Category: SIBO

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What is healing?

Image related to healing

Where to begin. What do I want my blog to be about now as I move away from HSCT? I’m still tracking my body, I still have MS, I’m still resolving SIBO. But more than anything, I want to begin to write something comprehensive, cohesive, impactful perhaps.

Where am I sitting right now? I’m thinking of this journey, this writing journey, as a description of healing the body in a society that doesn’t look at factors of healing other than allopathic medications and interventions. When allopathic medicine runs out of answers, then what?

I’m looking at healing my spirit, healing trauma, healing relationships; caretaking little molecules of discord that circulate in the body, intercept with cells, and ask them to work harder and dance out of step with their intentional way of being in the body.

I’m writing about healing from all angles with the curiosity of what is possible. I’m also navigating my own relationship between logic and reason and spiritual seeking. Though I don’t feel totally comfortable with that word, spiritual. Holistic seeking perhaps – ways of looking at healing that aren’t always explainable, don’t have evidence-based research papers, don’t get the validity in the world of science. A way of exploring healing that asks for the word surrender, letting go of the reins, giving up the belief that I have control.

Image of healing

I have no doubt that one connection as it relates to healing and health between the emotional world, the psychospiritual world, and the physical anatomical world, is the pressure of stress. That makes sense to me.

But can you unravel stress? Can you go back in time, take that DeLorean back to the future? Is it possible to find the initial threat(s), trace the breadcrumbs back through time to the origins of things? Does it ultimately even matter? I think that is my question, what I’m wondering.

I’m looking to poetry, to counseling, to naturopathic medicine, to psylocibin and psychedelics to learn more about my origin story. I am exploring psylocibin micro dosing to see what is possible there. The brain has the capacity to bind and connect psychedelics with evidence-based research into medicinal mushrooms other than psylocibin – open the brain through psylocibin, and then let the molecules of other fungi in to help build new neuronal pathways.

Fungi

What I’m seeking is healing. What that means I am uncertain about. On one level, I want healing to mean everything. Full complete restoration of body, a return to the place I started where I could dance, climb, work hard, contribute physically.

At the same time, I’m wondering if healing is coming to a place of wholeness within acceptance of what is – living inside this body, the way it functions, the way it moves, the way it has limits, and still feel alive, full, and whole.

And maybe it’s somewhere in between. Maybe there’s a way that the work – the digging, the origin story search – finds some recuperation of lost function to the point where there is a balance place where I can live with less grief and loss.

Perhaps it is living inside and through the grief that offers a doorway, a window, a portal – an opening to something new – something that I cannot control, plan for, or orchestrate with the tools I currently have.

I have been thinking about the muscles I have developed to cope with this world. The strongest, most developed, is the muscle of competence. I can get things done, I can keep track of things, I can pay the bills, I can make the appointments, I can keep moving forward and keep all the ducks in a row, I can keep the ducks of others in a row – competence, I’m a bag holder.

Competence

I have the muscle of articulateness, the ability to use words spoken and written, in ways that others comment on, commend me for, admire me for.

I am a doer and a communicator.

So, what does that leave? Which muscles are atrophied? The muscle to live wholeheartedly, to be open enough to risk being wounded and hurt. The muscle to speak honestly and clearly in the face of fear of rejection and disappointing others. The muscle to be my own voice, not the voice of appeasement and smoothing things over.

The muscle of joy is weak as well. The muscle of being open to and experiencing joy and delight. The muscle of feeling tickled, giggly, silly, playful, messy, childlike – open to awe and wonder.

Joy

Where does that leave me in something like this, a blog post to others? It leaves me a human living with MS, wanting to share that story, but not wanting it to be the whole story of either this blog or of my life. I do not want to dwell here, I do not want to live here. I want to live in a house with more furniture than that. I don’t want the story of MS to be the walls of the house, that’s too much space for it to take up, too much structural integrity. I’m not even sure it is a piece of furniture. I think it’s a roommate, one that is sometimes an ally and sometimes an antagonist.

I want to describe my experience of living with MS and how it fits into the picture, but I don’t want to tell the story as if MS is everything, and I don’t want to live as if MS is everything. I want to find the proper place and space for it in my life. I can’t ignore it, ignoring it is as dangerous as letting it take up the whole space. What is the balance? I think the balance shifts depending on the day, depending on the degree that it is shouting or the degree that it is in the background. That is the snowflake nature MS, it is not a constant it is always changing, always elusive, always here, but not always loud.

So, if you are patient with me and interested in this story in all its shapes and sizes, I thank you for sticking with me.

As I’m sitting here now, today I seem to have found a good mix of medications and movement. SIBO appears to be abating, I feel stronger. That’s the story right now. If I were to try and do a blog post every two weeks, it would be stories like this. Where am I now? What am I learning? What am I integrating? Where is my grief? Where is my joy? Where is my deeper connection to life? How do I celebrate? How do I build and contribute? How do I connect.

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I wrote this post almost a month ago. I then went through a very dark time related to SIBO and finally getting COVID after avoiding it for almost 3 years. I have come out the other side of that tunnel and am back at this place as I described above. I have decided not to go into detail about that journey because I don’t see the point in reliving it. I say this only to explain how long it is taking me to create this post.

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…And SIBO was its name-o!

Garden

Hi y’all, it’s been awhile…

It started with a niggling, a little scratch in my throat, the slightest bit of congestion in my nose – my first virus since transplant in February 2022 – one full year virus free. It was a very small virus, nothing at all, barely noticeable. But it tipped my physiologic balance, and I ended up in the emergency room on a Saturday with a UTI allowed to thrive in a disrupted immune system.

The round of antibiotics used to suppress the UTI, to the best of our understanding, shifted my digestive tract into dysbiosis – all the tiny bacteria in my gut, the carefully balanced harmonious communities, lost their song.

Slow motility (constipation by a gentler name) combined with the disrupted microbiome led to SIBO (small intestinal bacterial overgrowth). This is a condition where the bacteria that normally reside, happily and helpfully, in the large intestine get translocated up into the small intestine where they don’t belong. There, the bacteria feast – happy little creatures farting out their metabolic byproducts in someone else’s house. My whole abdomen became bloated and distended, a taut balloon, a pregnant belly with no child joy to offset the suffering. My gut in turmoil triggered my MS symptoms into overdrive – muscle spasms and off-the-charts spasticity.

Here are some quotes from my daily writing practice:

“Who knew that muscles around the torso could create a hug so tight you didn’t want to love anymore?”

“Those of us with MS learn to tolerate by inches by centimeters by millimeters. We normalize discomfort. We normalize living with it.”

“It could be wild rage trying to find its way out. Or maybe wild grief throwing around like a hurricane inside of a small room with no vent out for the circulating wind.”

“It’s the smallest thing – sitting up in the morning, putting my legs and my feet to the floor, considering standing with their persistent rebellion. No one can see it, but it can feel it like an elephant sitting on top of me – that strong, that immense. It looks like nothing from the outside. It’s the smallest thing to others, but it’s an elephant to me.”

In trying to sort this out I have worked with my PCP and undergone colonoscopy prep without the colonoscopy -twice! – trying to empty out the meters of small and large intestine. When that didn’t work, I was referred to a neuro-gastroenterologist – fancy, big title. He was a sweet guy, on the young side, who always wears poop emoji socks when he sees patients. Cute.

poop emoji socks

By the time I met with him, my PCP and I felt confident that I had SIBO. He agreed that I had “dysbiosis” and prescribed rifaximin, an antibiotic that very specifically targets the bacteria in the small intestine and nowhere else, which insurance doesn’t cover, and is incredibly hard to get. I happened to mention this to a friend and neighbor who had gone through SIBO, and she said, “oh I have a bunch left over that you can have”. Random and lovely – and saved me $2500.

SIBO Treatment

My frustration with the gastro doc was that he didn’t listen when I said (based on my extensive research and consistent with my symptoms) that I believe I have the form of SIBO known as “methane dominant” where I would need a second antibiotic (Neomycin) to be effective at eradicating the bacteria. He said that particular antibiotic wasn’t available due to a national shortage (turns out, not true). He also did not do the official SIBO testing (an involved three-hour breath test process) which would have confirmed (or ruled out) the methane-dominate variety.

To speed this story up, I did the antibiotics, and also reached out to my MS naturopath who referred me to a different naturopath in his practice with a lot of experience with SIBO. She ordered the breath test. which came back with a very clear SIBO positive, specifically methane dominant. The naturopath ordered another round of rifaximin and added it to the Neomycin which, it turns out, was very easy to get. I have now, as of yesterday, completed this cycle of treating this bacterial beast.

SIBO breath test results

Right now, as I write this, I am filled with hope and excitement.

As the antibiotics started to do their work my energy has come back to a level I have not felt since May of 2022.  My body is loosening up, the spasticity is so much better that I can’t quite believe I have lived as long I have this impacted.  It’s possible that SIBO has been here at a low level for a lot longer than this last February.  My body and life are coming back online.

This round of treatment has not taken it all away, I can tell it’s not gone.  I’m doing a second breath test today to figure out where I am now and will be on a very specific diet until those results come back, at which point we will consider next steps. The image I shared above shows the four main treatment pathways and we will figure out which one is next.  It’s a long haul, but I’m totally fine with that because I can tell it is 100% worth it.

In the meantime, I bumped into a spoken word poet/artist, Andrea Gibson, who brought me to tears, made me smile, reverberated inside me as someone who has found a clear and loving voice inside of a very difficult personal world. Someone who has found the clearest connection to love in the face of death that I’ve ever encountered.

Here is a wonderful podcast with them.

The day after bumping into Andrea Gibson, I heard a podcast with the poet/essayist Ross Gay whose focus is all about joy and delight. I’m just beginning to read his books, but his voice is infectious and a delight in its own right. His work is all about paying attention. I am learning that joy and delight can look like tears, can touch something that breaks open and bleeds.

Ross Gay Book of Delights

OnBeing Podcast with Ross Gay 

So, I am reading and listening to poetry and audio books, re-reading my favorite Mary Oliver collection, reading Pema Chodron – digging into Buddhist philosophy, writing, meditating, researching, using music therapy to aid my PT, seeing a counselor. I have tried supplements, tried gut-directed hypnotherapy, tried to find delight, joy, and gratitude in the world, no stone unturned. Looking for ways to be at peace with pain if it doesn’t leave and doing everything in my power to usher it out.

Kira is home (along with her boyfriend Zac) for the summer, working on the farm across the street and I am soaking up this time with them – perhaps the last stint of living at home.

Kira and Rosie on the farm
Kira and Rosie on the farm

What I want to tell you is that I’m still here. I’m still on the riverbank with my toe in the water, soaking up life, connected to it enough. Craving a deeper dive, but proud that I’ve got that toe in at least. I can feel the vibrancy of life, I can still be brought to tears by a piece of poetry.

Portrait
Me as my hair grows