood improved and my brain cleared. On the sixth day the diarrhea eased a little. Then it was time for two more FMTs this weekend. This task is now straightforward, particularly with a clearer brain. Was there ever a time when I did not squirt someone's poo up me on the weekend?

A week ago I finally surrendered to the fact that I would have to leave work if I did not gain some relief from this condition. Today, I am back to hanging on to the cliff-face that has become my home over the last two years. This is a good outcome.

I have changed my mind-set about living on the cliff-face. It is an exhausting lifestyle that leaves little energy to focus on the peripheral distractions that pre-occupy most people's lives. But it has become a familiar existence and one that still has quality of life. Like it or not, it is where I live now.

I used to be bitter and angry about those who would see me hanging off my cliff-face and walk away. They did not want the sight of someone hanging off a cliff face to spoil their walk in the sun. Others would stand at the cliff top pointing down. They would lecture me on how to climb back without so much as asking my name, how I got there or if I had tried to get off.

These days my anger has subsided. I no longer herald my plight to people who pass. I know their limitations and do not waste my scant energy on them. Occasionally one will call down 'How are you? Nice weather isn't it?'. 'I'm well thank you. Yes it's lovely!' I call in reply. Sunny days on the cliff-face are my favourites. If the lectures start I turn my face to the sun and ignore them.

In place of anger has come gratitude, because recently more people have stopped to talk. At first they reached down their hands to help, then realised this was impossible. So instead they make time to visit. They sit on the cliff edge, their feet dangling down and they engage.

After having been alone for so long I am surprised at the interest. These visitors follow my progress. They applaud every inch I climb. They call down encouragement when I slip. They stand at the ready to get me supplies the minute I can make it back up to the top. They ask me what I need. They ask me what I don't need. They remember what I say, and they listen.

Most of all they assure me there will someone waiting for me when I eventually get home.

Last weekend when I knew I could no longer hang on, I asked for their prayers or whatever spiritual energy they could spare, to get me through. One friend gave me the gift of his healthy fecal matter, not easy for your average macho male.

Thank you ALL from the bottom of my heart - you have bought me more time.

My mood is still a roller coaster as neurotoxins make their way up my vagus nerve. I reflect on mice in laboratories on the other side of the world having theirs severed to unlock this puzzle.

I remind myself that now is not the time to let go. I now have the demons back on their leads leaving my brain clear enough to be productive at work and keep my mood in its place. It costs me a fortune each day to medicate the gut mediated, systemic histamine reaction that would render me bedridden within 24 hours if left unchecked, but at least I can afford it with a job.

It has been a two year journey to get a diagnosis, a treatment plan and a donor. The hard work is done. Now all I have to do is carry out my plan.

As the brain fog cleared this week, I noticed a sunset, then a sliver of moon and the ecstasy of my dog as she frolicked off lead. These are all things I could not feel a week ago. I look forward to the time when joy will again be in my heart and laughter on my lips.

It is spring in Melbourne and the symbolism of new life abounds. I spotted a banner of wisteria bloom today, bursting from every crevice of the home it adorned. It is the first of many that will accessorise September. Spring is full of so much promise I want to consume it.

There are two mistakes one can make along the road to truth...

not starting, and not going all the way.

Buddha

Home Infusion: Liquid Gold

2011-08-29T20:57:00.004+10:00

As stock markets across the world dissolve, the US faces a credit crisis, the UK riots and Libya falls, the Australian parliament has been in gridlock over whether a parliamentarian once used a credit card to pay for a brothel. One side is trying to force an election and the other is trying to prevent one. We all have our priorities.

My priority on this idyllic early spring weekend has been to conduct a logistic limbo dance by orchestrating a human probiotic infusion, solo.

I am not someone who is logistically challenged. I can always be counted on to get things done, make things happen or manage a project. It's my natural bent.

Yet this has been a challenge.

What do you do, say for example, when your enema bag full of liquid gold is hanging on the wall not draining and you are lying down with a rectal tube inserted waiting for the contents to flow? One of the things you must not do is stand up to shake the bag without holding on to every part of the contraption to avoid a messy spill. Quite apart from the obviously undesirable mess, you cannot afford to lose one drop of the liquid gold you have worked so hard to test, transport and process so that it safety reaches its new abode to do its good work.

I have read reports of others who have tried home infusion. Many struggle with the 'yuk' factor, particularly the smell. Not me. As someone who has not produced a smell like this in two years - I welcomed it. After all, it is Ecoli that makes poo smell like poo. Without it, poo just smells like rotting or fermenting food. So think again next time you recoil. Me, I want to bottle it as liquid gold and sell it.

As I spun the blender into action I knew that in my hands lay a valuable commodity. A bacterially balanced cocktail that could cure thousands. I had raced across town to get it and was privileged and grateful to have it in my home. Later as I washed everything I realised that I needn't even fear the 'germs'. They were here by invitation and I wanted them to stay. Ecoli, bacteriodes, lactobacillus, bifido bacterium. All long lost friends, welcome to stay.

So how am I going? The good news is that my mood definitely improved on the third day, yesterday. I was a different person. The anxiety and tears were replaced by a happy floating feeling and a clear mind. I attribute this to the serotonin Ecoli produces. I considered lying in the gentle spring sun soaking in the joy of being alive, but instead took advantage of a clear brain to go into work on a Sunday and power away for hours. At least this bought me another week. It was nice to feel human again, even if just for one day.

The bad news is that based on my two previous FMT experiences the PH levels should have started improving by now, but haven't. This is critical for me as my problem is with acid producing bacteria, and increasing PH means decreasing bacteria. However my gut is a lot sicker than it was a month ago having recently degenerated to liquid. It seems like there is a new factor at play: a gut which can no longer be bothered. Who can blame it?

So my priority this week as the turmoil in Australia's government unfolds, will be how to coax my gut to try again, just one more time. I have resisted the temptation to scream at it and instead decided to listen to it.

For logistic reasons this FMT journey will only take place at the weekends. My gut now has five days to assimilate the new bugs before we flood it again next weekend. Stay tuned.

If you are considering home infusion the following may assist:

Finding and Approaching a Donor
CDD Home Infusion Protocol- Recipient
CDD Home Infusion Protocol Donor
Is FMT for You
FAQs

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

The Mother of All Battles

2011-08-25T20:53:00.001+10:00

My donor tested ALL CLEAR
Clear for intestinal pathogens.
Clear for balanced gut ecology.
Clear for a whole host of blood borne ailments.

Tomorrow I start my third FMT. The mother of all battles: FMT 3.

My brain is a sea of fog and my gut raw. I run to the toilet in between rehydration stops and dread the confines of a car. I no longer fool myself that I'm 'faking it' at work. People know something is awry. My looks are blank and my mood ragged. I'm at the point where the responsible thing to do is to resign. But with my job goes my house, my self-esteem and the financial means to fight this thing. So I have crawled through to today, my pride swallowed.

Tomorrow I will do something I never do, take a sick day. I will wait for my donor's text message signaling the goods have arrived. I will then spin a miracle potion in a kitchen blender, strain it into an enema bag and squeeze it into my ravaged gut. As the battle begins inside, I will lay back and dream of a normal life again.

We are all mad here

2011-08-20T20:18:00.000+10:00

"But I don't want to go among mad people," Alice remarked.
"Oh, you can't help that," said the Cat. "We're all mad here. I'm mad. You're mad."
"How do you know I'm mad?" said Alice.
"You must be," said the Cat, "or you wouldn't have come here."

-- Lewis Carroll

I never know whether to laugh or cry at the conversations I stumble across online. I used to mine the Internet in search of diagnosis and cure. Now I enjoy the company.

I have found a sense of community. I meet people who have such bad diarrhoea they embarrass themselves in public. I meet people who pass blood, puss and mucus every day. I meet people who are so constipated they have not passed in weeks. I meet people who, like me, are sane enough to know they are losing control of their mind. We are all so lost and yet so determined.

No topic is off bounds in these forums, except perhaps the emotional hell that goes with this condition. I wonder if people are too stoic, too desperate, too embarrassed or just too lost for words.

Together we traverse topics as mind boggling as how to get poo into the upper intestine. Some use nasal-gastric tubes. Some buy capsule machines and make shit capsules (not very successfully). Some squirt it down their throats in syringes. Others just down it with a clothes peg on the nose to quell the stench.

Happiness is relative and I find myself glad that my problem is in the lower intestine. My challenge will be getting the poo up my nether regions, not down my throat.

This week my gut gave up trying to hold anything in. Up until now I have used diet to control the diarrhoea. I have now lost that battle thanks to the advice of two idiot doctors and a not-so-idiot naturopath. The first doctor gave me a new anti-biotic ("this kills strep") and the second, a pro-biotic ("I've never had a patient react to it"). At least the naturopath warned "start with a teaspoon in case you react". I remind myself that this motley crew are the best on offer as the rest think I'm mad.

The only consolation of running to the toilet on the hour is having less poison poo inside me, although my brain doesn't seem to realise this as it is losing more pixels every day.

This week while I developed new strategies to cope with diarrhoea and the waves of inexplicable rage that sweep through my day, the jasmine started to flower at my front door. Then my back door. Each day its persistent scent pierced through the perceptual fog that numbs my senses. It is a symbol of why I must keep going.

My donor passed his second poo test this week. Whereas healthy people have 70-90% ecoli in their gut, my levels are 'undetectable'. However my proud donor has over 90% which is unusual and very promising for me. We are now waiting for the blood tests.

Madness need not be all breakdown. It may also be break-through.

-- R.D. Laing

Tomorrow is another day ...

2011-08-14T21:56:00.000+10:00

This week my demons escaped from their straitjackets at work. Me, I was along for the ride. Helplessly I watched as they unleashed mood swings and swirling brain fog on my unsuspecting workplace.

My boss pretends to hide under the table as my acid tongue unfurls. Today he joked about menopause. Why menopause I wondered? Abashed I realise his quip was directed at me.

Our graduate trainee has worked out that I no longer remember a thing she says. To counter this she diplomatically launches each sentence with "I guess you don't remember but..."

My attention won't focus and my focus won't attend. I spend hours checking and re-checking my work, but the errors do not surrender to interrogation. I am a good speller yet I regularly right [sic] the opposite of what I mean. A kind of grammatical Tourettes.

My body numbs with exhaustion as I force myself to play the game called Act Normal. Yet I don't know this person I have become. It is humiliating to witness myself behaving inexplicably in a job I love.

It hurts so much to see my brand damaged by this condition. Everything I've worked for eroded by this fucking bacteria in my gut. I can only hope that the good will and respect I have built at work can withstand these blows. After all, I am not perfect.

And then there are the deteriorating physical symptoms. My gut crys out for mercy as it relentlessly spews its evil toxins into my bloodstream. Nowadays it takes around 60 tablets of various kinds to get me to work and the slightest variation can unleash a nightmare. I would take a few days off if I knew when I'd be back. The reality is that if I took time off every time I was struggling, I would not have a job.

Yet still I am not the desperate wretch I was in January, when I first did battle with the demons. Pouring out my feelings in this blog has helped, as has meeting others over the Internet who are also doing battle with a beast.

As Scarlett O'Hara observed "tomorrow is another day". Like Scarlett, I have discovered that where there is tomorrow, there is hope. When you have a plan, all you have to do is get through to the next day to implement it.

It is one long week before I get my donor test results. So each day on waking, I remind myself that all I have to do is make it through one more day. As I struggle through work, I coax myself to make it through one more hour. I have heard that’s how those who survived concentration camps and solitary confinement got through. If they can do it, so can I. As long as there is a small voice of sanity somewhere in my head, I can hang on to the person I know myself to be.

As for what will happen if this donor doesn't work out - I cannot allow my mind to go there. I will face that if it happens.

Courage is resistance to fear, mastery of fear, not absence of fear.

Mark Twain

Evenings with Oprah

2011-08-04T07:20:00.006+10:00

I've taken to watching recorded episodes of Oprah. Her talk show may have ended after 25 years but the re-runs live on. A cynical reviewer observed of her new TV network, that even her documentaries focus on triumph and redemption "person survives impossibly bad life journey and lives to tell the tale, better and stronger than before". So what's wrong with that? I ask. The cynical reviewer has obviously never found himself in a situation he could no longer endure.

As I stagger home from work each day I know I am losing this battle. This condition takes no prisoners. When it deteriorates, it plummets.

Half the symptoms are physical, half mental. It is the latter than terrify me. I have been here before and know the sinking feeling of footsteps in the hallway. The demons sneer and snigger as they greet me, like child molesters coming for a fix. As the door opens I raise my hand in protest 'No! No one touches me without my permission'. But I am powerless as they have their way.

I spend hours at work when I cannot work. The simplest task takes forever as my brain stops, starts & stalls. I can't process what people say to me without a pen and paper in hand to force my brain to focus on their words. "Slow down, I can't understand you" I want to scream. So I just fake it and wait for the fog to lift enough to get the work done, making up time in the evenings and on the weekends.

All I can do is count down to the next FMT. But one donor has tested unsuitable and I'm still waiting for final tests for the other. The outcome is two long weeks away.

As I sit here typing I realise that my grasp of the written word is one of the few things that is allowing me to impose structure on my frenzied, addled brain. The words that appear on the page remind me that the person I think I am still exists.

A guy wrote to me and said "thank you for putting into words how a gut full of strep feels". His words remind me that not only do I still exist, but I am not alone.

Each morning I awake with apprehension. Within 15 minutes I have donned my usual attire of self discipline, iron will and perseverance. Each night I collapse into bed and flick on Oprah for an hour before sleeping. I congratulate myself on surviving another day.

I have not failed. I've just found 10,000 ways that won't work.

Thomas A. Edison

Know Your Enemy

2011-07-26T06:40:00.001+10:00

Know thy self, know thy enemy.

A thousand battles, a thousand victories.
Sun Tzu

It has been three weeks since my five day FMT Top Up at the CDD in Sydney. Although I experienced a 50% improvement in symptoms over the week of treatments and 80% reduction in PH, I quickly started going backwards once I arrived home.

This didn't really surprise me as I went there with four times the bacterial load as last time, and only had half as many days treatment. Too bad.

Notwithstanding this disappointment, I have found myself greatly encouraged. I can feel the terror subsiding as I come to 'know my enemy' through research, experimentation and battle. I am no longer at the daily mercy of the demon within.

Battle Lessons

Like Sun Tzu I become wiser with each battle. Having monitored both myself and the enemy, the following lessons will inform my next move:

I have learnt that when you have rampant food intolerances you can't introduce new foods into your diet after the FMT, even if you see improvement.
I have learnt that you must get the bacterial load as low as possible before the FMT, to maximise the result.
I have learnt that FMT works, but long term IBS is idiosyncratic and much harder to beat than a C. Diff infection.
I have learnt that there is no one 'out there' who can advise. This is a frontier illness and I am alone on the battle line, taking risks and fighting for my life.
I have learnt that I am mentally stronger than I thought, and will eventually win the war.

Like a horse near the finish line I can smell victory, but time is running out. I worry that each month I feel weaker and more toxic. Between malnutrition and malabsorption there's not much I can do about this, except keep medicating the symptoms where possible. The problem is that everything I take comes with its own issues and each month my poor gut can tolerate less. Time is of the essence.

Plan D

It is my nature to always have a plan. Plan A, Plan B, Plan C and so it goes. A plan gives me the comfort of having some control over the chaos. A plan gives me hope.

Plan A was to recolonise the intestinal flora via probiotics and Mutaflor. This failed. Plan B was pulsed anti-biotic/pro-biotic therapy. That failed too.

Plan C was two weeks of FMT at the CDD followed by a one week top up three months later. While this ultimately failed, it has been the first treatment to show significant and dramatic improvement.

The Bioscreen tests have consistently diagnosed the problem and my two FMT attempts have confirmed the diagnosis. This is real progress. With the failure of Plan A & B I felt like a bad patient because I did not get better as thousands do. As usual the voice in my head chimed “it’s your fault”. Thankfully Plan C has put an end to that and assured me that I’m on the right track.

I now believe that if you have had chronic IBS for years like me, it is unrealistic to expect overnight cure. You can replace the poison poo, but the battle of the bugs continues. The spores of the bad bugs keep reproducing for months and the leaky gut wall takes time to heal.

Clearly what I need to do now is to get enough healthy poo into my gut for long enough to kick-start a sustained recovery. While the end goal is for the gut to be independent of FMT, this will take time.

I can't afford any more treatments in Sydney or time off work so I'm having two potential donors tested here in Melbourne. The key donor selection criteria have been gender, eating habits, health, mood and willingness to help. If both pass their poo tests, I will alternate donors to inject hybrid vigour into the recovery.

I plan to do daily infusions until the bacterial load/PH normalises. Once it normalises I will reduce the infusions gradually and continue to monitor PH to detect any sign of flare up. I will have regular FMT treatments for as long as it takes to feel back on track and normal again. By having two donors nearby at least I can get an infusion into me as soon as I have a setback.

Chargrilled Vigilance

The biggest challenge will be to resist the urge to eat normally once I start feeling better. To disrupt the growth of the good bugs by creating intenstinal upset, is madness. I must stick to my restricted diet until I have a normal poo test then slowly introduce new foods. This will be the hard bit.

There is so little you can eat when you are amine, salicylate & gluten intolerant plus perpetually on a high alkaline and anti-candida diet. Just a whiff of recovery and I want to do something radical like eat a piece of fruit, drink a glass of milk or eat Thai take-away!

One of the physical symptoms I battle is excess stomach acid, which makes you feel perpetually hungry. I leave work every night with the ever-present torment of gurgling stomach acid despite the many tablets taken to quell it. As I approach the car park resisting the fear of acid ulcers or worse eating their way up my oesophagus, I am bowled over by the char-grilled waft of one of Melbourne's top steak restaurants. What I wouldn't give to walk in there and order one of their outrageously expensive divinely juicy medium rare fillet steaks with garlic sauce. And a glass of chardonnay... or three.

Instead I go home to a bowl of vegetables, supplements and pharmaceuticals. Dressings and sauces are full of amines and must be avoided. The red vegetables are full of salycilates so must be kept to a minimum. One day I will eat tomato and capsicum again, but not now. As I indulge in a dollop of butter and wolf down my vegies, I am grateful that I am someone who actually likes vegetables. I know this restricted diet is my friend. I resolve to stick to it until my gut can digest other kinds of foods without protest.

I have three weeks to wait until the donor test results are back. Then my next battle begins. Stay tuned.

I haven't failed. I have just learnt 10,000 ways that won't work.

Thomas Edison

The Demon Within

2011-07-13T00:05:00.095+10:00

The worst part of this condition is the mind-gut connection and the psychological symptoms. The top 5 symptoms for me and most sufferers are loss of feeling, brain fog, ADHD, anxiety and depression.

The link between high histamine and mental illness has been known since the1960s. What no one seems to know is that this syndrome is caused by gut dysfunction.

High histamine sets off the H3 receptors which triggers mental symptoms by inhibiting the release of a number of other neurotransmitters including dopamine, GABA, acetylcholine, noradrenaline, and serotonin.

Imbalances of dopamine and noradrenaline are implicated in ADHD. In me the ADHD manifests as some brain functions speeding up (logic and focused, linear attention) and others slowing down (memory, observation, creative thinking and lateral, random attention).

Serotonin motivates and histamine moderates. They work as polar opposites neurologically. As one increases the other decreases. In a healthy brain they are balanced as both are critical for survival. However it is not ok to be happy and carefree without moderation or you will never exercise caution.

Histamine stops you behaving recklessly when you are feeling happy. It therefore follows that high histamine leads to high anxiety. Anxiety arises from the over zealous caution and moderation of high histamine. Depression arises from the lack of yummy feelings generated by serotonin and other neurotransmitters. Anxiety and depression are terms used together, but when you are actually suffering from you notice that they are different.

There are four types of histamine receptors and their function is explained in this very good article on the pharmacology of histamine. Histamine receptor antagonists block the action of the receptors and are commonly known as anti-histamines.

H1 & H2 receptors impact physiological conditions, particularly vascular and muscular function. Therein lies the explanation for my hypersensitiviy to cold, migraines, heartburn and fibromyalgia. I successfully treat migraines with H1 anti-histamines and stomach acid with H2 anti-histamines. H3 receptors affect mental health. I have not tried H3 anti-histamines, but you can get them and I have read that they are used to control conditions like Tourettes syndrome. The H4 receptors have only recently been discovered but have been linked with automimmune function, in particular allergies such as asthma and skin conditions.

So how is histamine gut-related? While the neurotransmitter histamine is a biogenic amine, many bacteria that live in the gut also produce amines. While the focus in literature is on histamine intolerance causes by amines in food, eradicating amine producing foods all together has only made a marginal difference to my condition so something else is causing the systemic histamine reaction.

Histamine is metabolised by n-methyltransferase in cells throughout the body and diamine oxidase (DAO) in the gut wall. You can buy DAO in capsule form and this made no difference to my condition, but maybe I needed a whole box full?

Of all the overgrown bad bugs in my gut, it is streptococcus that is madly out of control and linked to mental disorders. I know it produces hydrogen sufite but studies of strep in food suggest that it can also produce amines under certain conditions. Could this be the histamine offending culprit? Clostridium is an amine producing bacteria but having read many health forums it would seem clear that not everyone who suffers from clostridium overgrowth is suffering a systemic histamine reaction like me. Perhaps it depends on the individual?

Or could it be that amines are a byproduct of fermentation in the gut? Putrefaction is the normal mechanism of gut matter, but people with IBS often suffer from fermentation.

The diagram below came from this article which is the best summary I have read on histamine intolerance, despite the fact that it focuses on amines intolerance arising from food rather than the gut. The mechanism is the same.

I am left to wonder if my histamine problem is caused by a) insufficient production of DAO in the gut wall b) overgrowth of amine producing bacteria c) an idiosyncratic allergic reaction or d) fermentation. I suspect all of the above.

I guess I will never know and ultimately it doesn’t matter. All that matters is that it is caused by a sick gut. Fortunately I have the histamine under control by taking a bucketful of Sam-e (s-adenosylmethionine) and Vitamin B daily. This magical formula has kept me at work. It has lifted my brain fog, restored my 'feeling', significantly reduced the ADHD, anxiety and depression and also relieved many physical symptoms.

Sam-e is part of the methylation cycle. Simply put, Sam-e helps the liver get rid of toxins in the body. How it metabolises histamine is illustrated above at (3). A healthy body will make enough Sam-e without supplementation however CFS/IBS sufferers commonly have methylation issues which need to be addressed by supplementation.

As this informative article explains, the supplementation required will depend on which part of the methylation cycle is broken. There are different ways of boosting the methylation cycle, however Sam-e seems to be the most bio-available way to do this. I would suggest that where IBS is a casual factor in CFS, supplementation will also depends on which toxins are spewing from the gut into the bloodstream. In my case the worst offender is histamine but everyone is different.

Sam-e is the miracle that has kept me sane against the onslaught of this condition and saved my job. All I have to do now is fix the gut !

FMT Top Up

2011-07-08T21:17:00.007+10:00

I completed my top up FMT today. It was only a 5 day procedure however the PH levels have dropped dramatically already. I'm being mega-careful what I eat this time. Fingers crossed.

I read two interesting articles while I was sitting around waiting for new poo to grow inside me.

Article 1) Hooray, scientists are finally researching the link between the bugs in our gut and mental health. Better late than never. Does any one else know of any research into this topic? It is so important. Mental illness is bad enough without being treated like you are crazy and plonked on anti-depressants when it's really your gut is the problem.

Article 2) The best summary I have read of Leaky Gut Syndrome.

Donor Doldrums

2011-07-02T22:02:00.016+10:00

I feel like I am living in a surrealist horror movie. People all around me are having a shit each day and flushing it down the toilet, oblivious to the fact that their toxic waste could be my life support.

Is finding a poo donor not the ultimate modern conundrum? Even if you can find someone who seems to be a paragon of good health (no easy task) it's not so easy to find someone who is kind-hearted enough to help, isn't going to freak out at the request, will suffer the inconvenience of the prerequisite tests and finally, be organised enough to remember to bring a take away food container to the loo - and call you to pick up the goods when they land!

I now understand why the CDD recommends their mix of three donors as 'proven'. I guess that's what you pay for: 'Quality Poo With Bonus Anonymity'. Sounds like a great marketing slogan doesn't it?

Hmmm....now there's an idea.

I could repay all the money I have borrowed for my CDD poo transplants by establishing an online donor bank. Wouldn't that take online consumerism to a new level? Just when you thought you'd seen everything...

C. Diff Killer !

IBS Buster !

Ulcerative Colitis Calmer - Special Grade !

Now with Added Ecoli!

Lactobacillus Lite - Weight Loss Guaranteed !

Celebrity Poo!

Now at Half the Price !

Harking back to Marketing 1A, I would differentiate the product so the consumer had the widest choice available but their decision made easy. A ratings system might assist, perhaps 1-5 stars. Pity the product is so perishable, but then again so are milk, meat and bread.

Seriously, this is an idea whose time has come. Scientists are working on freeze-dried poo. Nestle is trying to develop artificial poo. One day we will all have a bottle of capsules in the fridge like other pro-biotics. No need to speculate on the bowel actions of our friends and family or summon the courage to 'pop the question'. Can you imagine that day?

In the mean time if you can't wait for the dinosaurs in the medical community to catch up with your condition, see my links to the Centre for Digestive Disease's Home Infusion Protocol for Recipient and Donor or Is FMT for You?

Good Luck.

3 Months Since FMT

2011-07-01T06:37:00.005+10:00

It is 3 months since my poo transplant. While I had very promising results in the first 4-6 weeks, the introduction of various foods, repeatedly threw me into setbacks. Initially my gut recovered from these setbacks, then started deteriorating quickly. Sadly I am now back to where I started.

Unfortunately I acted on the advice of the Clinic to "eat normally with lots of roughage, and expect ups and downs". However with hindsight I feel that it was way too early to introduce normal foods into my diet. My food intolerances are such that I have been living on a diet of 90% vegetables for over 12 months. Of course it will take time to repair the damaged gut wall and recover from the 'leaky gut' that inflames food intolerances. I should have taken it one step at a time. This has been a demoralising and expensive setback.

Updated Bioscreen results indicate "undetectable" ecoli and overgrowth of various bad bugs with strep the main culprit - being 82% of aerobic bacteria, when it should be less than 5%. This test was taken a month ago and I have deteriorated exponentially since then. With a gutful of strep no wonder the mental symptoms are so bad.

I cannot begin to tell you how REAL the demon of mental dysfunction is. It is almost impossible to talk myself out of it. I am dosed up on obscene amounts of Sam-e, Vitamin B and Alkamax which control the histamine, and low PH symptoms and at least prevent the migraines, brain fog, fibromyalgia and need to sleep all day - but none are containing my mood. The OCD is torment and my resilience has evaporated so the point where a mere ladder in my stocking causes a mental meltdown. The slightest look or word can set me off. I have bitten my tongue until it is raw to control my temper yet still managed to lose it at work yesterday. There goes the professional reputation I have worked so hard to preserve while battling this demon for the last two years. Hopefully my momentary blip will be forgiven and forgotten.

But thankfully there is still a weak voice of sanity somewhere in my brain, urging me to keep perspective and hang in there. I am down but not defeated. I am convinced that FMT was the right decision and that I am on the right track. For a while I felt normal. like a new person. The most objective evidence is that for 2-3 weeks my PH was normal for the first time in the 12 months I have been measuring. I have kept a graph of the data and the correlation is clear. In the absence of regular poo tests, measuring PH is the most objective measure available of the bacterial activity in the gut and it is indisputable that for a while I was winning the Battle of the Bugs.

So on Monday I am returning to Sydney for 5 days FMT 'top up'. It's becoming clear that I need to arrange a potential donor here in Melbourne so that if I have setbacks in future I can quickly arrange a top-up infusion. I cannot afford more trips to the clinic in Sydney or take more time off work. I now realise that full recovery may not come overnight. It has taken years to get into this mess and it's unrealistic to expect an overnight cure.

Stay tuned for a positive report shortly. Please keep the emails and comments coming as it's nice to know there are other people out there also going through this nightmare.

2 Months Since FMT

2011-06-01T20:40:00.002+10:00

What a roller coaster this month has been. At the beginning of the month I felt better than I had in years and achieved normal urine PH for the first time since I started measuring a year ago!

I have sinced experienced a massive setback from trying to introduce different foods into my diet. This was 3 weeks ago and I still haven't recovered. I am disheartened but not defeated.

1 Month Since FMT

2011-05-01T07:17:00.004+10:00

It is four weeks since my poo transplant. This week was better than the last so I’m very happy. I would say around a 30% recovery overall so far, with 2 months to go before I can judge the result overall.

The key milestones are:

Off anti-biotics for 4 weeks – what a relief !
Now able to tolerate brown rice.
Reduced from a diet of 90% vegetables to around 70% vegetables.
Taking less Alkamax to maintain normal PH.
Mood better than it has been in months

I am no longer filled with dread upon waking each day. Instead I pinch myself to see if I’m dreaming! Clearly I have a long way to go as I’m still propped up by Sam-e, Vitamin B and a highly modified diet. But the bottom line is that I am now functioning. Stay tuned.

MY STORY: WARNING

2011-04-23T21:12:00.196+10:00

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