page 43 CFS > NON ALLOPATHIC TREATMENTS > FECAL TRANSPLANT > METHOD

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For a list of Clinics, see here. Many of the clinics listed only treat C Diff but if they are located near you it is still worth contacting them to see if they will consider taking you on. You won’t know if you don’t ask.

 

Note that in the USA clinic-assisted FMT has been halted for everything but antibiotic-resistant C Diff. This should only be temporary until the FDA completes its investigation. It does not stop your doctor from doing donor screening or advising you how to do FMT at home safely.

 

If you have decided to go with DIY Donor FMT then don’t jump in too quickly. Take the time to make a list of your requirements.  Finding a suitable donor in a world where people poop daily is not as easy as it may seem. But nor is it as difficult as the screening process coupled with the embarrassment factor might suggest.

 

Be in no doubt that “all poo is not created equal”. Someone with no history of gut problems can still carry bugs in their gut that create other conditions in their body. Something as seemingly unrelated as acne, thrush, UTIs, fibromyalgia or mood swings can be linked to dysbiosis in the gut. People with heartburn, allergies and autoimmune disorders are definitely out. There are links between all of these and gut dysfunction.

 

Write a ‘must have’ and ‘wish list’ to screen your donors. Remember to be practical. Fresh is best so ideally your donor will need to live nearby. They must also be predictable in their bowel movements and willing to help. You need a donor who will not add to your stress by being unreliable.

 

At a minimum your donor must have:

• regular bowel movements that are firm and formed but not hard
• good general health
• good digestive health
• not prone to gastric upsets
• no history of anti-biotic use
• no regular use of anti-inflammatories or painkillers (occasional is ok)
• no sign of a mood disorder

 

For tips on how to find and approach a donor see here. For a donor screening questionnaire see here. For the minimum testing of a donor see the list of  Consensus Guidance Tests issued jointly by the US AGA and other organisations.

 

Some clinics recommend additional testing. Here are some examples.

 

OpenBiome (USA)

 

Bradstreet protocol (USA).

 

Taymount Clinic brochure (UK)

 

CDD Home Infusion Protocol for Recipient and Donor (Australia)

 

Some patients also obtain fecal diversity tests through naturopathic practitioners.

 

Step 5

 

Test your Donor

 

It is tempting to skip the testing as it takes time, is expensive, will inconvenience your donor and involve your doctor. It is also easy to assume that because someone is healthy they will make a good donor. Think again.  In the Facebook group you will meet many people who have tested potential donors only to find they were carrying asymptomatic parasites. While a parasite might be benign in a healthy person’s gut you don’t want to risk the havoc it might wreak in your fragile gut.  Test your donor.

 

Step 6

 

DIY – Fecal Transplant at Home

 

DIY is not difficult once you know how.  See these DIY  Instructions and the FAQs.

 

The FMT sample should be used within 2 hours of leaving the human body and kept at room temperature until you are ready to use it. Frozen FMT also works but may take longer to colonize.

 

Step 7

Talk to Your Doctor

 

stool sample Be aware that FMT is not yet a widely used procedure and is most commonly used to treat Clostridium Difficile.  While the research on C Diff is conclusive, there still needs to be more research on other conditions. So if you have a condition other than C Diff your doctor will not necessarily feel comfortable referring you to a FMT clinic or testing your donor. You may be made to feel like a ‘bad patient’ who should ‘just learn to live with’ your illness.

 

It is up to you to make your case in a way that gives the doctor comfort you have thought through the issues and will not hold him/her accountable if FMT doesn’t work.

 

Before you see your doctor, do your research and prepare your case. If you’re a good talker, talk it through. If you’re a good writer, write it down. If necessary recruit a friend or family member to be your advocate. Be prepared.

 

It’s important to stress that lack of research doesn’t mean FMT won’t work – or that it will harm.  It just means the science hasn’t caught up with the treatment.   Ultimately it is your decision if you want to take a chance on a treatment that may not work.  Let’s face it you have tried many treatments that haven’t worked which is why you are now having this conversation with your doctor. A reasonable doctor will recognise this.  If they won’t, then listen to their reasons and if they are not convincing find another doctor. You are the person who has to live with this condition, not them.

 

Read these interviews with a medical doctor and a naturopathic doctor, both who practise FMT

 

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. Finding and approaching a donor 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. The reality is that there are no perfect donors and you may be taking a risk with whomever you choose. The trick is to minimise the risk 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 if you are in the third group, how do you find someone, when you have no one? And how do you approach him/her?

 

If you have been sick for a long time you may have become socially isolated. 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. While there is now a donor bank in the US for those who have C diff, those is other countries or with other conditions are not so fortunate. So here 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 unprecedented 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 with chronic illness travel.

 

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”.  Think again. They may not 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 c) the request is accompanied with an easy-to-understand news article or video clip explaining FMT.

 

Example

 

Your aunt is an unsuitable donor as she has diabetes and is on medication for indigestion.  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, just less invasive. She explains that although the procedure is not yet commonly available through mainstream medicine, it is slowly gaining 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 consider being a poop donor?

 

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 may 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 – Religious or Community Service Organisations

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 someone 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 – People From Your Past

Join social networking sites such as Facebook, LinkedIn or old School/University sites and search for someone with whom you were once close but have lost contact.  Ex partners are a good option as you have probably already exchanged bodily fluids so the request is not as embarrassing.

 

How you approach them will depend on the kind of relationship you had. You will obviously have to see if there is still rapport before popping the question, but rather than trying to rekindle the friendship with an agenda in tow, it might be best to simply write a sincere email asking for help. The worst they can do is say no and you’re never going to see them again anyway. Check out this template for help with an email.Remember you are not looking for a best friend, you are looking for healthy person, with a kind heart.

 

Idea 4 – Advertising

We live in a world of instant gratification. When we want something, we go and buy it. Why not pay for a poop 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 possibility. For example, Advertising in the science department of a university might attract young healthy donors who aren’t deterred by the ick factor.

 

The way the world is, an advertisement for a paid fecal transplant donor might attract every nutcase alive. So what? If only a handful of genuine people respond, one of them will be likely to be a suitable donor. It worked for this woman.

 

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. You need to come across as sane enough to ensure credibility, while needy enough to evoke compassion and an urge to help. None of this is easy, but it’s nigh 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 badly 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.

• 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 only less invasive.

• The idea is for the infusion of ‘good bugs’ to conquer the ‘bad bugs’ and gradually restore good health.

• This treatment is not yet mainstream but is gaining acceptance in 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.

• Here are some donor stories telling why they decided to help.

• 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?

• Also include a link to an article or video clip about FMT – there are plenty to choose from on the research page. If  writing isn’t your thing, try this template which can be edited to suit your situation and relationship with your potential donor.