The other night at community group I was sharing a big chair with my dear friend and I felt a level of comfort that I haven’t felt with a friend in so long. I was sitting close to this woman that had been a stranger to me just a year ago and across the room was another who I had previously thought of as my husbands friends wife and now it feels weird to go more than a few hours without some form of communication with her. The room was full of people I’ve laughed and cried with and have just done life with for the last year and a half. Some of them were even wearing pajamas just so I wouldn’t feel weird being the only one in them (my abdomen is so distended and sensitive that even the tiniest piece of elastic in the waistband of sweats is unbearable). We’ve become a family. Not because of where we live or blood in our veins or any common interests but because God designed us to crave relationships with other believers and he gifted us with each other to make it through the hard days and to celebrate the good days!
It regularly reminds me of Exodus when the Israelites were in a battle and as long as Moses prayed over it with his arms raised they would continue to win but his arms grew heavy and his body tired so his friends Aaron and Hur helped him sit on a rock and helped him hold his arms up. They couldn’t take away this responsibility that God gave to Moses but they could help him through it and physically bear some of the burden.
The other night as we were wrapping up and people were sharing prayer requests my friend in the chair with me kept nudging me to ask for prayer. I wanted to but some insecurities still linger that people are just so over hearing about my medical woes and we were running short on time. She could tell I was apprehensive so she asked on my behalf.
Today I’ve been feeling nudges from God to write a blog about everything that’s been going on... I’ve been waiting for Ashley to do it for me but it seems maybe God wants me to handle this one? Ha. So here I am.
It’s been a while! So much has happened!
Last I wrote I was having continued abdominal/ flank/ stoma pain, my stoma had inverted, I was having lots of blood in my urine, and continuous kidney infections. They also thought I had kidney stones but we never really found concrete evidence one way or another.
Fast forward to September when I went in for the doctors to scope my conduit because they thought maybe the mesh from my hernia repair was jabbing into the piece of ileum. I remember waking up from anesthesia and heard my doctor on the phone saying “it was just so weird!”
A week later he called me and explained that my whole conduit looked strange. It was all stretched out, red, inflamed and irritated so he took some biopsies and they came back full of these cells called Eosinophil Cells. He also told me he looked back at the pathology of my bladder after it was removed and it also was full of the same cells!
Since the conduit is made of small intestines he assumed that there would be more of these cells in my gi tract so he sent me to the chief of GI for all of UW hospitals. He turned out to be an amazing guy who was perplexed and fascinated by me! (I’m sure you understand.) He did two colonoscopies and biopsies but they were all negative for the cells. So that means the cells are only showing up in places where the urine is touching.
These cells are a form of white blood cell that are an immune response to either an allergy or a parasite. They create inflammation, bleeding, pain, and mucus.
For instance, some one who’s allergic to pollen would have these cells in their throat during spring time and it would be sore and they would be coughing up lots of mucus.
However. They’ve tested me for allergies and other than a slight allergy to shrimp, I’m clear! They also tested me for every crazy parasite they could think of- negative.
Then two days before Christmas I woke up doubled over in pain and with more blood than urine in my bag. I rode it out through Christmas but on the 26th my dear friend (who I shared a chair with a couple days ago) drove me to the emergency room. I was sure I had a kidney infection but my blood and urine tests came back completely clear. They admitted me because of the severity of the pain and lack of direction and despite their best efforts they couldn’t figure it out.
The GI doctor came by while I was in the hospital and we chatted for over an hour and he decided that even though we don’t know why these cells are there, the best broad spectrum treatment is heavy steroids. He told me it would either make the symptoms worse, better or they’d stay the same but I would definitely have some unfortunate side effects from the prednisone.
That was a month ago. I’m still taking morphine just to be able to breathe normally, my urine is various shades of blood (from almost black to bright pink to rusty orange), I’ve had intermittent fevers, my heart rate is regularly in the 100s and there is soo much mucus and dare I say chunks in my urine that sometimes form a (sorry in advance) crust over my stoma. Plus I am agitated and anxious, swollen, starving all the time and having a hard time sleeping at night all thanks to the steroids.
I went to the ER two more times since being discharged from the hospital but as soon as they read that the chiefs of urology and gastroenterology have no idea what’s going on they send me on my way. I don’t expect them to have answers to these major questions but it feels insane to be laying in bed at home while all these crazy infection symptoms are raging but every time the results come back clean.
My amazing primary care doctor told me that these cells often present as an infection so it’s not surprising we’ve been confused for so long but it’s still so scary and frustrating!
Now I’m waiting for my procedure next week where they will go back into the stoma and do more biopsies and see if the prednisone is helping at all... even though it kind of feels like a waste of time because my symptoms are still raging!
The worst part of all of this is the thought that this is my body’s crazy reaction to my own urine. None of my doctors have ever heard of anything like that but it makes sense! The crushing question that brings is, if they’d known that before could they have saved my bladder?? Maybe no matter what they use as a system to get my urine out of body it will react the same way.
There was some talk of creating tiny organs out of my cells (any Greys Anatomy fans in the house?!) and pouring my urine on them and seeing how they react. That’s pretty cool. I mean if I have to be miserable I might as well be fascinating!
I’ve always felt very fortunate to live in the suburbs of Seattle because I’ve had access to some amazing doctors and hospitals but having the top of the top doctors scratching their heads feels so discouraging. So when my friend suggested I apply to be seen at the Mayo Clinic it at least piqued my interested but it felt impossible that I could get accepted and I had no idea how financially or time wise we could make it work.
After a long, hard weekend full of pain, narcotics to ease the pain and ptsd-like panic about having a new form of chronic pain... I filled out the form online. Within a week I had an appointment scheduled for February 18 to be seen at the urology clinic in Phoenix. They told me to plan on an opened ended visit... my first day down there I will see the urologist and he will make a plan about what other specialists he wants me to see and what tests to do and they will make a little team and try to figure me out once and for all!
I was immediately overwhelmed with making the travel and accommodation plans as well as care for Titus (my 7 year old). Not to mention just worrying about how hard it will be to be away from him for an unknown amount of time.
The next day my sweet friends had created a gofundme page and family and friends have shown up in ways I couldn’t have even hoped for! I have always felt so supported through everything I’ve gone through but to have people sharing the page, giving money, covering major expenses, offering to help with Titus, and just rallying around us as we prepare for this potentially life changing trip has been just amazing.
I have no words. Truly. I can’t think of the right way to express my thanks to these friends, family and even strangers that are easing any fear that this isn’t what I’m suppose to be doing and literally making this trip possible.
I’m overwhelmed and humbled but mainly just painfully thankful.
On another note... I’m starting to wonder if I ever even had interstitial cystitis! I wonder if it was these cells in my bladder wrecking havoc all along! I feel like it could be huge for the IC community to at least have another road to explore. If you’re reading this and have an upcoming cystoscopy maybe you could ask for a biopsy? I obviously don’t know anything yet but it just makes me wonder if it’s really our bladders or is it the urine?? I’ll definitely continue to share my journey as they explore these unknown avenues!
Anyway. I just wanted to update you all on what’s going on, ask for prayer, and just thank everyone who is supporting yet another leg of my medical journey.
Although my stress about the logistics of the trip are easing, the fear of getting my hopes up that we will finally get answers only to be completely disappointed once again is very real. I spend all day sloshing back and forth between total optimism, cautious encouragement, and complete sureness that they won’t be able to do anything for me.
I’m also still just so dang miserable, emotionally drained, over being cooped up and anxious about everything I’m missing out on in the meantime...
So prayers are my number one request and encouragement is a close second!
Thank you again for coming along side my family and me. We are so very blessed, even in the darkest days, to be surrounded by people who help hold our arms high so that we can continue to be victorious.
