US Food & Drug Administration classifies FMT an Investigational New Drug

It has been a glum week in the FMT facebook group this week following cancelled FMT procedures in the wake of the FDA’s classification of FMT as an Investigational New Drug (IND).  This decision was confirmed in a letter from the FDA to the American Gastroenterological Association.  The AGA is now providing guidelines to members regarding the IND procedures.

On May 2 the FDA held a workshop with interested practitioners to discuss FMT. A copy of this powerpoint presentation outlines the FDA position. The effect of this decision is that FMT is now in Phase 1 of a 3 phase approval process and is not to be used by physicians other than in life saving situations subject to a formal IND application. IND Application forms and more information is available on the AGA website. The AGA states:

Because FMT is not approved for any therapeutic purposes, an investigational new drug (IND) application is needed for the use of FMT to treat any disease including C. difficile infection. AGA will work with the FDA to help ensure patients who may benefit from FMT will be able to gain access to such treatments in a timely manner.  

The post on the AGA website seems quietly optimistic about FMT and the AGA has undertaken to assist physicians with IND applications.  It has also recently established a Centre for Gut Microbiome Research & Education which I suspect will be the beginning of big re-think about the liberal anti-biotic use that has been a big part of most of our illnesses.

As frustrating as the cancellation of procedures is for the individuals concerned, overall the FDA decision is a significant step forward in the journey toward legitimacy and safe accessible FMT for all who need it. 

If you live in the US and you or a loved one are suffering from a life-threatening case of C Diff, rest assured there is still help at hand. If your doctor is unaware of the IND application procedure refer them to the AGA website. 

While FMT doctors may not be able to perform the procedure for you, they can still help with testing.  Dr David Shephard of RDS Infusions in Florida writes:

We are very disappointed with recent FDAs position on FMT. Our Success for C diff patients is 100% so far and for UC it is in the 70-80% range. Because of our success we will continue to offer the infusions in any way we can despite the FDA's hurdles. Please visit our website at DSINFUSIONS.com and check out testimonial page. We are here to help!!

If your condition is soul-destroying but not life-threatening, don’t lose heart. There is still the DIY option and if you have the funds, clinics in the UK and Australia.  Remember that just because a doctor can't perform the procedure doesn't mean they won't screen your donor. Most doctors understand the concept of harm minimisation, so if you are determined to do DIY FMT you will eventually find a doctor who sees the sense in helping you to avoid the risks of an untested donor. 

The key to persuasion is a calm, well-researched presentation in the context that you have already tried mainstream options without success.  If this kind of presentation is not your thing then recruit an ally within your social circle to help you or join the FMT Facebook group where you will find a smart, supportive bunch of people who will give you tips and help you develop a strategy. Whatever you do, don't give up. You and your quality of life are worth fighting for.

First they ignore you,

then they laugh at you,

then they fight you,

then you win.

Mahatma Gandhi

Want to chat to others about FMT? Then send a friend request to Sally Brown. The group is hidden so only your friendship with Sally will show on your profile.

Michael's Success Story

Michael K Hurst - Cured of Ulcerative Colitis from Fecal Transplants summer 2011. For additional details about Michael's story or to contact him see his website FecalTransplant.org

What % better are you?

I am 110% better, I’m actually better now than I ever was at any point in my whole life. For the first time in my life I regularly have solid stool! I consider myself cured since I have maintained remission for 16 months with no maintenance medications or special diets while still having my colon intact.  I use this term of being cured since there currently is not a medical definition for no signs of the illness for an extended period of time without maintenance medications, so Dr. Borody suggested a scenario like mine could be considered a cure and having that as a goal was a big part of my motivation.

Brief summary of your condition and treatments you tried pre FMT.

I was diagnosed with Ulcerative Colitis just before my 21^st birthday in June 1999 to July 2011 when I consider myself cured. The flare started while traveling with my family in South Africa with irritation in my eyes and then bloody diarrhea. No one else in my family became ill, and a stool test did not reveal any known pathogens. After Asacol and 60 mg of Prednisone failed to bring my flare under control the addition of Cipro helped bring it into remission. 

Over the years I tried almost everything including Asacol, mesalamine suppositories, Prednisone, 6mp, Remicade, diets, pro-biotics including VSL#3, fish oil, Butrate Enemas, Flagyl. I was scheduled to have surgery when I found out about FMT or Fecal Transplants when I first heard about this from an article in Slate.com

When did you have your first / last FMT.

I started in the 2^nd week of June 2011 and stopped in the 3^rd week of July, about 5 weeks of daily enemas.

How many FMTs did you need?

I did one every day for 5 days, however in retrospect I don’t think that was necessary.  I think if you can slow diarrhea and calm muscle spasms that increasing the effectiveness of the transplanted bacteria so they can work much faster. However even after the new bacteria are established there is going to be continued time to heal with some ups and downs. For me a big breakthrough was about 6 – 7 weeks after I had started doing these.

Were there other perpetuating factors in your illness?

Yes, it turns out the reason I was not healing between flares toward the end was low albumin levels in my blood. Not enough protein to heal damaged tissue. I attribute this to special diets and also the duration of extensive ulceration in my colon. I also realized that emotional stress / depression played a strong role too. It wasn’t until later while doing the fecal transplants how much of an impact it had for my case.

How and when you first heard of FMT.

A Slate.com article called “The Enema of my Enemy is my friend” about FMT for Clostridium Difficile–related Colitis. Then 3 days before my surgery date I read about it being used for Ulcerative Colitis on Wikipedia which referred to “Treatment of Ulcerative Colitis using Fecal Bacteriotherapy” by Dr. Borody. Those results compelled me to cancel surgery to explore this option.

The factors you took into account when deciding to ‘take the plunge’

Borody’s article which documented 6 patients who were essentially “cured” blew my mind and convinced me. I really had nothing to lose at that point, other than my colon and what I saw as a significant impact on my quality of life. I then researched possible risks and realized that by taking basic pre-cautions the worst that would probably happen to me was to be right back where I already was, facing surgery.  From the moment I read that article I was confident it could work for me, after talking to Sky Curtis and hearing her story I was even more certain and also realized that I could do this myself.

The criteria you used in choosing a donor and testing you had done.

After talking to a mentor who had done this, I decided to take her advice and plan to do the fecal enemas over a long period of time. Actually I was ready to go indefinitely if that is what it took. I decided to go with someone outside my immediate family because there was a family history of IBS and I also wanted to continue living in the Washington, DC area. I asked a good friend of mine who had been one of my best clients in my dating coach business. I knew he was open-minded and healthy so I thought I’d give it a shot.

How you approached your donor and their response.

My donor had just come back from a week-long spring break trip since he was a teacher so I asked to go hiking near Great Falls. He was aware of my illness, especially since one time I actually pooped my pants while out coaching clients at a swanky bar! I told him about how I had found out about FMT and why it would work. 

After cracking some poop jokes, I asked if he would be willing to be my donor. He agreed that asked him if he would like to do it and also get an apartment together as roommates. I assured him that he would not incur any out-of-pocket expenses, nor have to undergo any invasive procedures. 

He responded “So you just need my (poop)? I really wasn’t going to do anything with it anyway, so sure thing if you think this can make you healthy.” I had him complete the questionnaire and then we got an apartment and went from there.

The result and the aftermath – what was your FMT experience like?

There were many funny stories like the first time I tried to mix poop in a blender I didn’t put the blender together properly and that (stuff) went everywhere. Fortunately I had lost my sense of smell over the years. Sometimes when my donor and I weren’t at home at the same time he put some poop in a Glad Ware container in the fridge. If other people were around he would say he had a “gift” for me.  While some people like to keep things like this private I enjoyed the reaction from telling people sometimes. While I go into more detail in my book here is a brief summary.  

The enemas themselves went pretty well, especially if I took Immodium an hour beforehand. I would lie on my side and read or even drift off to sleep if I did them at night. I was off Prednisone at the time and my symptoms started improving rapidly. But then I stopped taking Apriso and a flare developed. After trying to avoid going back on Prednisone I finally went back on it. My sense of smell returned, whew it does stink, better rub some Vicks under your nose. My mentor encouraged me to keep going, she said it gets better again. I was feeling discouraged about the flare and stopped the enemas after going to my GI doctor to get more Prednisone, however I planned on going back to doing the enemas after a week or two.  

However I began to search for more options. I made an appointment with a psychiatrist I had seen on and off over the years for ADHD and started taking Bupropion and Silenor. The next day I had mostly solid poop! The diarrhea completely stopped. This was about 6 weeks after I had started them and about a week to ten days after I had stopped doing them. By the end of 10 days I had completely tapered off Prednisone from 40 mg a day. About 8 weeks later, 14 weeks after starting FMT I had a colonoscopy which revealed patchy healing of intestinal walls that had been chronically inflamed for almost 12 years. The GI doctor thought the illness might be changing to be more like Crohn’s Disease, but I am convinced that it was healing which matched my physical symptoms of being healthy.  

By December I stopped taking Apriso and have not taken any drugs that are prescribed to treat Colitis since that time or anti-biotics. Although I do continued to take anti-depressants as necessary and use Valerian root extract for sleep which I found also helps stool be more formed and have more bulk.   

Advice on dealing with the fear and risk (perceived or real) around FMT in the face of scepticism by many people’s treating doctors, friends and family.

I ran into a lot of this along the way. Basically what got me through this was I had gotten to the point in the illness where I had run out of options. My doctor only gave me surgery as an option.  However I also researched this and realized that if you thought about this logically and looked at the actual facts, most of the bad things that people worried about simply were not true. Even the possible risk of illness could be mitigated using the questionnaire and by testing. 

Also realize that doing the fecal enemas is not that bad. Afterall the illness caused me to poop my pants with bloody diarrhea at times!  Not to mention the near chronic “toxic” gas that I had. In addition to that realize this even if it seems almost impossible to believe: this is a permanent cure. After years of having doctors tell me this was an incurable condition it was hard to believe. But Dr. Borody’s patients did it, and so did I! Trust me if I can completely heal from severe pan Colitis which a doctor said I could not ever heal from then you can do it too!

Comment on the emotional journey you went through and what sustained you.

I mostly tried to suck it up and focus on living my life just like anyone else and be thankful that compared to other illnesses or injuries I could possibly have, I looked physically healthy on the outside even if not on the inside. There was denial, I enjoyed being a single bachelor and didn’t let this illness stop me. Then there was depression and despair before deciding on surgery. Then optimism that surgery would make me healthy even as I dreaded it and wanted to avoid it. Then extreme optimism combined with fierce determination when I found out that fecal transplants could work for this. I was determined to make this work and give it every thing I had as if my life depended on it.

The Top 3 things you most love about your post-FMT life.

1. No more diarrhea, blood loss, extreme gas, never ever!

2. No more crippling medical bills and secondary illnesses or side-effects.

3. I can tell the doctors and other doubters that I was right.

The best advice you can give someone trying to make a decision about FMT 

Just do it and don’t let the naysayers stop or discourage you. It’s your life and your body (or those of your children or loved ones.) Do your own research as necessary and realize that the risks are minimal compared to other treatments and continued illness, the treatment itself is quite tolerable and is temporary not forever. Ultimately be willing to take the plunge because it is so worth it, so empowering to be free of this illness!

For additional details about Michael's story or to contact him 

see his website FecalTransplant.org , his YouTube video and his book.

Kathy's Success Story

Hi, I’m Kathy, mom to a nine-year-old girl diagnosed with Ulcerative Colitis in January 2012 and successfully treated with FMT.  I don't want to know where we would be now if we hadn't tried it, or if it hadn’t worked.  We went through seven months of hell trying to get her better before we started FMT.  Here’s our story:

E's symptoms appeared out-of-the blue.  On Christmas Eve 2011, she called me into the bathroom to look at her wipe, which had some blood on it.  Over the next few days, we noticed that her stool, though completely formed, had some visible blood coating the outside of it.  I didn't make too much of it, which is surprising since I tend to be a bit of an alarmist when anything seems out of the ordinary.  I thought that she had picked up salmonella after playing with a lizard in the yard and that the blood would resolve, and we would move on with our lives.  I was totally wrong. 

Within three-and-a-half weeks of the onset of bleeding, E had a colonoscopy, which showed inflammation in her colon.  E was diagnosed with IBD, and more specifically, Ulcerative Colitis (and even more specifically, proctosigmoiditis).  The good news, or so I thought, was that only her rectum and sigmoid colon were involved.  The doctor thought so, too and said E would have to be on Asacol for at least a year, but that it should work to control the symptoms.  At that point, I didn’t know anything about IBD, including that it was considered an autoimmune disease whose only “cure” was a colectomy.  Yikes.

Well, Asacol didn’t work.  And neither did sulfasalazine, flagyl, prednisone, mesalamine enemas, hydrocortisone enemas, cortifoam and canasa suppositories.  What?!?!  How could that be?  Well, apparently, there are cases of UC that are refractory, or not responsive to medication.  But, at that point, we hadn’t hit the big guns yet — 6-MP or Remicade, so we weren’t there yet.

In the meantime, we met with a surgeon.  He told us that E might need a colectomy.  It was the worst appointment of our lives.  He wasn’t nice or compassionate.  It seemed like he just wanted to cut open my kid and take her colon—no big deal.  E said there was no way she was having her colon out.  She said she didn’t need the surgery.  I wanted to believe her, but I wasn’t sure we were going to be able to beat this thing.  With more and more meds, she was just getting worse and worse as time went on.  Her hemoglobin and hematocrit started dropping.  She was getting more and more tired and lying around the house instead of climbing trees and running around.  She was looking terrible.  She was waking in the night to use the bathroom.  I felt like I was losing my daughter.

I had been frantically doing research all along, searching for alternative things to try.  We tried various supplements—bovine colostrum, homeopathic phosphorus, turmeric, fish oil, cod liver oil, vitamin D, VSL, Chinese herbs— acupuncture, and two diets—SCD/paleo/GAPS (though admittedly we only followed it about 90%) and Jini Patel’s “stop intestinal bleeding diet”.

I first heard of FMT from a good friend of mine before E was even diagnosed with UC, when the bleeding had first started.  I remember being so afraid to try it.  I didn’t want to put anything in her rectum or colon for fear of making things worse.  I couldn’t bear the thought of hurting my daughter more than she was already hurting.  And I always thought poop was kind of dirty — I mean, we wash our hands after we use the bathroom, after all.  Our doctors didn't know anything about it and pretty much changed the subject when I brought it up at appointments.  So, I went ahead and purchased a home FMT protocol online.

Then, I researched more and looked for support from other parents whose children have IBD.  FMT looked to me like the most likely treatment to help E.  I learned that people were doing FMT for UC and were being helped by it, but many were doing it without support from their doctors.  I knew Borody’s research, I read about the Bright Clinic in Oregon, and I was in touch with someone who had successfully done FMT for his seven-year-old son.  I read countless IBD forums.  I learned that healthy stool is full of healthy bacteria and that if put into the colon of a person with UC, the bacteria would recolonize in the sick person’s colon and help it heal by restoring the balance of bacteria that was likely out of balance.  But, I was wary about doing FMT without the support of our doctors.  We were dealing with a child, and I was terrified that if I tried something like putting someone else’s poop into my daughter’s colon and she got sicker, I would get in some serious trouble.

In April 2012, we had plans to travel 1000 miles for a second opinion at one of the top pediatric IBD centers in the country.  The day before we left, E’s bleeding was getting worse and worse.  Her tummy was aching, her knees were hurting, and she literally had to run to the bathroom every couple of hours.  The bowl was red every time she went.  I was a mess.  We decided to give 6-MP a try, since our doctor at home assured us that our second opinion would give us the same advice.  I felt that if she didn’t get better soon, we were going to be in trouble.  So far, we had been able to keep E out of the hospital, but just barely.  Every few days we were talking with the doctor, deciding whether to hospitalize her or try to keep her home.  It was torture.

At our second opinion appointment, the doctor confirmed what our doctor had said, but he also had statistics.  There was a 50% chance that 6-MP would work for E, and a 60% chance that Remicade would (and even if Remicade worked, there was no guarantee it’d work forever).  And that was the end of the road.  If neither of those medications worked, her colon would have to be removed.

Shortly after, we decided to try FMT.  I got the ball rolling on getting E into the first U.S. clinical trial for FMT in children.  It turned out she was a good candidate.   Unfortunately, the timing didn’t work out.  We could tell by her blood work that she wouldn't be likely to stay on 6-MP even though her symptoms had improved quite a bit.  In the end, we decided to take advantage of her improved status on 6-MP and try FMT before she had to discontinue it.

Fortunately, with some pushing and pleading we finally persuaded our doctors to support us in FMT.  They gave us a protocol (it was the protocol for C. Diff written by Silverman) and a list of blood and stool tests for the donor to have done.

We wanted a donor with good digestive and overall health.  My husband has IBS, so he was out.  I have always had a good gut as far as I know, but I still had all the tests to make sure there were no hidden problems. Two months prior to my first donation I was on antibiotics, but it doesn’t seem to have affected the quality of my donation. 

We started FMT in August last year. We began with a 10 day triple antibiotic therapy followed by 5 consecutive days of FMT, followed by twice-weekly FMT. Within 24 hours of the first enema what little bleeding there was had stopped. Within 3 months, E’s bowel movements reduced to 2-3 times daily.  Throughout we have continued with sulfasalazine and FMT twice a week. E continues to do just great and her labs look awesome.  The biggest improvement we saw in the labs was six months post-FMT when her calprotecin had dropped from a high of 1014 when she was flaring to her current level of 60.1.

It’s now seven months since we started FMT and E is 90% better.  We are still doing FMT twice weekly and E still has some minimal food restrictions, which is why I don't say she is 100% better.  She says she feels better than she ever has.  She looks beautifully healthy.  We have kept up the FMT because we believe the intestines take a long time to heal, and because we don't think it can hurt.  While we have faith in the treatment, we don’t want to stop it yet, either.

My advice for people considering FMT is to talk to others who have done it and to try to find a doctor who will support you, if that’s important to you.  After doing all the research I did, I felt very confident in the potential of FMT and strongly believed that we had nothing to lose by trying it.  When the top researchers in the country told us that the best they can do is give your child a dangerous drug that has a 60% chance of working or they can cut out her colon, which has countless potential complications, I felt it was time for us to look at other options, and FMT seemed to be the best one by a longshot.

My daughter was only sick for seven months, but it was the worst seven months of my life.  I cried every day for six of those months.  People kept telling me that she would get better, but I stopped believing them.  But then, we fixed her.  WE brought her back to health!  And now our doctors are trying the treatment on other patients, and a family member who is in pediatric gastroenterology convinced her boss to try FMT on patients (they have done two so far!)  There is no greater feeling than, even in some little way, to help someone regain the health of his or her child.  What a roller coaster it has been — we went from feeling completely lost and scared to feeling like we can point people in the right direction and optimistic that our daughter is going to remain well.

The best advice I can give someone trying to make a decision about FMT is that you will know if and when it is time for you to do FMT.  Nobody can make the choice for you.  We are all on our own journeys and have to find our own paths.  There are many ways to wellness, and FMT may be yours.  There are people out there doing it and doctors are starting to do it.  But, these things are slow to get going in the medical field, and sometimes time is not on your side.  It certainly wasn’t for us — we just did our research and did what we felt we needed to do for our child, and FMT was it.  While it can be overwhelming at first, the prep is easy and the administration is even easier. I would do FMT every day for the rest of my life if that is what we needed to do.

If you are the parent of a child with UC and need support in making the FMT decision, Kathy is willing to help. Please email me and I will forward your details to her. 

Want to chat with others about FMT on Facebook? Then send a friend request to Sally Brown. To protect your privacy only your friendship with Sally will show on your profile.

Gut Intelligence Survey

Do you get frustrated by being a digestive illness orphan without medical diagnosis? 

Do you have a UC/Crohns/Diverticulitis diagnosis and get frustrated by the medical community's enthusiasm for pumping you full of drugs that cause more problems than they solve and the looming spectre of having your colon cut out? 

The purpose of my blog and others like it is to reassure you that you are not alone and work together to find answers.

Carolyn May is an impressive survivor of GI illness. She recently launched a self-help website called Gut Intelligence which has been set up by patients, for patients. Gut Intelligence aims to help patients with chronic gut disorders by pooling our collective wisdom to research and share dietary and other approaches that have worked.

In particular the GI Team are very interested to explore if there are common factors which make these gut disorders more likely to occur. They are currently conducting a survey that they hope will stimulate future research to prevent these disorders arising in the first place.

To take the Gut Intelligence survey click here. 

Individually, we are one drop. 

Together, we are an ocean. 
Monah Nabwe

Want to chat with others about FMT on Facebook? Then send a friend request to Sally Brown.  The group is hidden so only your friendship with Sally will show on your profile.

How Not to Say Offensive Things - Part 2

The slogan of people with visible disability is “See the person, not the disability.” When it’s invisible illness it’s important to “See the person, acknowledge the disability.” 

If you’ve survived Part 1, here is Part 2 of my rant on the Top 7 Offensive Things people have said to me about my illness. 

4.    Look on the bright side

Yes I know children are starving in Africa and I should be grateful that at least I have [ type consolation here … ]

Call me harsh, but surely it's up to me to pipe up with the "there are people who are worse off' line?  I am indeed genuinely grateful for everything I have. The more I lose, the more gratitude I discover. But it is zero consolation when someone else points this out. I can point it out to myself thanks very much. 

A variation on ‘there are people worse off’ is ‘everyone has something to deal with’ and ‘things happen for a reason’. If that’s what you believe, fine. But don’t insult the sick person who is struggling to get through every day and wondering whether it is all worthwhile, by triviliasing their illness and telling them to look on the bright side.

5.    Uninformed advice

The best advice I receive is informed advice that takes into account the long journey I've been on. The worst advice is uninformed, ignores where I've been and assumes there is a quick fix to my condition that I stupidly haven’t considered. 

Those remaining in my life know I’m an encyclopedia of digestive illness and loathe being patronised by people with so-called good intentions. So beware if you read an article in a women’s magazine about Yakult and feel the need to insist that I try it, because the odds are I’m streets ahead of you.  At least engage in my journey for a nano-second and take the time to ask 'have you tried it?" 

Don’t get me wrong, if there's something I haven't considered I DO want to know about it and will be forever grateful if you stumble across the Silver Bullet I haven’t. However context is everything and the proverbial road to hell is paved with good intentions. It seems that others want to wash away the discomfort they feel around your illness by offering a quick fix so they can feel like they've cared - and move on. If they really wanted to help, they would stop and ask.

6.    Try to Relax / Meditate

Like Forrest Gump and his box of chocolates, people with digestive illness never know what they’re going to get. The end result is that our days are often a physical and mental roller coaster that follows the digestion of our food. Each twist and turn must be deftly negotiated or we crash. Add to this the unpredictable mood swings and fatigue that go with digestive illness and we often end up a mess.

There is nothing relaxing about life on a roller coaster or the financial, employment and relationship challenges it poses. Try meditating on a roller coaster and see how long you last.  If you are a sick person who has managed to do this I applaud you, but it’s not possible for everyone.

Not Saying Offensive Things means feeling the person's pain without needing to fix, judge or run away. It doesn't mean you have to carry their pain, but do the person you love a favour and don't invalidate what they are feeling. It's hard enough to talk about the journey of invisible chronic illness in a world that thinks there is nothing wrong with you because you don't have a satisfactory label and look perfectly normal. 

7.    You don’t look sick

As they say in TV News:  No Vision = No Story.  

I have learned that no matter how often I try and explain my invisible illness, words cannot replace the appearance that I am well and coping. Nothing reinforced this like the YouTube farewell message from author Bryce Courtenay who looked and sounded remarkably well only a week before dying of stomach cancer. 

Invisible illness has opened my eyes to the many lives of quiet desperation lived by seemingly normal people going through all manner of private hell.  People with invisible illness live in a world that expects us to cope, so we do. We try to avoid unleashing too much of an emotional burden on our loved ones when there’s nothing they can do to fix us.  We also fear that many relationships would not withstand the truth. 

Yes we often seem well. That's because we choose to engage with others when we’re coping, not when we’re falling apart. Yet coping is not as easy as we make it look.  Should we have to collapse in a screaming heap to have our limitations taken seriously?  No. It would be embarrassing for us, awkward for those involved and serve no purpose whatsoever.

Yet when we do tell how it is, our reality is so often deflected in the form of uninformed advice, look on the bright side, an invitation to dinner or to go and get laid (!)  Not to mention those who simply disappear. In the face of this we have little choice but to stay silent or isolate ourselves from those who have proven unable to listen and unwilling to ask.

The people I'm most grateful for are those who accept me the way I (now) am without making a fuss. They don’t judge me, try to fix me up or ask me to do things I can’t enjoy. Common to these relationships is mutual respect of boundaries. They respect my independence, remember my limitations and check in occasionally to let me know they care. In turn I respect that they have busy lives, avoid burdening them overly with my illness and don’t expect them to fix my problems. 

Advice for friends partners & family?

The next time you feel like telling a chronically ill person that they seem fine, phrase it in a way that acknowledges how they say they are, not just what they look like. Acknowledge the inner daily battle they endure.

“You seem fine, you do a fantastic job of coping.”
“You look well, you are doing a great job of holding it together.”
 “You seem fine, so please tell me if I can help because I would like to.”

The sick person will then have space to respond “Well there are worse things / everyone has something to deal with / things happen for a reason etc - if they want to.

The best advice I can give to friends, partners and family to support a loved one with a frustrating invisible illness is to deal with your own emotions first. Fix yourself up before you start on them. If you don’t find a place for your emotions, then you are likely to inadvertently dump them on your loved one. So whether it be powerlessness, grief, denial, martyrdom, resentment, rage, frustration, disbelief  – acknowledge it and put it in a place where it won’t sabotage your relationship. If necessary get professional help or join a support group. Write a blog.  But don’t inflict it on the sick person in your life.

Of course if someone takes advantage of your kindness, you may need to set boundaries. But most sick people know it’s their job to take care of themselves.  We just want acceptance and a sympathetic ear occasionally. 

How Not to Say Offensive Things - Part 1

I used to think the worst thing in life was to end up all alone. 

It’s not.

The worst thing in life is to end up with people who make you feel all alone.

Robin Williams

How Not to Say Offensive Things - Part 1

I recently discovered an article by Psychologist Tamara McClintock Greenberg on Providing Support: How To Talk About Illness  and chuckled as I read her concluding advice "Be present and try not to say offensive things".  Her article immediately inspired a rant on the Top 7 Offensive Things people have said to me about my illness.

1. Come out to dinner, we just want you to feel included

At the top of my list of offensive things to say to someone with major digestive illness is "Come out to dinner we just want you to feel included."  Yeah right. I really feel included sitting there exercising supreme self-control watching you gorge yourselves while I eat a lettuce leaf.

You wouldn’t ask a person in a wheelchair to dance without considering their limitation. Why ask someone with digestive illness to a meal without considering theirs?  Sure, some will appreciate the invitation and only require minor modifications to their meal or venue, but for others the Russian Roulette of food intolerances, the temptation of foods that will end in disaster and the need to constantly explain themselves or inconvenience others may be something they prefer to avoid. The only way to know, is to ask.

There are so many things people can do together, and so many ways to stay in touch. If you want someone with major dietary limitations to feel included why not choose something that doesn’t involve food.  Dining out is not a spectator sport.

2. Go find a Man

An amusing variation on "Come out to Dinner" is “Why don't you start dating / go and get laid ". I kid you not. These comments were unleashed on me by close girlfriends in circumstances where I had repeatedly told them how I was struggling with my health. Initially I accepted their invitations to go-find-a-man with good humour, until I realised they were indifferent to my protests as to why this was out of the question. 

Without TMI, suffice to say that every mucus membrane in my body has been affected by years of digestive illness, not to mention the affect this condition has had on my energy, hormones and mood. To suggest I am well enough to enjoy a bit of rumpy pumpy (possibly after enjoying a robust meal?) is as good as telling me that I'm a total hypochondriac.  Frankly, if that’s support then I can do without it.

It’s understandable that we with invisible illness and vague diagnosis will be doubted. What hurts is not being given the benefit of the doubt by those who say they care. It seems no matter how many times you tell some that you are (unfortunately) no longer the person you used to be, they still expect you to be that person. Most of us are already grieving for what we have lost - we don’t need to be reminded about it. 

3. Silence

One reader wrote:

No one ever said anything offensive to me, but rather had nothing to say and even just disappeared from my life.

I am exceedingly grateful for those who have stood by me. They don’t fuss, but nor do they ignore my illness and the affect it’s had on my life. They accept the new me. They regularly make the effort to pick up the phone or invest a minute in an email or text message to see how I’m going.

“How are you feeling?”
"Haven't heard from you for a while, are you still sick?"
"How's it going? Are you well enough to catch up?"
“No? Hey that’s tough. So what’s the latest?”
 “Hang in there!”

Any contact that acknowledges rather than invalidates my reality is welcome.

Anyone can be a good-time friend. But when the party's over the clean-up begins and the rubbish is put in a bag and thrown out.  That's how relationships work and that's the relationship journey we with chronic illness navigate. 

Advice for friends partners & family?

If you are the person who has not walked away and has chosen to stay in the life of a person with chronic invisible illness, then I commend you for your loyalty.  But I also urge you to take responsibility for your choice. Otherwise you many end up burdened by a martyred sense of duty that is transparent, unsatisfying and unfair.

After all, there is no point hanging around to be indifferent or passive aggressive, pouring salt on a wound and inflicting a slow cruel death on the relationship anyway. No one is served.  If you choose to continue the relationship you must know your limits, boundaries and how much that person is worth to you.  You may be in for a long haul.  Chronic illness is not for wimps. 

If you’re still determined to stay, here’s my advice.  The slogan of people with visible disability is “See the person, not the disability.” When it’s invisible illness it’s important to “See the person, acknowledge the disability.”

DO show concern and consideration, without making a fuss. Acknowledge the reality of your sick loved one’s life, don’t invalidate it. No one is saying you have to be a doormat, but don’t make things worse for your loved one by ignoring the limitations their illness imposes.

DON’T make their illness bigger than it is either. Leave space for them to talk about it, but don’t force it. Don’t embarrass them in front of others by drawing attention to their special needs or expecting their illness to come with a large print user-guide and calendar. Don’t make your loved one feel bad for being sick.  Beware the passive aggressive eye-roll and the pregnant pause.

DO quietly get on with what has to be done to accommodate the unwelcome visitor in both your lives and DO take responsibility for your emotions. There is a limit to what you can do for a sick loved one and this can be very hard to accept. DO seek support outside the relationship if you need it.

Most importantly DON’T kid yourself that you mean well or are just trying to help if what you’re offering is not what the sick person wants or needs.  DON'T put your loved one in a situation where on top of everything else they are dealing with, they must humour your good intentions. To do so is to indulge in an act of gratuitous self-stimulation along the lines of “this feels so good for me it must be good for you too”.

By now you are thinking "Well Tracy, err… you’re rather harsh. Everyone's different - how am I supposed to know what someone else needs to feel supported?” Well err.. just ask, listen and remember rather than assuming, dismissing and forgetting.  It’s quite simple really.

How Not to Say Offensive Things - Part 2

              Friends are those rare people who ask how you are and then wait for the answer.
                                                              Author Unknown

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FMT Declared 'The Ultimate Pro-biotic'

The Gastroenterological Society of Australia has declared fecal microbiota transplantation to be "The Ultimate Probiotic" following the results of a study published in the New England Medical Journal indicating conclusive results for the treatment for C Diff.

The Australian society has changed their previous view in which they had considered fecal transplant to be unsafe and recommended against it. A clinic is to be established at the Royal Adelaide Hospital in South Australia next year.  The article noted that FMT had become mainstream in many centres overseas for treatment of C Diff.  

Thanks to Dorothy for sending in this momentous news. I feel like sending it to the arrogant gastro-enterologist I saw in 2010 who screwed up his nose like an eight-year old and squirmed 'but it's pooooo!'

Hopefully it will only be a matter of time before there is sufficient research on the benefits of FMT for other conditions. As you know, the goal of this blog is to become redundant when backyard FMT is a thing of the past. Will the journey be over soon?  Will we soon have safe accessible FMT for all who need it?

No man should escape our universities without knowing how little he knows.
J. Robert Oppenheimer

A Tale of 10 Months

There is no way to sugar coat it. Last year was one long stream of bitter disappointments as I watched all the benefits of my successful 2011 FMT slowly fade. Bit by bit I unpeeled away the many layers of onion skin that shroud chronic digestive illness and as you do when you peel an onion, shed a tear over each one. 

The failed food intolerance injections, the disturbing functional liver detox test, the off-the-scale leaky gut test, the gall bladder inflammation, the low stomach acid and lastly a raging case of SIBO that saw my supplements sticking to my gullet like barnacles on a boat and each meal feeling like three hamsters fornicating in my stomach until they reached my lower gut only to promptly evacuate in a sea of protest. 

Then of course there were the doctors, the specialists, the tests, the vacant looks, the bills. Around the merry-go-round spun until finally the dogs barked and the carnival moved on.

BUT… I know you know how that feels because you have your own tale of woe.

The religions of the world tell us that duality exists to teach us appreciation. There is no light without dark, there is no good without evil, to love is to hate – and so it goes. That is one of the cherished lessons that chronic illness has taught me. The worse things get the more you appreciate what you have. The losses are bitter, but the wins are sublime.  And so it was that I had a major win last week.

But not before something else rotten happened. My donor trashed his gut after a month of anti-inflammatories.  So there I was alone in the house with no donor, 11 ice-cubes of 10 month old FMT sitting in my freezer and hamsters in my stomach that were now breeding a litter. I had resisted using the last of the ancient ice-cubes fearing them to be of dubious quality, but could not bring myself to throw them out in case they were needed for a rainy day.  Well it was raining hamsters now. Indeed they were hammering at my oesophagus as they had invited their relatives to take care of the new litter and needed more room. 

The broth, the diets, the D-lactate free pro-biotics, the latest burnt offerings from my VIP account at iHerb, they had all failed. To FMT or not? That was the question. Maybe it would be a waste of time anyway. Maybe my digestive system was so far gone that even FMT wouldn’t work anymore. Oh yeah. The Queen of All Things Fecal fails at FMT.

I have become increasingly casual about FMT because after three months of doing it in 2011 it all became very business-as-usual. You initially approach it with such fear and trepidation, yet it becomes just like brushing your teeth once you’re used to it. It’s mere intestinal flora in an unsavoury package god-damn-it. Get over it.

So yes I tried the 10 month old FMT, preserved with a few drops of glycerol just as the CDD had recommended. Within 48 hours the torrent pouring from my battered bowel subsided and half the hamsters had packed up and gone.

I heaved a great sigh of relief and contemplated my victory with euphoric elation.  I wondered who could possibly appreciate a bizarre win like this and decided that would be YOU.

Not only does FMT work, not only does frozen FMT work, but 10 month old frozen FMT works well when you only use one 1 ice-block a day and have some pretty hard-core digestive issues going on.  Amazing huh?

The year ahead suddenly looks brighter. Thanks again wonderful donor. Go the Poop.

When adversity whispers "Give up" 

Hope says "Try just one more time." 

Unknown

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Rehab for the Gut

They tried to make me go to rehab, I said, "No, no, no"

Amy Winehouse

Rehab for the digestive system?  If you’ve been sick for many years like most people who find this site, then it’s time to take your system to Rehab and stop crying ‘No, No No!’ 

However before taking on the effort and expense of FMT it’s prudent to address as many of your perpetuating factors as possible. 

You wouldn’t put your newborn baby in the garage exposed to noise, cold and toxic chemicals. Don’t do this to your new flora. Prepare a welcoming, nurturing home for it.  Don’t expect it to thrive if you haven’t got the basics covered.  Be prepared.  The last thing you want to inflict on your new flora is the ravages of trial and error while its trying to settle. 

The exception is if you have C. Diff which is known to respond well to FMT in 93% of cases. Likewise, if you have access to safe, cost-free, convenient FMT then you might as well start straight away and see what happens. You can always deal with the perpetuating factors later. However if you are considering spending money on a clinic or approaching and testing prospective donors, it is worth addressing as many perpetuating factors as possible before taking the plunge

We all want FMT to be a Silver Bullet but the reality is that many cyber-sufferers who discover this blog are the unlucky portion of the population who are predisposed to bacterial imbalance in the gut known as ‘intestinal dysbiosis’.  All it takes is a trigger such as anti-biotics, anti-inflammatories or food poisoning to push us over the edge. Before you know it you’re on a google-a-thon looking for a fecal transplant.  

FMT is a significant tool in your Rehab toolbox – and it’s likely to do a better job of replenishing your intestinal flora than probiotics, prebiotics or fermented food. But to get the best out of it you need to accept that it's NOT always a Silver Bullet and there may be other factors that are perpetuating your dysbiosis.   Digestion is a complex process and a holistic approach to recovery will be necessary for most.  

Unmasking Your Perpetuating Factors

So what’s does Rehab for the digestive system involve? Lots of people take our money suggesting that there is a linear roadmap to recovery.  In fact the journey is different for everyone.  I've spent the last year unravelling one clue only to be thrown another.  It’s been like watching a bad detective show on TV only it doesn’t end after an hour or a season – and you can’t turn it off.

The longer you’ve been sick, the longer the list of perpetuating factors you will accumulate.  Dysbiosis is only one of these. Below is a checklist of Perpetuating Factors to consider as part of your decision to undergo FMT. Some are straightforward and can be addressed before FMT, the rest will depend on your symptoms, financial position, access to FMT and the urgency of your condition. The more of these factors you investigate before FMT, the higher your chance of success.  Familiarise yourself with each so you know what to look for. 

This list will give you areas to research or discuss with your health practitioner. It is in no particular order of priority. 

1. Diet (GAPS, SCD, Paleo, BED PHD Elemental Diet or whatever works) 
2. Nutrition
3. Dysbiosis (FMT, pro-biotics, fermented foods) 
4. SIBO
5. Leaky gut
6. Low/high stomach acid & digestive enzymes
7. Allergies / Intolerances
8. Liver overload
9. Methylation / Histamine / Pyroluria
10. Systemic inflammation / Autoimmune disease
11. Low thyroid  / Adrenals
12. Stress   (don't underestimate it)

After an initially fantastic result with FMT I've gone backwards because I made the mistake of thinking there was only one thing wrong with me. So I've spent the last year working my way through this list, assisted where possible by functional pathology testing through a doctor and a naturopath who have a clue how to interpret the results (many don't).  The rest of the detective work I’ve done myself. It’s amazing what you can learn by reading the research and talking to others on a similar journey.

There's a lot to say on each perpetuating factor but that's beyond the scope of this post. Check out the links above for plain-english, brain-fog resistant information sources. There are other useful links on the right side of this page. 

A word on health practitioners

In my experience most practitioners don't have a plan and prefer to fight fires as they occur. How well has that worked for you so far?  If your practitioner is unfamiliar with the perpetuating factors listed above, doesn’t know how to treat them or is unwilling to partner you in a Rehab plan, then it might be time to find another.  

Nothing on my list of Perpetuating Factors is rocket science and let's face it, you need a practitioner who knows more than you can read on the Internet. If you can’t find one locally then why not locate a Digestive Illness Coach who will consult by Skype or email and has been through this journey themselves?  You are too sick to pay to sit in someone’s office humouring their ego as they tell you what you already know, or prescribe yet another round of broad spectrum anti-biotics that will make you feel better for a week, worse forever and contribute to the rise of super-bugs and degradation of the human microbe biome.

Take a good look at the service you’ve received from your practitioner and if you’re not happy, find a new one. You wouldn’t put up with indifference from a mechanic or politician, don’t put up with it from a health practitioner. 

DIY ePatients

Some of us have ended up DIY ePatients by default, rather than choice.  This could be due to financial constraints or simply because no one cares as much about your health as you do. Nowadays I have my own Rehab plan and seek the advice of a doctor and natural practitioner as required. You're the one that has to live in your body and suffer this illness, so you need to take charge and drive your recovery plan.

That said, it's always prudent to consult as widely as possible.  Arrogance could be your downfall. It’s particularly important to ensure you have exhausted the usual gamut of mainstream medical testing: colonoscopy / endoscopy / ultrasound / bloodwork / fecal pathology. You don’t want to overlook the obvious. 

Preparing your Rehab plan

Preparing a plan is essential to give you a sense of control in circumstances where most likely you feel your health is in free-fall. It will take discipline and focus, but what other choice do you have? 

To prepare your Rehab plan, research those perpetuating factors on the above list that you feel might be a factor. Then prepare a Rehab plan that addresses each one in order of priority depending on your situation.

Your plan does NOT have to be a neatly presented grammatically correct PHD thesis (have you noticed how many people with gut problems are perfectionists?) Only you are going to read your plan so just prepare a one page list, with a priority number next to each factor and bullet points under each to trigger an action. Finally, decide where FMT fits in your plan. For some it will be at the top of the list, for others it will be lower down. 

Many of you will be familiar with the SMART goal acronym. To be meaningful a goal must be Specific, Measurable, Achievable, Realistic and Timebound.  ‘Get better soon’ does not qualify as a goal. The smallest journey starts with one step and setting small goals breaks your journey  into little steps to ensure that you move forward, rather than ending up in wishful thinking or collapsing from information overload. 'Get better soon' is the destination but you won't arrive there without all the steps in between.

As with all plans yours must be sufficiently flexible to accommodate new developments and circumstances. If you’re not happy with your plan, change it. 

What if you're too busy to prepare a Rehab plan? Then stop reading, turn off your computer and go for a walk. Enjoy your health while it lasts. Keep crying No, No, No!  Your Rehab plan will wait until you are sick enough to make the time.

Once you are committed to your plan, live it. Keep it on your phone or wherever you keep all your valued data.  Record daily your diet, treatment, symptoms and results. Review, interrogate and tweak your plan every morning before you get out of bed. Whatever you do, don’t give up. You future depends on it.

A chain is only as strong as its weakest link…

Proverb

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