In honor of Crohn’s and Colitis awareness week I thought I would finally share an update on my health journey.
O how high would I climb mountains
If the mountains were where You hide
O how far I’d scale the valleys
If You graced the other side
O how long have I chased rivers
From lowly seas to where they rise
Against the rush of grace descending
From the source of its supply
In the highlands and the heartache
You’re neither more or less inclined
I would search and stop at nothing
You’re just not that hard to find
So I will praise You on the mountain
And I will praise You when the mountain’s in my way
You’re the summit where my feet are
So I will praise You in the valleys all the same
No less God within the shadows
No less faithful when the night leads me astray
You’re the heaven where my heart is
In the highlands and the heartache all the same
O how far beneath Your glory
Does Your kindness extend the path
From where Your feet rest on the sunrise
To where You sweep the sinner’s past
O how fast would You come running
If just to shadow me through the night
Trace my steps through all my failure
And walk me out the other side
For who could dare ascend that mountain
That valleyed hill called Calvary
But for the One I call Good Shepherd
Who like a lamb was slain for me
Whatever I walk through
Wherever I am
Your Name can move mountains
Wherever I stand
And if ever I walk through
The valley of death
I’ll sing through the shadows
My song of ascent
From the gravest of all valleys
Come the pastures we call grace
A mighty river flowing upwards
From a deep but empty grave
We sang this song in church last week and while I’ve heard it before, sung it before, and love it, it hit a little differently for Joe and I both I think, since I’ve been at church and actually seen those lyrics on the screen things have changed quite a bit...that was the first time we’d been back to church since corona virus hit and man did we need it.
Obviously we’re all in a little bit of a different mental state than we were 9 months ago, I didn’t think it really hit me until aalll the health things started piling up and with that added on top it’s just a lot.
We went through a difficult period of my GI doctors nurse not relaying messages this summer, she’s no longer there and his new nurse is great thankfully!
We had known for quite some time that the stelara (biologic for crohns) wasn’t working but between covid, my Drs nurse, etc. it wasn’t till July that we kind of started having things change, I had a teledoc (phone) apt with my dr on my birthday, anyone who knows me knows I take my birthday very seriously so that was a bit of a dampening🤷♀️😂.
He prescribed a medication for Cdif ( recurring thanks to my lowered amine system and anytime I have to be on antibiotics) to clear that up before he was willing to decide where to go with my medications, after finally finding a pharmacy that had the medication reasonably priced I started that and when things didn’t change when it cleared up my dr started me on entyvio (another Crohn’s biologic that is in the form of infusions).
I just finished my 3rd loading dosage last week and now I’ll go to every 8 weeks, it takes awhile for it to work so honestly that part has been hard, I’m sure if I were honest with my dr about how I’m feeling he would prescribe me prednisone to help with the symptoms until the entyvio starts working but...I HATE prednisone so I’m trying to hold out as long as possible...😬
Amongst all of this I’ve also had an apt with my liver specialist at university of Iowa and had an mri, labs, etc. and was diagnosed with primary sclerosis colongitis, which is a form of an auto immune disease in the liver/bile ducts.
After that diagnosis and my liver specialist wanting to me to see a dr that specializes in bile ducts and being told I will be high risk for liver and pancreatic cancer (I’ve been assured I don’t have any tumors right now) it really hit me hard, my grandma whom I was extremely close with passed away from pancreatic cancer and her cousin and brother passed away from it as well so I’ve already known I was at risk of it because of family history.
My liver specialist put me on a new medication that is supposed to slow down the progression of the liver disease, so I am thankful for that.
Because it’s been over 2 years and they haven’t been able to put me into remission for the Crohn’s my GI dr is referring me to a Crohn’s specialist at university of Iowa that sadly doesn’t have any openings until February:/, soo we wait...I will still continue seeing my GI dr there in Des Moines but he feels we need a second opinion and I trust his judgement.
After having soo many emotional breakdowns. Picture basically every time I’ve had to talk to someone from Iowa City because thanks to covid Joe isn’t allowed to go into an appointments with me and honestly my anxiety and everything has come to be so much with all of these appointments I need his emotional support being at them, I’ve started crying each time they tell me he can’t be there, I feel bad for the nurses I’ve had to talk to😬.
I was going to cancel the appointment with the bile duct specialist I saw last week until my liver specialist stressed to me he was concerned if I waited until Joe could come in with me that things could progress and worsen, Joe felt like I needed to go so he sat down in the parking garage and I was able to call him and mom and have them on speaker phone to hear what the dr said.
I know we’re not the only ones going through this but man it’s hard...😔.
The next step is for the new bile duct specialist to do a procedure called ERCP don’t has me what it stands for because I have no idea🤪.
Basically what he’s going to do is go in and do brushing (scrapings of my ducts to get a better idea of what’s going on), remove the stones that are in my liver (NOT my gallbladder...I had someone try and tell me that’s what he was talking about and it’s not😬), He may have to do a balloon procedure to open up my ducts in the spots that are narrowed, if he does that I’ll have to stay overnight for observation because they’ll have to do an incision, He may have to put a stint in (a tube) that they’ll monitor every couple months but we won’t know about either of those until he gets in there to do the procedure.
I think the most frustrating part about this is the unknown, I’m really not sure where we go after he does the procedure other than them just saying they’ll have to monitor things every couple months🤪.
And naturally...the nurse told me that Joe can’t come in to the hospital for the procedure, I have to go over the morning before to have the covid test because they only allow them to do the test...and then after the procedure if I have to stay the night he can come in for visiting hours from 1-3 and that’s it...so we’ll have to be over there for 2 full days (maybe 3 depending on if I have to stay overnight) and I’ll have to be alone pretty much the whole time. Again I realize there are people that have it worse and I really understand that but he’s like my security blanket🤪.
Joe feels I need to have it as soon as possible but I’m honestly torn if I want to wait a few more months and see if the hospitals open up more so that he can go in or do it in January like they would like.
I told Joe last week I think I feel like most people do when they’re first diagnosed with Crohn’s, I’ve ready they normally go through a mourning period and just a time where they have to process everything. when I was diagnosed I was just so relieved and thankful to finally know what was wrong with me.
This time around with everything going on it’s just been a literal emotional roller coaster🤪.
I truly apologize...normally when I write updates for y’all I am upbeat and have a positive outlook but...you know when they say God doesn’t give you more than you can handle, I think he thinks we can handle a lot more than we can!🤪.
It’s been such a strain between Joe taking off work, the added cost of medications, etc. on top of worrying about what’s going on with my health.
This time around I’m just so exhausted from appointment after appointment for all of the things and the unknown is just a lot to handle.
(In the midst of this, I’m also going to physical therapy once a week, had an MRI and found that I have a bulged disk and something else I can’t remember what it’s called so I’ll start seeing a pain management dr next week so between him and the physical therapist they should be able to figure it out, it shouldn’t require surgery, just maybe some trigger point injections, etc. I’ll find out next week).
I still have 100% faith that God has a plan for me even though I have no clue what it is😂. But honestly I’ve been asking him a lot of why me, I know that someday I will look back and see that that this all has happened for a reason and I pray that I will be able to help someone else going through something similar.
I would so appreciate your prayers for strength and that the doctors can figure out whats going on and get a good plan together.
If you’ve made it to the end of this post, thank you for taking the time out of your day!❤️❤️
We are working on a shirt design similar to the one Joe did last year as an autoimmune disease awareness/fundraiser shirt to help pay for these added dr visits, stays, medications, etc. if you would be interested in one please let me know! They will be $25.
It will be something somewhat similar to this only a black shirt with purple ink (this will be a screen printed shirt).
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