After 10+ years of battling one health issue after the next I finally sought out treatment from Mayo Clinic in Rochester MN. I was terrified to go, but I knew that if I didn't make a change soon, I may not have anything to change.
The GI specialist I saw up there was absolutely phenomenal! I thought all my GI issues were actually linked to my stomach/digestion (which a few were) but he was also the doctor who sent me to a dermatologist (which I’d seen at least 4 of in Bozeman/Billings) and the dermatologist at Mayo found my most important diagnosis thus far.
For a better explanation on my GI issues: I had been diagnosed with IBS (irritable bowel syndrome) at least 7 times in Bozeman – that isn’t an exaggeration. All that diagnoses means is that the person has fluctuating diarrhea and constipation with no real reason as to “why”. I had colonoscopies, endoscopies; CT scans as well as MRI’s in Bozeman beginning at 14, which confirmed literally nothing. Other than the fact that they truly had no damn clue what was going on with me.
Another medical abnormality I had acquired in my lifetime was the damage that had been done to my umbilical cord during birth because of this, my belly button had leaked my entire life. It was something I brought up to every single doctor I ever consulted with, including the dermatologists here in Bozeman and they would either do nothing with it, or they would prescribe a topical hydro corticosteroid antibiotic cream that would make it 10 times worse every time I tried it.
Before leaving for Mayo Clinic, my Naturopathic doctor at the time was convinced the belly button leak was fluids coming directly from my stomach and that is was creating almost all of my digestion upset…then she too prescribed the same antibiotic ointment and this time the pain and irritation it caused were almost unbearable. I reached out to my Acupuncturist and Chiropractor that I work for part time and they suggested that after all they’d seen me go through, that Mayo clinic is where they were going to refer me to.
When I first saw the GI specialist at Mayo, he immediately dismissed the IBS diagnoses (informing me that all it was, was a catch all for doctors who didn’t know what was wrong but needed to provide a diagnoses for people’s “piece of mind” as well as something to bill insurance so they could be paid). He suggested GI scans, pelvic floor testing and blood work – all of which I was a little irritated about at first because it was all stuff I felt like Bozeman doctors had preformed before. That was completely de-bunked with my first GI scan which was one of the craziest tests I’ve ever had performed to date. I swallowed what was essentially a ‘radioactive’ capsule (which I wasn’t thrilled about) then they scanned my GI tract for approx. 15-30 minutes a day for 3 days. Their goal was the watch the capsule move through my system to see if it would get stuck at any point, or if my peristalsis (movement in my bowels) was off in any way.
During those 3 days I was also seeing other doctors for my thyroid (Endocrinologist) as well as my headaches (Neurologist). When the GI specialist determined that my peristalsis was fine and that the “leaky belly button” wasn’t coming from within my intestines, he was sure my GI issues were partially impaired by my pelvic floor muscles. I thought that sounded crazy, like real crazy and almost didn’t want to go through with the testing. However, thank goodness I did because my pelvic floor dysfunction was 100% contributing to my fluctuating constipation and diarrhea. Once we tested those muscles and got a confirmed diagnosis of pelvic floor dyssynergia, I began PT to help treat this condition (which is essentially PT of the vagina and anus). After my first session of this, the GI specialist sent me straight to Dermatology to address my leaky belly button further.
Upon arriving there, the doctor swabbed my belly button and sent it off to a lab immediately. He prescribed me this medication to turn my urine bright orange to see if the color of my belly button fluid would change, in order to establish if this fluid was seeping out from my bladder. Thankfully the answer was NO! (That would have been some extensive surgery.) Not even 2 hours after the Dermatologist sent my sample to the lab he called me back and said I needed to get back up there and start antibiotics right away because I had a staph infection in my belly button. He said it was a fairly aggressive one, and that it very well could be contributing to 60-70%+ of my other symptoms.
When I went back up to his office they spread the skin apart yet again to show me exactly what I was looking at/for. The infection had started to eat away at the surrounding tissue. The fact that I was so crazy about keeping it clean all the time is the only thing that allowed me to make it as far as I did. I was keeping it just clean enough that the infection would almost heal completely but not quite, the skin would scar slightly and then the infection would start all over again. My body was literally fighting a staph infection for over 10 years and I had NO CLUE. Neither did any of my 15+ doctors here in Bozeman. Come to find out the hydro corticosteroid that each doctor had been prescribing me actually “feeds” staph and was giving it a nice little environment to keep thriving in there; which is why it always made things so much worse each time I tried it. He informed me that over the next 1-2 years there was a high probability that the infection would have eaten through the remaining tissue and likely spread to my entire body. (This could have been fatal). Hearing this confirmed my original thoughts, that if I hadn't taken control of my healthcare when I did; I may not have gotten the opportunity to.
This Dermatologist prescribed an appropriate topical anti-biotic as well as a pretty harsh oral antibiotic and within 48 hours I started to feel like myself. My constant brain fog I’d been battling for actual years began to lift entirely. My mood was elevated, my sleep was AMAZING and the swelling around my thyroid and other parts of my skin started to dissipate. The fact that my body had been battling an active staph infection for so long is what started to “tank” other systems within me. My adrenals were shot; cortisol levels non-existent, thyroid completely out of whack, inflammatory markers on blood tests through the roof etc. Once my body was able to receive some much-desired assistance with the infection my other bodily functions began healing and slowly reaching a new version of normal. I did have a few weeks of recovery just from being fatigued after all the anti-biotic use; but in all honesty that level of fatigue was still better than what I’d been experiencing for 10+ years.
I went to Mayo clinic in July of 2017, and almost a year later I feel like a completely different individual. I’m still healing; it takes a few years to recoup your immune system after an event such as this, but I’m feeling better and better all the time. So now that I’ve given you a book to read on my experience, I hope any of you about to embark on a journey of their own to Mayo Clinic - feel a little more secure that any answers you receive from Mayo clinic will be SIGNIFICANTLY better than anything you’ve done here in Bozeman! Hands down! I came back home and started to treat some of my remaining health issues on a much more natural basis than what some of the doctors up there recommended (with things like Acupuncture, Chiropractic, Chinese Herbs, diet changes and supplements) which may have made my healing process take a smidge longer, but looking back I wouldn’t do it any differently.
If you feel like the doctors you're working with aren't giving you the answers you deserve, or aren't doing their part to send you to someone who will - remember that you have the right to SPEAK UP! You are your own best advocate and I can't begin to express that enough.
Health begins with you.
All my love,
Tristin Halie Fleetwood
Certified Health & Wellness Coach/Licensed Esthetician