Today’s post is the most personal I have ever shared on this blog. For months I have mentioned bits of my health struggles, but never told the whole story. Why? First, it’s frightening to share such personal details. Second, this is very much a fight I am currently in – I am not “healed” and I am not here to tell you how to cure yourself. I can only share what I have been through up to this point, what has worked, and what I will never do again.
Since I first shared my health struggle from longterm travel, I have had people reaching out to me. I feel so much solidarity chatting with you guys, and from reading about others’ health stories on Instagram or online. I have decided it’s my time to pay it forward. I hope that by sharing my health journey, I can help anyone trying to live their best life but also struggling with chronic illness.
This is a long one. For ease of navigation, I’ll be discussing:
- My symptoms
- How longterm travel ruined my health
- Doctors and tests
- Medications and interventions
- My current health state and what’s next
So grab a cup of coffee (or matcha, if you are so inclined…) and settle in for the rollercoaster that is my health journey.
My health journey: Symptoms
The more we talk about uncomfortable and stigmatized health symptoms and conditions, the more people will know they are not alone. I can attest that going through chronic illness can feel like the most lonely thing in the world. I think this is because even your own body doesn’t feel like it is on your side.
So with that in mind (and also the fact that you guys asked for gory details!), here are my symptoms…
- Constipation (I’m talking 7-12 days at a time, at all times)
- Gastrointestinal bleeding
- Stomach pain
- Irregular cycle
- Memory loss (yes… I’m serious)
- Muscle and joint pain
- Vitamin deficiencies (specifically D and B12, severe enough that I had to get injections at the hospital)
Looking back, it makes sense that my health struggles emerged during a STRESSFUL in my life. I moved abroad all by myself (stressor 1), all three of my family’s dogs died that January (stressor 2), the following year my housemate died in our house (stressor 3), and all the while I was under the stress of a Masters degree (stressor 4) and two part-time jobs (stressor 5, stressor 6). There is a reason that stress is the root of all disease!
My symptoms got gradually worse, and over the past two years I experienced multiple “flares” where the symptoms severely increased for weeks at a time. There was one point of no return, though and that was…
Long term travel ruined my health
Okay that is an extreme way to put it, but yes, longterm travel ruined my health. It also saved it. If it wasn’t for the massive flare I had during longterm travel, I wouldn’t have been driven to finally see the doctors. I haven’t said it before, but it got so bad that my health was one of the reasons I didn’t bother trying to continue living abroad, and instead rushed home to the USA when my visa expired. I needed time to figure out what was going wrong in my body. But… I’m getting ahead of myself.
Related: How Travel Made Me Sick
After I finished my MSc, I left to fulfill a dream of four months of longterm travel throughout Europe. I started out with a month-long Eurotrip with my boyfriend. Whilst this was one of the best trips of my life, I felt like I was constantly pushing through, fighting my body, in order to enjoy the experience. I was experiencing ALL of the symptoms listed above.
Near the end of the trip my boyfriend insisted I see a doctor back in the UK. He pressed on how it doesn’t matter if we go to the Gastroenterology Center of New Jersey or someplace in the UK, it didn’t matter! That was a wakeup call. After Googling my symptoms, which said in big bold unavoidable letters: EVERY TIME YOU HAVE GASTROINTESTINAL BLEEDING YOU NEED TO SEE A DOCTOR… I had to agree.
My journey to a diagnosis: Doctors and Tests
What is more frustrating… the actual health problems, or trying to navigate the health care system to solve them?! I’ll get back to you on that one.
A lot of you have asked about specific doctors and tests. My journey with doctors has become so convoluted that I am not going to share it in excessive detail. Instead, here are lists of the doctors and tests I’ve had. Feel free to message or email me (firstname.lastname@example.org) about specific ones.
Doctors I’ve seen:
- GP in the UK
- GP in the US – the benefit here is I see the same doctor every single time. If you have the opportunity to do this, PLEASE do
Why I haven’t seen a holistic/functional doctor: Being in the US, I am relying on what my insurance covers and that is traditional medical doctors! I would love to see a more holistic medical professional in the future when I can afford it.
Diagnostic tests I’ve had (roughly chronological order):
- Blood test for inflammation
- Stool sample for bacterial and parasitic infections
- Colonoscopy – Mine found scarring on the lining of my intestines but no colitis or crohns
- Food allergy and intolerance blood test – I had the RAST test, which found low level allergies to egg white, coffee, chocolate, and cow’s milk. I had a severe allergy to Brewer’s Yeast.
- Skin prick food allergy test – meant to confirm the RAST test results, however the results were conflicting!
- Sitz marker test – This tests intestinal motility. If you have IBS-C or CIC symptoms you should get this. I swallowed 3 pills with 24 radioactive markers each (shaped like little circles). I then had abdominal x-rays on days 5, 7, and 10 after the day I swallowed, to see how they (and food) progressed through my intestines. Which was not well.
Over the last few months I have been told I have… PCOS, IBS-C, CIC, severe food allergies, no food allergies, intestinal motility disorder, neuromuscular disorder, pre-Crohns, Chronic Intestinal Pseudo Obstruction.
A gastroenterologist told me that the only way to cure me is to CUT OUT HALF OF MY COLON.
(after they told me this, I cried in a parking lot for 30 minutes 🙂 )
Ultimately, my doctors do not know what I have and I do not have a diagnosis. I seem to be living with a range of life-impacting symptoms, but no discernable overarching cause. Based on my symptoms and test results, I fit into a lot of different categories, but none completely.
Lack of a diagnosis, and not knowing if I will ever have a diagnosis, has been one of the toughest aspects of this health journey. But I suppose that like people themselves, it can be hard to fit medical disorders into “boxes.” I am still going through tests (more info at the bottom of the post) and as annoying as that is, it also gives me some hope.
Medications and interventions
Despite not having a diagnosis, my doctors apparently felt no qualms about putting me on very strong medications. Unfortunately I have now failed all of these medications. My symptoms are similar to IBS or CIC, but I do not react to the traditional treatments for those syndromes.
Medications I’ve tried:
- Linzess (medication for IBS/CIC, no effect)
- Amitiza (medication for IBS/CIC, I had an allergic reaction)
- Trulance (medication for IBS/CIC, no effect)
- Miralax (OTC for constipation, no effect)
- Spironolactone (medication for PCOS, currently taking)
I’ve also tried interventions besides medication. All of these were with the advice of a medical professional.
More holistic interventions I’ve tried:
- Low FODMAP diet: I read and lived by [amazon_textlink asin=’0451497724′ text=’this book’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’bafa0429-6d18-11e8-92e8-eb00a6007835′] for two months. Unfortunately it didn’t help me much, although I did discover a minor reaction to lactose and oligosaccharides, so I now limit those.
- Cutting out coffee: Thankfully this had no impact which means I now drink coffee again 🙂
- Yeast free diet: Long story with this one. Basically it’s hard to tell if it helped because I started a bunch of new things at once. I no longer eat yeast free but do limit my yeast intake. I am waiting for more test results regarding this.
- Fiber supplements: [amazon_textlink asin=’B000MM2RZM’ text=’Benefiber’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’3216aae2-6d1f-11e8-bfc1-8b4b30cd5122′], [amazon_textlink asin=’B00TDF9JOG’ text=’Psyllium Husk’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’3d32c0e8-6d1f-11e8-b433-474c0dfbb16a’], [amazon_textlink asin=’B001HTG4NA’ text=’Flax seeds’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’4937fe06-6d1f-11e8-a4a2-09e8f93030f0′] – These are common solutions for constipation. However I actually found they make my bloat worse.
- [amazon_textlink asin=’B00CU3SX4K’ text=’Magnesium citrate’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’5d9d65c2-6d1f-11e8-9856-a50225605853′] supplements: This really helps me and I continue to take it. When I have particularly bad flares, I will drink an over the counter magnesium citrate drink to “flush out the system” if you catch my drift. I also do this before introducing a new medication or regimen. I do this under my doctor’s guidance so please consult your doctor before you try Magnesium Citrate “cleanses.”
- Cutting out xenoestrogens / switching to nontoxic products: [amazon_textlink asin=’006213079X’ text=’this book’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’7f92c902-6d1f-11e8-9a26-a5283352b6ca’] is invaluable for those with PCOS or hormonal imbalance. I started cutting out xenoestrogens after speaking with my gynecologist.
What I’m doing now
This begs the question… what am I doing now? Am I cured?
In short: No. But I am feeling better! I’m slowly getting to know my body and its illness, and find what works for me. Like I mentioned, I hope to see a functional medicine practitioner in the future. Right now, though, I am working with my team of doctors. My most recent visit was with a dietitian who was very helpful, especially regarding my newfound food allergies.
My current health regimen:
- [amazon_textlink asin=’B00CU3SX4K’ text=’Magnesium Citrate’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’a9464521-6d17-11e8-8f3a-b5d023fd3df2′]. I take this every morning for my constipation symptom and it is the most helpful supplement I have ever taken!
- [amazon_textlink asin=’B00K6JUG4K’ text=’Collagen’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’3247b1d4-7994-11e8-a491-b1b608de301b’]. I love collagen and take a scoop in my coffee every day. It particularly helps with my joint and muscle pain. It is also supposed to prevent small intestine permeability and promote gut health. I love both [amazon_textlink asin=’B06XRC3B6M’ text=’Vital Proteins Collagen’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’5fe517c0-7994-11e8-8c03-fd2ebbee88b6′] and [amazon_textlink asin=’B00B01YC98′ text=’Neocell Collagen’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’595da541-7994-11e8-bf18-3956b98eb03a’].
- Probiotics: I recently started taking a [amazon_textlink asin=’B00AUG7YQM’ text=’high quality probiotic’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’c2a94b5b-7996-11e8-b734-bddb577f045c’] specifically geared toward colon care. I also drink a shot of GTs coconut kefir in the morning (similar [amazon_textlink asin=’B06ZZZP8QT’ text=’here’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’dbef538f-7996-11e8-9fd0-9f7eecf0f7b5′]).
- [amazon_textlink asin=’B00GZ9GWD4′ text=’Daily multivitamin. ‘ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’bc77877a-6d19-11e8-b931-d51250dc5c67′] Vitamins aren’t the end all be all, but when you have intestinal disorders it is important to up your vitamin intake because your absorption pathways are inhibited! I take a daily multivitamin with high B12 levels which has helped with my fatigue 🙂
- Coffee. I drink 1/4 cup of French Roast in the morning. Coffee is a natural diuretic (yes, even decaf coffee – it’s from a property in coffee, not the caffeine). I cut it out for a month but had no negative effect when I reintroduced it. I have a[amazon_textlink asin=’B01J4O0T4E’ text=’ French Press ‘ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’06dfc1b5-6d18-11e8-8ccc-675f3ace89f8′]that I love because it makes preparation fast 🙂
- Peppermint tea. I drink this every night and it soothes and helps with bloating so much.
- [amazon_textlink asin=’B00DL9TAOE’ text=’Ashwangandha tea’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=’d2886f22-7993-11e8-aac8-9ff85fa6fb06′]. I drink this in afternoons. Ashwangandha is an adaptogen that is supposed to help reduce anxiety and balance hormones. I was skeptical so I started with an inexpensive tea rather than buying the actual powder.
- Limit lactose and oligosaccharides. While the low FODMAP diet wasn’t particularly helpful for me, I did confirm suspicions I already had that dairy and beans/legumes/garlic/onion can make my bloat worse. I still eat these foods but I limit them, a la the “bucket analogy” in the [amazon_textlink asin=’0451497724′ text=’best low FODMAP book ever!’ template=’ProductLink’ store=’sarahbence-20′ marketplace=’US’ link_id=”]
- Exercise. This is a big deal for me in terms of stress relief. Recently I have been focusing on strength training and yoga.
- Nontoxic beauty products. Because I have PCOS, I have been removing xenoestrogens from my beauty and personal care routine. Everyone with hormonal imbalance should do this!
What the future holds
While all the above products and habits are helping me feel better, I am not “cured.” I am still bloated and in stomach pain nearly every evening, some worse than others. I am less constipated than I was, but still go days at a time and have regular flares of 7-12 days. I’d say that my biggest improvements are in muscle and joint pain, fatigue, and vitamin deficiencies. I also haven’t had severe gastrointestinal bleeding for a couple months. I put this healing largely down to the supplements I’ve mentioned above, as well as a much slower-paced life.
My health journey is most definitely not over. Here are some things coming up:
- Seeing a gastro expert: Having failed my final medication (Trulance), my gastroenterologist is now referring me to a specialist in Ann Arbor, Michigan. This specialist is the USA expert on gastrointestinal and motility disorders. Part of me is excited for this, but mostly I am nervous. My biggest fear is getting part of my intestines cut out, and I am praying it doesn’t come to that.
- Testing everything: In the mean time I am pushing my GP to test me for EVERYTHING that we haven’t already. All along they have been assuming this is a gastrointestinal disorder, but what if it isn’t? I don’t want to miss something simple and end up with a drastic surgery. So I am undergoing tests on my thyroid levels, hormones, and for a potential yeast infection in my intestines.
- Traveling mindfully. I am determined not to let my health troubles prevent me from doing what I love, and that is travel. Unfortunately travel doesn’t seem to agree with my intestines but I am trying to travel mindfully and find solutions to travel and be well.
If you’ve made it this far… thank you SO much for reading. I only hope that my struggle through my health journey can turn into something helpful for all of you. I will continue writing about my journey. If you have specific questions or requests for a blog post, please comment below or email me at email@example.com.
Below, I will include a carousel of some of the products/books/supplements I use and can recommend!
[amazon_link asins=’B00K6JUG4K,B076KYFDL1,B00B01YC98,B00AUG7YQM,B002ZIDELM,B00CU3SX4K,B073NTQXFF,006213079X,0451497724,B01J4O0T4E’ template=’ProductCarousel’ store=’sarahbence-20′ marketplace=’US’ link_id=’62ef57bd-7999-11e8-9d6c-51dd13cad206′]
*Some of the links in this post are affiliate links. When you make a purchase through one of these links I may make a small commission at NO extra charge to you. Thank you for supporting Endless Distances (and my Functional Medicine Practitioner fund, lol).