Today’s story is about the journey to diagnosis of two parasites, SIBO, and more plus Gut Garden – the business that blossomed from it all.
You will heal. I will help.
Today’s story is about the journey to diagnosis of two parasites, SIBO, and more plus Gut Garden – the business that blossomed from it all.
Good morning! Today I’m sharing one of us – a Gutsy Girl’s story with severe ulcerative colitis.
Today we are chatting Celiac, SIBO, and eating disorders….but this isn’t my story.
There is still hope. There is always still hope.
I received the below message on Thanksgiving Eve this past year. It’s long, but because I know my readers, like 75%+ of you reading will be able to identify with her story on some level (she’s been through it all).
I have started to write you many times since I found your blog some months ago, but have always hesitated out of fear that I would come across as “that nutty girl that found me on the internet.” The first time I read your story, it brought tears to my eyes. I immediately showed my husband and said “look! She’s ME! (or…I’m HER? Not sure…)” I will tell you my story by way of summary, so as not to bore you.
I spent a great deal of my 20s sleeping. Not that “OMG I feel so refreshed and ready to tackle my day!” kind of sleeping. That “I think I took an entire box of Benadryl and now I can’t keep my eyes open and imma sleep, like, right HERE” kind of sleep. I was constantly inflamed with joint aches and muscle pains and hair loss. When I would wake up from my “naps,” I would literally have to use one arm to move the other arm and my legs to get my body to move. On the plus side, I was losing weight like nobody’s business – I mean…pounds. falling. off. Of course, that was likely because I was crazy in the throes of disordered eating but, you know..details.
Life got worse. My symptoms got worse – like WAY worse. Worse like I didn’t even know existed. For years. And then, one day, my life (at least as I know it) changed forever. I couldn’t tell you when, exactly, that day was…just that it existed. And it existed sometime while I was in law school. My entire body completely freaked out – I mean, like FREAKED out. The primary culprit? My gut. “Good grief!” I thought…what on EARTH is going on in there?
Four years later (seriously – no joke), I finally had what I thought was the answer to my prayers: my doctor, after multiple tests and endoscopy said: “you, my dear, have Celiac disease!” I thought that was the greatest day of my life. Can I fix this by avoiding certain foods? Sure, that kind of sucks, but I’m totally in! Let’s do it!
And it worked…sort of. But I was never actually 100%. That was in 2007 and to this day, I have never been “normal.” After a period of time, some of the non-gut Celiac symptoms subsided. But my gut? It was a hot mess. Constipation. Chronic bloating. Some foods made the symptoms worse, so they were eliminated. Inflammation. Headaches. Depression. Weight roller coaster. Really, just…etc.
I saw doctor after doctor. Smart doctors. Crazy-smart doctors. Mayo Clinic doctors. NYC doctors. Kansas doctors. Denver doctors. Medication after medication for constipation (“Oh, you have slow transit time – we can fix that!”). They did nothing (can I just paint the picture of what it’s like to take a hospital administered laxative after not having pooped for 6 WEEKS and have NOTHING happen other than feeling like a bomb went off in your gut?). Then there was “hey – you have pelvic floor dysfunction! Not to worry – we can fix that!” Countless sessions of physical therapy. Girl, let me tell you…this isn’t like physical therapy for your knee. Ahem.
Then it was “hey – you have SIBO! Not to worry – we can fix that!” Multiple rounds of antibiotics, all to no avail. Pelvic floor trigger point injections…where NO needle should ever, EVER be. Every invasive radiology test known to man. Sitz marker, anal-rectal manometry, defecography, barium-based x-rays, stomach-emptying studies…you get the picture.
Every possible diet: low carb, low FODMAP, no salicylate, more food (feed the bacteria!), less food (dear God, DON’T feed the bacteria!), no: gluten dairy soy nuts eggs legumes artificial sweetener garlic onion rosemary (breathe!).
And still…nothing. I wake up looking like I am 6 months pregnant (also, I’ve had people actually say to me…strangers, even…”congrats – when is your baby due?” You gotta be joking me, dude.). Every single piece of food I put in my mouth sets of a reaction – I can actually feel the bloating happening. It starts in my lower abdomen and gradually moves its way up to the point where even my bra is cutting off my circulation. I gain weight, I lose weight. Every single part of me is constantly inflamed. I’m still chronically constipated. And, just for kicks and giggles, my thyroid now seems to be jumping into the mix.
My current diet consists of plain chicken, carrots, green beans, and bananas. Which I could even tolerate if eating those four foods made me feel better. But they don’t. I still feel like death warmed over every. single. day.
I don’t share this story with you, to which there are still other components that I won’t bother you with, for sympathy. I actually share it with you for thanks. Because in my darkest days, which come somewhat frequently, I read your blog and have some glimmer of hope. That feeling this way ISN’T normal, and that I’m not just imagining these symptoms (my last conversation with my GI was…maybe I’m just crazy? I mean…seriously…am I?!), and that maybe, just maybe, someone, someday, somewhere, will be able to make a proper diagnosis and help me heal. I don’t pray for perfection, or even happy…I truly just pray for peace – physical and mental.
So, on this Thanksgiving eve, I just wanted to say that I am thankful for you…and from a total stranger I just simply say “thank you.” Thanks for giving this Kansas girl a glimmer of hope that peace is possible. Happy Thanksgiving to you and your family!
I’m sharing this message today for the Sunday Reflections because I want you to know that I am constantly getting messages like this, and I want to tell you that if you are where she is at today, know that there is still hope.
One of my favorite posts I ever wrote on hope was Hope from March 31, 2013. It’s short and to the point, but if you’ve never read it, check it out.
Listen, I’m not Tony Robbins. I’m not Jen Hatmaker. And I’m not yet the blog/voice that is able to reach millions.
But I am still here…..writing and sharing very openly and honestly on all parts and pieces of my journey with the hopes that when you read any of the storylines you will feel hope when you need it.
Even if it’s the 24th hour, you should always still have hope because the best might be right around the corner.
If you don’t have time to read these posts daily, but don’t want to miss them, be sure to follow via Bloglovin’ and/or join my personal e-newsletter HERE. I am doing my best to send a once per week email recap of prior week’s posts.
If there is a topic surrounding change that you would love for me to include in this series, please just CONTACT ME.
Writing the words infertility and her miracle bring so much joy and happiness to my soul. This is not my infertility story nor is it my miracle because for me the miracle was her. But I have something inspiring and amazing for you today.
Discover new healthy passions. Revel in new healthy pleasures. Have so much fun getting and being healthy that everyone around you wants to do it, too! Revolutionary Act #98, powered by Experience Life
It has been over a year since I featured someone else’s story here. I used to do this frequently via Your Gutsy Stories, but once I transitioned away from A Gutsy Girl to just me, Sarah Kay Hoffman, I kind of stopped doing them.
But every once in awhile, I “meet” someone and I feel such a deep connection with them and their story that I can’t help but ask, “Would you like to tell your story on my blog?”
And she did.
We had Reid in early 2011 after about a year of fertility test, treatments and procedures. At that time, I said to my husband Jason, “I love being a mom but I am not sure I want to go through the fertility process again.” But as the memories of the fertility process were becoming more distant when Reid was 18 months, I consciously decided that I would go through it again because I LOVED being a mom to Reid and I really wanted to bring another little one into the family, no matter the fertility process. I was sure it would just take some more rounds of medications and IUI to conceive again.
My infertility was completely “unexplained”. I was a seemingly healthy young woman with no underlying medical conditions and my bloodwork always came back in the normal range. “Sometimes this happens,” the doctors said. I didn’t question the doctors and went ahead with the prescribed fertility treatments while continuing to live my life as I always had. I loved working, I loved running, and I always wanted to continue achieving more, whether it was in my career, fitness, family, etc.
So in February 2013, we started doing more rounds of IUI because we had success with that on our 3rd try when we conceived Reid. We took a bit of a break between the first couple of rounds and did 4 unsuccessful ones by September 2013. We then had to take a break from fertility medications for a bit to give my body (and mind) a break and tried another drug January 2014. I was on autopilot at this point in all aspects of life. That drug was a huge failure (no follicles) and so we were advised to do IVF. By this
By this point, we knew this was the next step. I was at that time ok with it because I truly thought I would be a guaranteed success case as I have no underlying medical conditions. I got a call from the clinic to do an IVF round in June 2014. My heart sank as I noted the dates because I had to be at work meetings out of town during some of the testing dates. So, I decided to cancel the first call up – I put my career ahead of family. They said I should be called for the next round, and they did thankfully. This first round was a complete disaster. After taking injections for 6 days, I was tested and had no follicles of any size. The IVF was
The IVF was canceled. It was heartbreaking and I felt responsible for the complete failure of it. I knew in the back of my mind, my work and my desire to do it all was having some sort of impact on my fertility.
It took another month before I was ready to do what had to be done. After some deep soul searching and working with a career coach I gave my notice to my work that I would be leaving. Quitting my job was causing me intense angst (I never quit anything!). I was worried what others would think of me and what I was doing to my blossoming career. As I worked through it with my career coach I came to realize that quitting my job meant I would be “able to sleep for the rest of my life”. I knew deep down that how I was living my life was having an impact on my health. I did not want to do another fertility round with having any what-ifs that were completely in my control.
We did another round shortly after I left my work and we got some follicles! 4 embryos survived in the dish and we put in 2. Still not a great result given my age but they said I basically had the ovaries of an older woman and I was showing signs of premature ovarian failure.
Two weeks later we found out we were not pregnant. We said we were done. The heartache was intense. I said to Jason that I want to be happy with what I have before I even think of putting in the last 2. I felt like I wasn’t living in the present and enjoying all that we had because I kept trying to achieve more.
By Spring 2015 I wanted to try for the last 2 embryos because I felt like I was leaving something on the table by not using the 2 frozen ones. But, in June of 2015, we found out that it was not successful. Doctors told us to stop because I was in premature ovarian failure and doing more rounds would be wasting money and emotions.
Lots of tears followed. I was completely heartbroken and felt I let my family down in a huge way. I always struggled with the “why” of not being able to have another child. “What had I done wrong in the course of life to deserve this,” I would quietly ask myself at night. Jason was incredible throughout this time and always was just the right mix of a realist, kind and caring. As the weeks and months went by we focused on making it the best summer with Reid, and we did.
Knowing we were at the end of the road for fertility treatments I wanted so badly to feel happy and completely at peace with what I had. During these months, I told my coach, “I will likely always mourn plan A, but now that I am working on Plan B, I really want to make the best of Plan B.“
I started getting busy working on Plan B and it felt right as I had made significant lifestyle changes over the course of the last year. I was always checking in to make sure that what I was doing was in line with my values. Life was getting to be good again and I was starting to go to sleep at night with a sense of peace for Plan B.
And then it happened. A little miracle took place at the Newton house and Reid will be a big brother June 2016.
Countless drugs and treatments were not able to do what happened naturally. I can’t help but feel it was meant to be this way. I had learned to slow down and really look at all that I was doing with my life and measured that against my values.
I value working and therefore still do…just not as much as I did before. I value family and being a mom…and so I make sure I now have ample time for it. I value being fit and working out…but now do it for a much healthier reason than before. I value my friendships and I have taken more time for those, and on and on.
Take good care of you from the inside out,
p.s. I never promise to feature all stories on my blog, but if you have a story you’d love for me to consider, contact me!
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