S2 E2 Mickey interviews Susan McCauley, who is recovering from ulcerative proctitis

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Welcome to The Autoimmune Wellness Podcast Season 2! We’ve created this podcast as a free resource to accompany our book, The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness.

Season 2 Episode 2 is the first of our interview episodes this season! This week, Mickey sits down with her friend Susan McCauley to discuss Susan’s experience managing an unidentified autoimmune condition for many years. Susan was eventually diagnosed with ulcerative proctitis, but her healing approach has been all about addressing the root causes from the beginning.

Susan and Mickey dig into what it was like for Susan to finally receive a diagnosis, they myriad treatments and tests she underwent, low-dose naltrexone, stress management, and the importance of a support system. Scroll down for the full episode transcript.

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Mickey Trescott: Welcome to the Autoimmune Wellness podcast, a complimentary resource for those on the road to recovery. I’m Mickey Trescott, a nutritional therapy practitioner living well with autoimmune disease in Oregon. I’ve got both Hashimoto’s and Celiac disease.

Angie Alt: And I’m Angie Alt, a certified health coach and nutritional therapy consultant, also living well with autoimmune disease in Maryland. I have endometriosis, lichen sclerosis, and Celiac disease. After recovering our health by combining the best of conventional medicine with effective and natural dietary and lifestyle interventions, Mickey and I started blogging at www.Autimmune-Paleo.com, where our collective mission is seeking wellness and building community.

Mickey Trescott: This podcast is sponsored by The Autoimmune Wellness Handbook; our co-authored guide to living well with chronic illness. We saw the need for a comprehensive resource that goes beyond nutrition to connect savvy patients, just like you, to the resources they need to achieve vibrant health. Through the use of self assessments, checklists, handy guides and templates, you get to experience the joy of discovery; finding out which areas to prioritize on your healing journey. Pick up a copy wherever books are sold.

Angie Alt: A quick disclaimer: The content in this podcast is intended as general information only, and is not to be substituted for medical advice, diagnosis, or treatment. Onto the podcast!

Topics:
1. Introducing our guest, Susan, and her autoimmune wellness story [3:19]
2. Officially a diagnosis [8:14]
3. Varying treatments and testing [18:07]
4. Low-dose naltrexone [24:24]
5. Stress management and sleep [28:31]
6. Having a support system [35:48]
7. Tips for the beginning of your autoimmune journey [40:21]

Mickey Trescott: Hey everyone! Welcome back to the Autoimmune Wellness podcast. We are in season 2 of the podcast. This is Mickey if you guys haven’t figured out the differences between Angie and mine voice yet. Today I am doing a personal interview with my friend Susan; hey Susan.

Susan: Hey Mickey! How’s it going?

Mickey Trescott: Awesome. Susan is one of my AIP and paleo BFFs. We met at PaleoFx; gosh, 3 years ago?

Susan: It was actually AHS.

Mickey Trescott: Oh! AHS, yep. So there we go.

Susan: And it was longer than that.

Mickey Trescott: Four!

Susan: I think it was 4 years ago.

Mickey Trescott: Yeah.

Susan: Yeah, 4 years ago.

Mickey Trescott: I was looking for a ride home from the airport, and Susan had a rental car, and she was also picking up Ben Greenfield, so I got to meet him. So Susan was one of my first paleo friends.

Susan: And Mickey was one of mine. And we had the same shoes on, and it was like; BFFs at first site.

Mickey Trescott: Yep! {laughs}

Susan: {laughs}

Mickey Trescott: Basically. We couldn’t not be friends.

Susan: Yes, exactly. It was meant to be.

Mickey Trescott: So I’m really excited to share a little bit of Susan’s story today because Susan is one of these people who hasn’t had a clear autoimmune diagnosis from the outset, but she has done a really great job at kind of tirelessly working out some of these root causes and kind of still working on some of that; we’ll talk about that. And I think she just has such a great attitude about the healing journey. She’s also a coach, so she has a lot of experience about this stuff. But Susan, thank you so much for being here; joining us from California. You ready to get started?

Susan: Sure; shoot. Go ahead.

Mickey Trescott: Alright. So, I know that this question is a little bit more complicated for you; but tell me a little bit about your autoimmune disease, and what you first noticed when you first realized maybe that’s something you were struggling with.

Susan: Well, I first had symptoms a long time ago. I kind of am the example of what not to do, or how to go about everything backwards. I didn’t come to paleo because I was sick; I came to paleo because I wanted to lose weight, and because I had kind of developed a binge eating disorder from all the yo-yo dieting, so I was trying to change my relationship with food. But my first autoimmune symptoms; I have ulcerative proctitis, which is like the cousin of ulcerative colitis. It’s just less severe, and in the lower part; the distal part of the colon. I had symptoms as early as probably 10 years ago; which I don’t know how much TMI about symptoms is on your podcast {laughs}.

Mickey Trescott: Anything goes. We talk about poop all the time.

Susan: So basically, bleeding; rectal bleeding, bleeding when you have your bowel movements, and it started when I was doing the yo-yo dieting and the Weight Watchers; and paid attention to conventional wisdom on things like fiber. And I remember one time I ate four Fiber One bars; and I don’t know if you’ve ever had one of those, but they have like; I don’t know how much fiber in them, but they’re like a cookie, you know? And I had a binge eating problem. So one is delicious; four even more delicious. And that’s when the gut problems started.

I went to Kaiser, and they did a sigmoidoscopy; I think that’s what you call it, it’s been so long. And then they gave me some medication and told me not to eat too many vegetables; that was it. You know; it was basically, “take some medication; you have to take it, and you might have ulcerative colitis, right now we’re just going to call it undetermined.”

Mickey Trescott: And you got this diagnosis once you had been paleo for a little while, too, right?

Susan: I didn’t get the official diagnosis until much later. This was way before paleo, when I was doing the yo-yo dieting. I didn’t know it was autoimmune; it didn’t have a name. It said, you might have ulcerative colitis, but you’re too old to get ulcerative colitis. Most people get it in their 20s.

Mickey Trescott: Isn’t that funny how you need to be a picture of a disease when you walk into a doctor’s office; otherwise you get kind of thrown out, door slammed behind you?

Susan: Yeah. So they just gave me the suppositories and told me I had to take them every day, so I took them for a little bit and of course it worked. And then I kind of forgot about it; and it would come and go over the years. Enter paleo, and I think in a way, paleo prevented me from getting my diagnosis as soon as I probably would have gotten it if I would have kept eating the Standard American Diet. Because I took gluten out; and I had some other health issues, inflammatory issues, pain related, so I decided that I was not; even though when I ate gluten I didn’t immediately feel bad, but once I took it out, a lot of things got better including my UP symptoms. And so I would go for 3, 4, 5, 6 months without any symptoms; and then they would come, and then they would go.

But I was a bandwagon jumper in early paleo days; whatever the newest thing that came down the road; Susan was like, potato starch; if you have ulcerative proctitis, potato starch is probably one of the last things that you {laughs} should do. And of course I would be doubled over in pain.

Mickey Trescott: You didn’t jump on the AIP bandwagon back then, though.

Susan: I did though.

Mickey Trescott: Eventually. {laughs}

Susan: I didn’t jump on the bandwagon, but of course I was one of those people; and this is what I totally tried to make sure people understand about AIP now; AIP is not more perfect paleo.

Mickey Trescott: Amen, sister.

Susan: You know? So when I wasn’t losing weight, and I’m using my little air quotes, well I just needed to eat less foods. So I did do 30 days of AIP, but never the full Sarah Ballantyne AIP where you take out all seed spices. I took out the bases; the Robb Wolf, Whole30 AIP list, you know what I mean.

Mickey Trescott: Mm-hmm. Mm-hmm.

Susan: And I never planned my reintroductions correctly, because I always had; like, I did AIP 30 days before Thanksgiving. And then of course, you can’t just do one thing at a time, so I never really got the full impact of what I think AIP could have been for me. And I still didn’t have an AIP diagnosis.

Mickey Trescott: Yeah, I was going to say, that was at a point where you still didn’t even really know that you had an autoimmune disease. Tell me about how you got the official diagnosis, and what that felt like when you made the connection that it was actually an autoimmune disease.

Susan: So, my chief symptoms, the reason I came to paleo; I talk about the binge eating disorder. I also suffer from severe fatigue. So my digestive symptoms always made it lower on the symptom list, whenever I talked to any kind of functional medicine person. So they were never really; and I think that’s my fault, and that’s part of the communication and collaboration; sometimes we don’t know that those symptoms are part of something bigger. And to me, losing weight was really important, and my fatigue was really important, so I was always trying to focus. That’s where that bandwagon jumping comes on. Adrenals, thyroid; what could it be? Going through all that whole list.

It wasn’t until, I think it was Mickey; it was Mickey. It was at AHS in Berkeley, which was how many years ago? 2014.

Mickey Trescott: Yeah, 2.5 years, yeah.

Susan: It was 2014, and that was right around when I decided that the pain was back, the blood; the bleeding was really quite severe. And I knew I was getting older, and I knew the implications. The colon isn’t a thing to mess with; when you’re pushing towards; I’m going to be 50 this year.

Mickey Trescott: Well and with some of those diseases, they take it away when it’s really inflamed. They remove it.

Susan: And Mickey said something to me; because she saw how many tomatoes I was actually eating back then, and she said; “Maybe you might want to think about cutting out nightshades.” And of all the things on the autoimmune protocol that I don’t want to give up; and sometimes it’s that thing that you don’t want to give up, is the thing that you need to give up; was nightshades, because I love Mexican food; I love tomatoes. We used to grow 3 tomato plants every year, my husband and I; and I would fill up big huge Tupperware full of cherry tomatoes and just eat on them all day. That was August 2014; and then I decided to talk to my doctor; my regular old, MD. And he referred me to a GI doctor who said I needed a colonoscopy. Because I thought I had SIBO, because that was the bandwagon I was jumping on then, you know what I mean? {laughs}

Mickey Trescott: Mm-hmm.

Susan: And he’s like; no, see that’s not where; even though, to me still, where he said I was bloated. To me still, that is still part of my small intestine, as well, so it could have been. So he did the colonoscopy, and then he said, “You don’t have cancer” which I think is what every doctor, after they do a colonoscopy, tells people. “Don’t worry, you don’t have cancer, but you have ulcerative proctitis.” And he was Indian, with a very heavy accent, and I said; I knew about ulcerative colitis, but I’d never heard of ulcerative proctitis, and I said, “Is that an autoimmune disease?” And he said yes; and then he said, “Here’s your prescription, you need to take this medicine every day for the rest of your life; and here’s a low-residue, low-fiber diet protocol.” And handed it to me.

Luckily; I had known Mickey {laughs}, and luckily all the places we’d gone to; all the seminars, and conventions, and conferences, is that I kind of, through Mickey, surrounded myself with AIP people. So I did cut the nightshades out, and I don’t eat a lot of nuts still to this day. I know that I don’t digest them well so I don’t really eat them often. I’ve learned, though; I just can’t eat anything every day. I can’t eat eggs every day; I can eat eggs occasionally. But the nightshades were the magic bullet, you know. And it was hard; and I didn’t eat a tomato for 2 years, and I didn’t eat a pepper or anything; and at home I still don’t.

But I did some more research; and I didn’t go back to that doctor because I didn’t understand the whole collaboration thing until Autoimmune Wellness Handbook, and I just thought I could do it on my own, you know.

Mickey Trescott: Well part of it; part of it is guiding that process. But I think, too, when you’re presented with only conventional options and no input from a doctor as far as, “Hey I’m trying this thing for myself, and it’s kind of working, can you keep monitoring?” A lot of doctors don’t really care to follow-up with a patient who is working like that, you know, so it’s hard.

Susan: Yeah.

Mickey Trescott: And I think too; Susan, you and I are pretty similar in the sense that we went off, and we studied nutrition, and we go to conferences, and we do a lot of reading; like, self-knowledge is really important to us, so it’s tempted to just be like, “I got this. I got this.” You know?

Susan: Yeah.

Mickey Trescott: And I do it too; still.

Susan: And I did, and the nightshades were huge, but I would still have periods; like I had a flare last, right before NTA conference last year. I had a really bad flare; and I don’t know if I had gotten glutened or what had happened. So when I had that flare, it was kind of a wakeup call that I needed to find a new GI doc, and I needed to find one that specialized in my autoimmune; that recognized autoimmune for what it was, and just, “Here’s a medication to take every day for the rest of your life.”

So my husband actually did the research, and found me a doc at Stanford, which I live in the Silicon Valley/San Francisco Bay area, so Stanford is like the gold standard. We had a great talk about my autoimmune disease. He said how far along; further along I was than any of his patients, because I had gotten the diet down. He recognized that certain foods weren’t good for people with ulcerative proctitis; although he also wanted me to get a flu shot and make sure to wear SPF 80 on my face.

Mickey Trescott: {laughs}

Susan: Because {laughs} people with autoimmune disease can get sick more often. {laughing}

Mickey Trescott: {laughs}

Susan: But he does have me on a regimen now, where we’re going to; he brought to my attention the fact that just because I don’t have symptoms, doesn’t mean that the tissue in my colon is healthy.

Mickey Trescott: Mm-hmm.

Susan: It’s a sign that it could be; but it still could not. It could be just that it’s not unhealthy enough to bleed, it could still be inflamed. So he said what we needed to do, is he has me on a regimen where I took my medication every day for 30 days; then it was every other day for 30 days; and now I’m on every; he didn’t recommend going to every 3 days, but I’m on every 3 days {laughs}.

Mickey Trescott: {laughs}

Susan: And I have to say that it’s been the time that it’s been, at the same time keeping my diet super clean; is that I’ve been, my digestion has probably been better than it ever...