Welcome to the podcast George.
GEORGE: Thanks so much Rebecca. I appreciate it so much. How are you?
REBECCA: I am great and it’s great to have you on the podcast today because we met actually when I was over in Portland Oregon for the SIBO symposium. And that’s where I heard about the world that you were doing with SIBO action network. So it’s great to have you join us on the healthy gut podcast all these months later. So thanks for coming on.
[1:20] GEORGE: Well thank you. And Portland is actually my hometown so it was great to see that we had the SIBO conference just in my backyard. And that was one of the first few years of the symposium over there and so it was great to see sort of a fledging movement kind of gain some traction and meet all these different people who are trying to make a difference in the industry such as yourself. So it’s a pleasure to be on your show.
[1:47] REBECCA: My pleasure to have you and one of the reasons why I invited you to join us on the healthy gut podcast was because I was really interested in your own personal story with SIBO and I would love for you to talk a little bit about that and so that my listeners can hear about your own journey. So you have been diagnosed with SIBO and I would love to talk more around – what was life prior to your diagnosis? How did you feel? What were your symptoms like? And that journey for you towards for only discovering that you actually had a condition called SIBO?
[2:25] GEORGE: Sure I would love to. So basically I started noticing some changes in my health in 2010 after taking antibiotics for about 2 years if you can believe it. And I was taking those because I had a pretty bad acne condition and so finally I was taking several different antibiotics. Nothing was working. Finally took Accutane and it solved the problem but it also took a big chunk out of my microbiome I imagined. I didn’t have the diversity that I once did. So then I began college at the University of Puget Sound and of course as we all know, as a freshman in college you are dealing with a lot of stress. You are not eating as well as you might be. You have a lack of sleep. You are going out with your friends and so it’s this big change. And that’s when I first started noticing some changes with my health as well.
And of course it’s very frustrating because I was trying to get going with my college expense. So that’s when I started noticing things like fatigue, food sensitivities, brain fog, and some other strange things like I started having issues with my vision and my hearing too. And it just very perplexing and it was really hard to manage my life in college along with these sort of mystery symptoms at the same time.
[3:51] REBECCA: And were you going to doctors and saying to them, “I don’t know what is wrong. I feel sick. Here are my symptoms.” Or were you trying to muddle through it on your own?
[4:01] GEORGE: you know a little bit of both Rebecca. I went to see the school nurse and the school nurse was pretty stomped. I went to see a doctor locally and they were pretty stomped and I went to see a naturopath in the Tacoma area and they thought that it was adrenal fatigue. And so I started getting treated for adrenal fatigue and that was kind of making things a little bit better but not quite good enough. So it was good enough to continue with my studies and kind of fly forward but it wasn’t solving my problem and so things just kind of continued to get solely worst overtime.
And so you know then I went later on in college, I studied abroad and then I came back and then when I was a senior, it was really tough. My symptoms were sort of the worst that they could be. And I think that we will go on to this in a little bit more detail. But that was one I was noticing in someone that pretty deep health symptoms that can be associated with SIBO including anxiety and depression. My experience in college trying to do my homework, trying to stay…. Spend time with my friends, trying to keep things on the air. It was really difficult and it felt like I was really alone and it made me kind of sad.
[5:25] REBECCA: Yeah and it’s such a common feeling for those of us that have had SIBO that I think quite often especially in the early days we feel very isolated because generally there’s not other people that we know that are going through these symptoms and often when doctors don’t know what is going on with us and so we are not getting a diagnosis we feel that perhaps it’s all in our head or a little bit mad or what is wrong with me, why me, why am I experiencing all of these feelings when everybody else seems to be healthy and happy.
[6:00] GEORGE: you know not all doctors are out there to tell you that you are crazy. And to their credit you know they want to help their patients but when they get into a situation when they are encountering something that didn’t have much or any experience with, you know they are kind of… they don’t have the tools to help you. And so they kind of maybe think of something else or tell you maybe it’s in your head or just kind of sleep more or whatever, they want to help you because if they can’t then they feel a little bit lost. And so sometimes it can be rude if they you, hey you are crazy.
When I was just…a year ago because I was diagnosed in September this time last year actually and I think we will talk about that a little bit more detail but that diagnosis took several doctors and 2 gastroenterologist to get to that point. And the first gastroenterologist that I saw, you know he basically said, “there’s nothing I can do for you. SIBO is not a real thing.” And so that is kind of the situation where we are at and that’s what needs to be changed.
[7:12] REBECCA: Wow! Interesting and did he explain why he believed that SIBO wasn’t a real thing?
GEORGE: He did. He said that he had other patients that had common… had told him that that was what they had encountered. And so he was open at trying antibiotics. And he noticed that their patients were relapsing so quickly that he thought, “Ok it can’t be this if the drug that we are giving them isn’t solving any issue and we don’t understand the mechanism of SIBO and people are coming in with all different kinds of explanations or whatever crazy thing they are reading online. Maybe this is just all hocus pocus.
So I think that was the perspective that he was coming in from. And that is why we need a little bit more objective data and a little more understanding and knowledge from the medical community so that we don’t have that kind of situation.
[8:02] REBECCA: Definitely and we are going to talk more about how we can do that later on in our discussion today. So how did you end up finding a doctor that knew what SIBO was and was able to diagnose you with it? What was that journey like for you?
[8:21] GEORGE: I think the word is definitely journey because it took years to find the right person. And it was total serendipity when it finally happened. But basically like we discussed, I have been asking practitioners all the way back in college. The nurses, local doctors, naturopaths. It wasn’t getting anywhere. But I was kind of getting a little bit better. So I said, “Ok, can I keep going…” but over time it was getting worst and worst and harder and harder to manage. And so finally I little more than year ago I said, “Enough is enough. I need to go find somebody who can really nail down what is going on for me so I can move on with my life.” And so what I decided to do was to bark at every single tree within Kaiser Permanente and Kaiser Permanente is basically, for listeners who may not know, is one of the largest providers of health insurance in the United States. It’s very mainstream. And so you know I went to see my general practitioner and he said, “That sounds terrible. I am sorry that you are doing that. I don’t know if there is anything I can do for you. We ran all these blood tests and you look normal.”
I said, “Well doc, I don’t feel normal.” And so I told him you know, “please refer me to a gastroenterologist.” So he agreed and he put me in a kind of a speeded up track to see a gastroenterologist and still took a month but fine. Specialists take some time. And the first gastroenterologist that I saw just kind of quickly blew me off. And the reason for that was he thought SIBO was kind of a hocus pocus kind of made up condition because he had other people come in who said they had read about it online and you know, “Please give me the antibiotics.” He gave them the antibiotics and they didn’t get better.
And so in his mind SIBO was bunk. And so that didn’t get me anywhere. And so then I waited in line to see another gastroenterologist. But in the interim I was thinking to myself, you know mainstream medicine isn’t helping me right now you know. Their goals is to make sure that people can heal and be productive. But that’s not what’s happening with my experience. And so it really put a bad taste in my mouth. It really made me feel kind of cynical about health care in the United States. So anyway that was when I realized, “Ok I am going to go find an alternative health practitioner and get this sorted.” And so I was just walking by you know a practice one day and walked in and I hit it off with the naturopath there and she sat me down and our first appointment was an hour and a half of, “tell me everything that is going on.” And that was a huge contrast from my general practitioner where it was, “15 minutes of your lab test looks fine.”
So finally after really getting to know my situation and my symptoms she said, “This sounds like SIBO. I really hope it’s not SIBO but let’s test for it.” and a couple of weeks later the results came back and lo and behold it was methane dominant SIBO which for those listeners who have methane dominant SIBO, the symptoms can be pretty severe and they were very severe for me and they were very pronounces. And so that’s a journey. It took about 5, 6 years from beginning of things like food sensitivities to development of my health getting worst over time because nobody was able to catch it early on to finally – “Sounds like you have SIBO. Let’s run a test.”
[12:26] REBECCA: And I think unfortunately that is such a common story and it mirrors mine completely where I also saw multiple doctors in different countries because I lived both in Australia and the UK. And I also had blood tests run and they always came back as absolutely perfect. They would often say, “We wouldn’t see someone more healthy with blood tests like yours.” Yet I also felt and would say, “Why am I so sick?” and I wouldn’t have an answer for me. And also like you, almost out of desperation, I went to a naturopath because I didn’t feel that what I considered traditional medicine was really looking after me. And it was my naturopath who, just like you, said, “I think this might be SIBO.” And she ran the breath test, lactulose breath test and that came back positive. I came back as hydrogen dominant but I did still also have methane present. But the hydrogen was stronger. So that is possibly why I was able to treat my SIBO a little quicker and a little bit more with ease than other people. I would love to talk about what your treatment looks like. What was your mental state like when you finally had a diagnosis that gave a name to why you had felt so sick for so long and also how you then treated your SIBO?
[13:51] GEORGE: Well, I was kind of thrilled to finally have nailed something down for the first time in years. That was a big weight off my shoulder but at the same time it was a big burden knowing that, “Wow this is going to take some real effort. And you know we were discussing at another point that when we first diagnosed we thought that we were just going to hammer through it. We were going to take all the right drugs. We were going to do whatever it took to just get rid of the SIBO and move on with our lives and for a lot of people it doesn’t turn up that way.
So just as a quick aside I was just discussing this very issue with Dr. Allison Siebecker and she was telling me that, “you know from a recent study, we know that SIBO is crying for 2/3 of patients and the 1/3 of patients, the lucky 1/3 what sounds like you might be one of that. if you fall in to that Rebecca which is wonderful. For 2/3 it’s going to be chronic and so it’s not a question of getting rid of it. It’s a question of getting under control so you continue to go about your life.” But when you first hear that you have something that could be chronic you say, “Doctor that is crazy. Forget it. I mean I’d go somewhere else.”
And so it took me a long time to accept that it was going to be chronic in my case. So what I ended up doing for treatments and my plan was to do a treatment, get it done within two weeks and move back to the life that i was leading. I was working in Spain at that time and just moved on. And it didn’t work out that way. So I started an herbal protocol and it wasn’t responding at all. And so I realized that I had to stay in the States. So I had to move back home to the States and leave my life behind in Europe in essence to get this treated. And it took me you know about 5, 6 monthsbefore I started feeling like myself again. And I couldn’t work during that period. I was so sick. So what I did in a nutshell was tried that herbal protocol which wasn’t very successful for me. I did 2 rounds of Alimed, one round of the elemental diet which is pretty extreme but I was committed and I have also done 3 rounds of RIfaxamin and metronidazole and of course a very low FODMAP diet.
So those are all the different treatments that I have tried.
[16:37] REBECCA: and what’s life like now, do you still have SIBO and how do you manage your condition?
GEORGE: So the first time that I did Rifaxamin with Metronidazole, it was like, “Woah, my life is back, I feel normal. I could eat things again. I can do everything.” and I was so excited about it that I was reintroducing foods way too fast. Pizza, ice cream. All the things that we love that I had been missing so much. And that’s why I relapsed within two weeks after the first round. And so the second round didn’t quite eliminate enough of the overgrowth. And same thing, second round, I was really excited after the treatment and I was cheating again and I relapsed again in two weeks. And so the third round I was like I can’t keep taking these antibiotics every month, two months for the rest of my life. And so I finished the last round in June and I have been very very strict with the low FODMAP diet. I used Dr. Allison Siebecker’s SIBO specific food guideline and basically it’s just a bunch of recommendations for different foods that work in different stages or different levels of tolerability.
And so I started with very well tolerated foods and I have been able to reintroduce some of the higher FODMAP foods, fermentable foods back into my diet because of course part of the challenge is making sure that we get enough nutrition on SIBO patients. But it’s still very very limited and I haven’t really cheated at all. No ice cream, no pizza, nothing fun. And certainly no alcohol or anything like that. So super low sugar. And that’s just the nutritional component. And I think we will talk a little bit more about that. But of course, there are other lifestyle components that have been really really important to my treatments as well including sleep and exercise and water and things like that.
[19:00] REBECCA: I think it’s a really interesting point you make George around the experience that we often have when it comes to what we perceive as returning to our old life. And I think once you have been doing this kind of recovery from a condition like SIBO for a while, you realize that perhaps the old life isn’t going to be the new life. And one of the things that I think was positive about my experience with my treatment was that I followed Dr. Nirala Jacobi’s SIBO biphasic diet protocol. And she is Australia’s leading SIBO specialist and she has a very phased approach. So she looked at the low FODMAP and what Dr. Allison Siebecker had done. And has combined it into a pretty strict protocol were you start on a very low fermentable low sugar low carbohydrate food list and then you slowly but surely expand upon that and that’s very measured, very controlled. And you are doing that in conjunction with your treatment. And so I followed that for 6 months and because everything was so staged and so slowly reintroduced, I think that that gave me a really good chance at then reintroducing some foods that I had a long term problem with like gluten and dairy.
And I can bow eat those foods in moderation, in small amounts on occasion without major issues which is really nice because it does mean that on occasion I can have those foods. However what I have found is that even though I don’t have SIBO at this point in time and I am at risk of redeveloping SIBO because I have endometriosis which causes adhesions and I’ve also had several abdominal surgeries which have caused adhesions. And I suspect I have adhesions kind of wrapping all around my intestinal system and I have a whole host of other conditions as well. To me it’s about managing SIBO from returning rather than whilst I currently have a negative SIBO status, I don’t see that I am SIBO free for life. I see it that i manage my condition really strictly.
So I have also a bit like you have been very careful with my foods, my alcohol consumption, my stress, my sleep, because I don’t want this condition to come back full force like it has in the past. So life post SIBO is different to life pre-SIBO but it is a different life. So I think that kind of gives us a nice segue into talking about what like is like post SIBO treatment and how one manages their life with SIBO and also how they manage it once they have a negative SIBO breath test.
And one of the things that I realized was that as I went through my own personal journey, I realized I had to address 5 key pillars to health and until I address all 5 of them, I wouldn’t be able to achieve lasting health and wellness. And so the first pillar for me was around awareness and I would love to talk to you George around your own journey with becoming aware of your condition and also what awareness looks like for you post knowledge that you have something like SIBO.
[22:29] GEORGE: Absolutely. And first of all I just want to say that I think it’s great that the biphasic diet works for you. And I think that if people can find a practitioner that could really dial into what’s going on with their SIBO and what kind of associated conditions or underlying conditions might be related to their SIBO, then they can find something, a diet plan, a treatment plan, including the biphasic diet. That could really make a big difference and so I think that that’s what your doctor was able to do and that’s the best case scenario. And that’s what we want to get going for as many other people as possible because you and I both know how debilitating it can be to live with SIBO especially when you have other responsibilities in life to your family, to your work what have you.
And you know when you have this weight on your shoulder you are going through your life, it’s untenable. You can’t do it. But post SIBO or at least post getting things to a stable level, I think you are exactly right when you say that awareness is really really important. And the way that I kind of think about that is that I think that I have a disability but that doesn’t meant that I am disabled. And so what I mean by that is that I have SIBO and I know it’s there but I can do everything else that is important to me in my life. So I can focus on my work, I can focus on my passions, my hobbies, spending time with my friends. But I have to adapt those a little bit right?
So I am not going to go to the bar all the time with my friends for example or certain things that would have been triggering. Or I need to make sure that if I am getting on to a restaurant… its somewhere that I can eat. So I just need to… it involves a little bit more planning but that is because I am aware that I do have a disability. But when I plan I am not disabled.
[24:34] REBECCA: I think that is great. I like that. We got a disability but we are not disabled and that is so important. We will talk more about mindset as well because that is another key pillar to health. But just that being prepared, being aware, you then have a much greater chance of being able to manage a condition like SIBO.
Nutrition was the second key pillar to my recovery because I truly believe what we eat is what we become and when we have disordered digestion with a condition like SIBO, nutrition is so important because it can help and it can also hinder our recovery.
You have talked a little bit about your nutrition in terms of needing to avoid certain foods but what does nutrition look like for you these days George?
[25:27] GEORGE: Sure. So my nutrition is very targeted to my daily… to my needs in essence. So the things that I can tolerate are almost any kind of protein and then certain vegetables in small quantities, some berries in small quantities. And then one thing that I have struggled with for a long time was carbohydrate and I think that is one thing that a lot of us struggle with because that is exactly what feeds the overgrowth and sugar and other things. But carbohydrates, that’s like throwing nitrous oxide on to a fire. And so it wasn’t until I started talking with a nutritionist and a friend of mine who is a nutritionist to understand that you can’t live your life without carbohydrates. At least most people cannot. A lot of people really need to have a base level of carbohydrates in their diet in order to be able to function. And so for me the carbohydrate that has been an absolute life saver has been jasmine white rice. So that’s what I have with lunch and dinner every day. And then for breakfast, I can also tolerate a small amount of oatmeal.
So without those carbs and I went through several months without any carbohydrates because I just didn’t want the symptoms, that I could tell that was kind of grinding me down because I wasn’t having the right nutrients and having enough energy throughout the day to function. And so that started to cause some other issues like blood sugar management issues and histamine issues and since being more carbohydrates, those aren’t as challenging for me. But I think it’s really really important for people with SIBO to make sure that they are getting enough of the right kind of nutrients that their body needs.
Not everybody needs a minimum of carbohydrates but I do. And one way you can do that is by working with a nutritionist.
[2:33] REBECCA: I think that is a really great point that you make George around finding the nutrition that you require for yourself. And I know that i hear from a lot of people saying, “I just wish there was a one size fits all diet that I could follow. Why can’t all the specialist agree on one diet for all of us?” We are not the same. You and I George, are not the same. We both have a condition that is similar but I was hydrogen dominant. You were methane dominant. But our genetic makeup and our own individual microbiome, the bacteria that live in our guts and everything else. Our lifestyle influences, everything is unique to us. And so I always say to people, “unfortunately we have to become our own private investigator and we need to find the foods that work for us.”
And in contrast to you George, I actually do really well on a low carbohydrate diet. I find that my system just doesn’t do well with carbs. I get really noticeable spikes in my blood sugar. Whilst I don’t have SIBO at the moment, so I don’t get the SIBO symptoms, I get other symptoms when I have lots of carbohydrates. I feel fantastic when I am eating good quality protein, good quality fats and vegetables and some fruit. That’s when I feel my most incredible. So what works for me doesn’t work for you and won’t work for anybody else. So I think the message really is find the foods that work for you and then play with them like work out…Ok well I can have Jasmine rice. Can I have sweet potato or could I have basmati rice? Or you know what are the other carbs that I can eat, that I can tolerate or what are the other proteins that I can eat or vegetables that I can eat so that we can ideally expand our nutrition so that we are having a broad range of foods that are nutritious for us, healthy and also feeding our gut microbiome so that they are getting the foods that they need to survive and thrive.
[29:42] GEORGE: couldn’t agree more Rebecca. I think you really said it perfectly.
REBECCA: the third component in my journey to health was movement. And I realized that being a chronically unwell woman for most of my life, I wasn’t brilliant at moving every day. I would go through fits and burst were I would sometimes…I am all or nothing so I went into triathlons for a period of time before I got my SIBO diagnosis. I would be training 5 to 7 days a week. Really high intensity training or I would be doing nothing. I would be lying on the couch going, “I feel sick.” And so I realized that movement had to be part of my daily life. So I would love to talk to you George around, “What you do when it comes to movement and how movement makes you feel and whether you feel that is an important part of your own journey to health.
[30:40] GEORGE: I think it’s crucial. I think it’s absolutely crucial for people who have SIBO and certainly for general health and wellness for anybody. But especially for people who have digestive issues like SIBO because you need to make sure that your motility, your migratory motor complex that is pushing through food through your small intestine so it doesn’t stay there is working properly and that is going to make sure that you SIBO is not going to get worst over time. But you do need to be a little bit careful in how you are doing that. And that kind of speaks again to that sort of personalized approach with nutrition is you need to find the right kind of exercise and movement that works for you.
So like you I used to be really into high intensity work outs. And then it just wasn’t… it was kind of leaving me totally drained, putting a lot of strain on my adrenal glands and I also what I learned is form my naturopath is that high intensity exercise can be something that is negative for people who have SIBO because it can upset your digestion and couldn’t go into more details about the mechanisms in that. But when I changed from a higher intensity workout and movement routine to something that was lower to mid intensity like jogging, bicycling, walking, things like that, it really made a big difference.
First of all it took a big load off my adrenals and that was an associated condition for me was adrenal fatigue. But then it definitely when you finish your workout and you can tell the next day you have a normal stool what have you, you can really feel the difference and see the difference when you are moving and exercising regularly. So for me, that is like 3 or 4 times a week of modern exercise usually.
[32:42] REBECCA: Definitely. And I am the same. I no longer do those really high intensity full on workouts. I walk. That is my exercise now and I went and got myself a fit bit and I aim to hit 10,000 steps every day and it has been lovely actually. I really enjoy now just getting out and sometimes I just casually stroll. I’m not even walking quickly. I am just breathing in fresh air, looking at the sun shining. Hopefully the sun I shining here in Melbourne, Australia but I am looking at birds flying. It’s spring time here in Australia at the moment. I am looking at the blossoms and smelling the flowers and it’s really wonderful, relaxing time to get back and outside and be one with nature and I find that it really helps soothe my system and I feel so good for it.
[33:38] GEORGE: that sounds great. I think we all have to go on a SIBO family walk at the next conference in Australia.
REBECCA: definitely. The 4th component for me was and this was such big one for me was mindset. So it’s my fourth pillar in my pillar to health and George I would love to talk to you around the aspect of mindset for you in your own journey to recovery and what you experienced and what it looks like for you today.
[34:09] GEORGE: Right so mindset was a really really big piece of my SIBO experience. And it kind of felt like me versus me because I was really dealing with pretty debilitating mental health symptoms like anxiety and depression and it didn’t help but I felt like I had this ailment that nobody knew about, that nobody have. and I was all alone with and one thing with that was really really big for me was discovering that there is a community of people like us online and you can engage with them and attract with them and know that you are not alone and so the first thing that dealt into was SINO discussion group on Facebook which has over 10,000 people on it now. And you find other people that are dealing with exactly what you are dealing with. And that’s like woah, I am not alone anymore.
Now certainly you are not going to see them quickly and actually in Portland I was able to go to a meet up group with other people who were dealing with SIBO. That was really special to meet other people in person because we really feel like we are a dime and dozen. Even though in reality we are looking at numbers were up to 85% of people who have IBS which is tens of millions of people. That is a separate issue. So it was community was a big component to my mindset that I am not alone and then the other aspect of that was exercise nutrition which were helping my mental health as well and then also saying, “ok this is really a big deal. I need to go get some help.” And so I went to see a mental health practitioner. And i actually took antibiotic and antidepressant for a little while and those two things in addition made a big difference for the mental health symptoms that I was working through. And so basically getting the right resources that I needed and dialing in with a community of other people, those really help my mindset today and they help me continue with my day. Knowing that I can be an example to say, “Hey I still have SIBO but I am going forward with my life.” You have SIBO, you can do the same thing.
[36:28] REBECCA: definitely and I think that’s a really important message that for a chronic illness that, it doesn’t control us. We can take back ownership of our lives and sometimes we need to do some work on ourselves in order to help ourselves move forward.
And thinking about our mindset, some of the things that I do with some of my coaching clients is that particularly on tough days we have those days some days were everything feels bad or crap and we jus think, “What is the purpose? What is the point of living?” and so I do something with my clients were I get them to focus on something that makes them happy. Now it could be that they have seen a flower blossom or their dog came up and you know gave them a lick or wag its tale at them or…I don’t know they saw something beautiful bird fly by.
Something that can help them take themselves away from focusing inwards and it can help them focus outwards. And I get my clients to make a note of something that has made them feel positive every day and it can be something really smaller. It can be something really big. They have a really big win for instance or they ate a meal and they didn’t have negative symptoms. And I find that when we focus on these small things every day and we start to write them down, we drop them down every day and we can look back over the week at the things that made us happy, that can help shift our mindset from being constantly negative which is so common and understandable when you are chronically ill to starting to shift the tide so that you can start to see things more positively. And when we start to look at things more positively, we’ve got much I believe and much better chance of truly regaining our health because we are looking towards positive rather than staying backwards with negative.
[38:34] GEORGE: that’s wonderful and I think that is something that even I can apply to myself because I don’t have all the answers. You know. I’m doing the best that I can. Taking some of the advice from my therapist. Thinking about mindfulness. But I still have days were you know I feel really frustrated or I am beating myself up. Or you know I am kind of getting stuck into maybe some cycle of negativity because maybe I can’t do something that I wanted to but I am having a flare up right? And that’s kind of causing my brain fog and I can’t think this clearly and so basically what I tried to do is just keep busy with things that I do care about and that are important. But I don’t have all the answers. So I think that for a lot of people having some resources like you or other therapists would be really beneficial because it is really tough at times.
[39:29] REBECCA: it is. It is definitely. And I’ll move in to the 5th component which is lifestyle. But mindset and lifestyle I believe go hand and hand. And I know for myself when I was going through my treatment, I would often feel quite angry that I couldn’t do what other people could do and I would look around my friendship circles and my families and they would be what I considered living a normal life. And then there was me so restricted. So restricted with the food, I couldn’t just go to a restaurant and eat there. I had to always be so organized and planned . I couldn’t just grab lunch on the go. I always have food prepared with me and I felt pretty cross and angry about it and so that was really negative for my mindset.
And something that I had to work on was I had to shift my thinking. And so instead of being angry around how I can’t eat pizza with people and I can’t do this, I would then think, “You know what? What I can do I is I can eat really good quality health, nutrition that my body needs right now. And one day in the future I may be able to eat a pizza again.” But is that really the best quality nutrition for me? No it’s not. So you know what my good protein and my good vegetable, they are so healthy and nutritious and celebrate the fact Rebecca. You have access to that food because there are plenty of people in this work that would kill to eat the food that you are eating. So get over yourself kind of message. And I found that that kind of helped me when I was trying to live a life with SIBO and watch other people kind of live these lives that I felt I was missing out on.
Lifestyle is really important and the way we live life both during our treatment with SIBO and post treatment with SIBO is really important. And George I would love to hear how you manage your life and lifestyle these days in comparison to how perhaps you once lived.
[41:32]] GEORGE: Definitely. I think you tested on this a little bit. But you kind of have to think SIBO as an opportunity because you have a chance now to redesign your life in a way that is going to allow you to flourish with a disability but not being disabled if that makes sense. So for me, I am not as close with some other friends that I had in the past. There are some activities that they did I couldn’t jive with right? But I am close with other friends who were really understanding or who were doing other things that I am more invested in more now right?
And then of course I had to do a total pivot with my career. I was working in a star up industry in Spain and that involved traveling to conferences all around Europe which was great. I loved it. But I couldn’t do it. I couldn’t travel. I couldn’t have the food. While I was traveling around I couldn’t deal with that stress. And so that was part of the reason I had to come home. Then I said, “Ok what kind of work can I do now that is going to work with SIBO but also be really fulfilling for me and important?” you know it turns out that I was able to find some work here and had a really understanding employer and able to pour some time into SIBO action network which we will talk about in a second.
So it’s really about finding a new path that actually in the long run is better for you. This life that I am living now matches who I am better than I think the one that I was leading before SIBO. I can’t say that that’s always going to be true for everybody but I think that when you find the things that do work for you that make you happy, that make you healthy that you will be better off and SIBO is really a forced wake up call for a lot of us.
[43:39] REBECCA: I think that when it comes to lifestyle, I kind of look at it. It’s almost like BS and before SIBO and AS after SIBO. My lifestyle was not conducive to health before I got my SIBO diagnosis. So I had a lot of stress. I was working stressful corporate jobs. I did not sleep enough. I drank far too much alcohol. I was with some friends that, “gosh I had a lot of fun with them but their priorities were around drinking and partying.” It wasn’t around health and wellness. And so I had a period of mourning actually were I had to say goodbye or had to redesign friendships when I first got diagnosed with SIBO because literally it was black and white. Overnight I had to change everything because I was like we have talked about earlier in this podcast, I was in that zone of “I am going to do whatever it takes to get through SIBO as quickly as possible.” So I changed my whole life. But now I realized that the way I live now and I don’t drink…I do drink a little bit of alcohol here and there but I definitely don’t drink like I used to and I don’t feel great drinking alcohol. So it’s special occasions rather than every week.
It’s a constant work in progress for me around getting enough sleep, getting to bed before midnight. I focus on my exercise. I focus on my mindfulness. I am very conscious of the people I have in my life. I make sure that the people in my life are supportive of my journey. And people that have similar interests and values in my health and wellness journey now. Because those that don’t have that interest, then that is fine. They don’t have to. But they are not necessarily the right fit for me anymore. And the other thing I think it is important for people to be aware of is we have to often make changes pretty radically in our lives. But we have to be sensitive to the impacts that has on others.
So we get very inward looking. So when I got my diagnosis obviously I had to change immediately. But my partner was, I didn’t appreciate that he had to go through a journey as well. And so my food change had a significant impact on him. And I perhaps wasn’t very sensitive or aware of the enormity of the impact on his life and I think that if I could go back in time I think I would perhaps be a little bit more understanding of the changes that he had to go through even though he didn’t have SIBO.
And then I hear it from people quite often that they don’t know how to manage their families. They might have a mother-in-law who or a mother who is used to cooking food, lots of gluten and dairy and foods that we generally can’t touch at all when we are treating SIBO and we don’t know how to manage these people. And so sometimes we have to go on a journey with them, a journey of education and raising their own awareness. Because whilst we have to make changes immediately, these people often aren’t ready or willing to make changes themselves. So you know whilst we want everybody to support us through our journey, sometimes I think part of the awareness pieces is that we have to be aware that not everyone is able to do that for us in the time frame that we need them to do it. And that we have to be a little bit understanding that sometimes we might have to pull ourselves away from certain people for a period of time while we focus on our own health.
[47:39] GEORGE: right. And you know we can get frustrated trying to explain SIBO because it is hard to do in a short period of time because it’s thoroughly complex and there’s quite a lot of pieces that are involved with it. And so you can tell right away whether or not someone is going to be receptive to what you are explaining. But you are right, with people that are close to you that are important to you, you do have to go on a journey with them. And it is special when they are receptive and you know you are able to adapt your lifestyle and they make suggestions that work for you. But definitely, that first thanksgiving when you come with rice and chicken and everyone looks at you like, “Ha?”
It can be a shock. So you know we have to try to have patience with other people who don’t know about SIBO and not to get frustrated ourselves because we’ve had enough frustration to deal with. So we just need to let things take their course and go on that journey if the need be.
[48:47] REBECCA: and I think the other thing that we have to be mindful of is, and I was definitely guilty of this, is that we kind of drink the SIBO Kool Aid so to speak that we become so passionate about this condition. We want everybody to know about this condition. People say to us, “Oh I am bloating. I am constipated.” And then we are immediately launching into, “Well have you heard about SIBO. There’s this condition you should go and get tested. And we kind of become these like walking posters for SIBO and not everybody is at the point in their own journey when they are ready to hear it. And I kind of check myself sometimes were I would find myself preaching about SIBO. And I think I got a little bit annoying. So I now know if someone wants to know more about SIBO and they want to know more about what I do, then I will share it with them and if someone is going on and on about IBS type symptoms, I say to them, “You might like to look into this. There’s this condition. And here’s some information here. You can go on and find it.” I can let them go of in their own time but I have to learn to stop being a preacher. And I think we can be guilty of that because we feel like we have found the miracle solution for all our ailments.
[50:07] GEORGE: Definitely. I am guilty of that too. I have a family friend who recently has been diagnosed with SIBO and I just want to fling all these knowledge of them and say, “Do this. Don’t do that.” but I have to remind myself that my experience isn’t going to apply to this person and you know like you said, they have to go through this journey at their pace. So you know just give me that basic layer of information and if they have more questions, you are a resource available to them. But when you are kind of unloading your experience and your knowledge to them, it can definitely be overbearing.
[50:41] REBECCA: it can. so George I would like to know, what’s life like today for you? So as I understand that you still have SIBO and how is life today?
[50:52] GEORGE: Basically Rebecca, you know I have flares, I probably have a couple of flares a week. But I know how to work through them now. So you know implementing those different pillars that you mentioned have pretty well brought me to a productive “normal life.” You know I am able to work which is huge. I mean through that period were I was seeing doctors and trying to get well and that was maybe from this year I would say January to May, June, I wasn’t able to work at all. I was like, “Am I ever going to be able to provide for myself again?” to do that and be independent is huge. And then beyond that is like great. You know I can go out with my friends! Fantastic! I can go out and do some of my hobbies and go biking. I can go take pictures. Other things that are important to me, I am not going to be held back. And that is all just like the cherry on top for me at this point.
Whereas before it was like, “Oh it’s a long week and I can go out with my friends. Finally!” I don’t look at t that that way anymore because I was at such a low point that when I have those special moments, it really is like, and “Oh wow I have come a long way.” So for me I am really happy with where I am at and I am going to try really really hard to maintain it.
[52:19] REBECCA: wonderful and I think that is such an important message for people listening that are perhaps suffering from chronic SIBO that life can get better and you still have the condition but you can still be really enjoying life. So that is such great news to hear.
[52:37] GEORGE: Thanks. Same to you. It’s a long journey but you can come out right the other side if you really commit to it and you have the right resources.
[52:47] REBECCA: Definitely. And what I think is really interesting is that SIBO has led both you and I to new careers and to be doing new interesting things that we possibly, we probably would never have done if it had not been for the SIBO diagnosis. Talk to us about SIBO action network.
[53:12] GEORGE: Sure. What preceded SIBO action network when I came home and I was really sick and I was like this. My BS experience if you will, well actually this was after SIBO but you know maybe BS in another way was very very challenging and I said, “You know this sucks! We need change. We need to get out there and promote SIBO and do something to get going so that we can get a cure for this thing.” And so what I did was I created a site called simplySIBO.com and it was basically just a blog about my journey and my experiences to share for other people and I actually called it the SIBO pro and the reason is that there wasn’t anybody else who was a young guy like myself blogging about SIBO. So I really felt alone. There were some people with different backgrounds who had been blogging and really they weren’t that many of them. But I felt like I couldn’t quite relate to them. So I wanted to do that blog so that other young people could say, “Wow! George is going through this and he has got this blog. I am not alone.”
And basically I started that with the vision that someone I was going to make a difference. I wasn’t sure how it was going to happen but didn’t care. Just needed to start with something. And you know I started to get feedback from other people, on Facebook. People would email me and they tell me about their experiences and they are similar. They are different. And it was really really special. And one person that reached out to me Darcy Richardson was a nurse who had been dealing with SIBO for quite some time. We hit it off and we had a similar vision of starting a non-profit that would do advocacy work on behalf of patients with SIBO ultimately to move forward research on behalf of SIBO patients. As well as offering resources for current SIBO patients.
And so we decided to start SIBO action network. And basically what we want to do is we want to advocate on behalf of SIBO patients. We want to encourage research and we want to be a conduit between SIBO community and the medical and research community. And so one way that we have been able to do that is through a survey that I started but I wouldn’t say that it’s mine because it was inspired by somebody who had created a survey on the Facebook group and then I was able to work on it with Darcy and with some really thoughtful advice and help from Dr. Allison Siebecker and later on Dr. Pimentel. And what we were doing with that is what we want to do is we want to quantify the suffering of SIBO patients so that we can have some really clear numbers on what people are dealing with because there’s no material out there right now saying how much does it cost to have SIBO. How many days of work are you missing?
How much are you spending on supplements? Things like that. and so we want to get that data out there so that we can… maybe a pharmaceutical company or a research institute so we can say, “Hey X number people of SIBO are, you know they are in pain.” It’s worth it for us to invest in something that might work for them.
[56:51] REBECCA: wonderful. And I think that that just gives some data around what it’s like to have SIBO. It’s so important. And that also will help those of us with SIBO to feel validated and again not feel so isolated that there are others feeling just like us, living just like us.
[57:13] GEORGE: Exactly and part of that is that how many people right now have SIBO but don’t know they have SIBO. And from a data it sound like millions and millions of people and so that’s what we want to do is we want to say, “Hey are you having IBS-like symptoms but you are not really getting anywhere?” maybe consider looking into SIBO and we want to make sure that we can help those people who are dealing with the symptoms that we are dealing with and aren’t getting anywhere but don’t even know that SIBO is a thing. And part of that is because it’s only in some of the more progressive places in the world right now were SIBO is being researched, is being treated. Places like the Bay area, Portland, Boulder, and some of the cities in Australia. Only a few places and we really want that to spread. I mean if you look at trends on Google were people are researching SIBO, you look at the middle of the country United States, and there is nothing. People aren’t really searching for it and there aren’t any practitioners that are there. And that is really sad because there are definitely people there because SIBO it affects any population. There is no limit to who can be impacted by it because there are so many associated conditions that can lead towards it.
And so part of that is you know we put out a practitioner list so you can find somebody in your local area who might be able to help you treat that. We really want to push the advocacy piece so that we can help as many people as possible.
[58:52] REBECCA: and where can people find you if they are wanting to learn more about SIBO action network or get involved? And can people take you survey now or is that something that is forthcoming?
GEORGE: Sure so they can go to SIBO action network.org/survey and the survey is open. It has been open for about 6 months now and we’ve had about 300 respondents which has been phenomenal. And actually we just recently published the first round of results from that. So you can really really eliminate stuff and you can find that on our blog but if you have SIBO I would really recommend taking the survey because it really helps to contribute to our knowledge and understanding about what we are dealing with and how that affects your life. And what we are working on is refining that survey right now so that we can get that IRB certified and we really have something that’s really objective and something that is going to be able to… you know we can get that in front of practitioners everywhere to get to their patients so that we can publish it formally in medical journals and things like that. So that people will really take the data seriously. That’s what we are headed and that certainly is going to take a number of months and part of the challenge is that we are not a non-profit yet. We are working on a non-profit status. So we cant offer text adaptable right ups for donations which would help speed up the process for developing that more refined survey. But we are getting there we are looking through other avenues to get that funding because it is not cheap to develop a really really official professional certified survey. But we are going to get that done. In the meantime, we have got a survey now that people can go to and that data is raelly useful right now.
[1:00:55] REBECCA: wonderful! And I think that that survey, both the current and then the future survey that you are doing will really help in terms of just spelling the myths that people like your initial gastroenterologist have which is that SIBO isn’t a real condition. And my GP here is Australia also doesn’t really believe in it. So I think that that work you are doing is so necessary and it’s going to be so beneficial to both the SIBO community of people that are currently experiencing SIBO but also practitioners who will one day be treating it. So George thank you so much for that work that you are doing.
[1:01:38] GEORGE: Sure. Don’t just thank me you know. It’s definitely an effort on Darcy’s part and the community that has been so receptive. So it’s going to be a team effort for sure.
REBECCA: Wonderful. So I have the links to SIBO action network survey in the show notes. So do head to the website where you can download that. George it has been an absolutely pleasure to have you on the show. Thank you so much for sharing your SIBO journey with the healthy gut podcast listeners. It has been really insightful and I do feel that people that are listening to this podcast that are currently experiencing SIBO will have learned a lot about what life can be like even if you still experience the condition. So thank you so much for your time.
GEORGE: Sure it was an absolute pleasure and I really wish your listeners the best.
REBECCA: Thank you.