Mary* was a successful triathlete before SOD sidelined her. She shares how her swift, attentive and collaborative care team helped guide her to recovery, avoiding invasive procedures. Through diet, rest and both alternative and traditional medicine, she is thriving and experiencing a lower level of SOD pain.
Until about 3 years ago I was a competitive triathlete and full time scientist and mom. At the start of 2014, after some aggressive weighted core work, I experienced really tremendous upper right core spasms. I could literally see the spasm through my skin. The pain continued, with greater intensity at night, for several days. Fortunately, I'm the daughter of an extremely talented ICU doctor, so I was able to stop by the ER and get a decent work-up as soon as we realized something was "off." The collective thinking was that I likely had gallbladder issues (based on symptomology and family history) as well as a hernia. Since you can't treat both simultaneously due to infection risk, the surgeon went after the hernia first. No hernia was found.
I recovered fairly well, despite some significant cutting through my core muscles. I got to race one time that summer before things started feeling "off" again. I chalked it up to pushing too hard and not taking any vacation. I slowed down and started training again at the start of 2015. This time I got sick really quickly. After a lot more testing, all was normal-seeming except I had an 11% ejection fraction on HIDA. While this is low, in fairness, the surgeon (again, an excellent fellow) said he had patients walking around with no pain with similar ejection fractions. There was no evidence of stones and - flashing forward to the cholecystectomy (gallbladder removal) - only saw evidence of inflammation, nothing more.
Unfortunately, I did not recover well from the cholecystectomy procedure, which was in early March. By June I'd been referred to a GI doctor. I'm again very lucky to live in Indianapolis and be working with docs at the epicenter of the EPISOD trial. I was diagnosed right away with SOD, type 3 suspected. I was put on Bentyl and told to eat low fat foods. The Bentyl turned out to be a bad deal for me as was the low fat diet modification. By July, I was in chronic level 8 out of 10 pain. I was in despair, wondering how my healthy life could so dramatically be ripped away, also wondering how I would survive. The pain was incredible. But, again, I was tremendously lucky in that, where some failed, others of my "team" had help to provide.
Right away my swim partner, a nuclear medical professional, informed me I needed to totally stay away from pain meds given their mechanism of action and induction of gut spacisity. I was referred to a brilliant nutritionist who saved my life, taking me through elimination as well as teaching me how to modify all aspects of my eating life to accommodate a lot of change. I had a connection to an exceptional group of psychiatric doctors who I worked with on seratonin modification, in collaboration with the GI doctor. I had the best of both worlds in having the brain expert help guide the gut expert in the optimum approach.
Lastly I worked with a DO who specializes in nutrition issues as well as a therapist (to help me deal with the trauma of losing all my athleticism, etc) and a physical therapist who specializes in pain management techniques including visceral massage. Wow, that's a lot, right? Yeah it was a lot. And in many cases I was almost tempted to be jealous of friends who had cancer because their treatment plans were scripted and predictable as well as their medical teams were coordinated for them. But after slogging through a lot of options and potential solutions, it seems to be going really well, with each month better than the last for the last eight months.
Here is what I'm doing:
• Exercise is still the biggest trigger of a flare, so I have taken the intensity way down get and avoid all intense core work when I need it.
• Rest is a priority. Good quality sleep and weekend naps are not optional.
• Visceral massage monthly.
• We're slowly titrating up on Cymbalta, currently at 30mg/day. Likely will test 40mg/day next month. We test for 4 month blocks to adequately judge efficacy.
• Constipation is chronic, so 100 oz water every day. Also 250-500 mg Magnesium as (DiMagnesium Malate/Magnesium Citrate USP/Magnesium Lysinate Glycinate Chelate). This is a form that is easily digestable and eases constipation as well as spacisity.
• Orthotricyclin to dumb down the effects of my monthly cycle, which tended to exacerbate pain.
• And finally diet control! This is no joke and every bit as critical as the sleep and exercise modifications. No caffeine ever and no alcohol ever—not even a sip of my husband’s beer (learned that the hard way). No grains, no dairy. I took the LEAP mediator release food sensitivity test and it was right on the money with my food intolerances. No beans. Limit sugar, possibly because it is a stimulant. For flares I get super strict on further limiting foods that are generally irritating to the gut like fruit, spices and anything acidic like vinegar. Also absolutely no artificial sweeteners (most have corn in them and corn is my #1 food trigger). Since corn is in nearly 100% of processed foods I eat pretty much whole food.
The diet is another super long story in itself but the short version is I'm eating more delicious and varied food than ever before. It's actually a blast finding and creating new recipes! Overall, I'm still gaining back functionality but am at about a 1-2 pain with some 3 in there. Very manageable. The heating pad on a very hot setting with a rest does wonders and usually puts me back to better fairly readily. I'm nervous to a degree about relapse, but it seems I'm mainly on the right track and hopefully will keep learning how to manage my guts and keep them from really shutting me down like last summer.
*Mary is a pseudonym. The author wished to remain anonymous. This is a true story.