Sh!t Storm ;-)
Last updated: October 2023
My daughter was diagnosed with ulcerative colitis (UC) when she was 16. I still don't know why she tried to keep it from me. Her teachers and counselors would say she stayed in the bathroom most of the time in school, but they would offer no help or explanation either. She just wouldn't talk about it. They had no idea.
Finally getting the treatment she needs
I finally forced her to go to the doctor, and they sent her to a specialist in the next city over. Two years of Remicade didn't keep her in remission, and the doctor was uncommunicative about the reasons and other treatment options. I had very little time to do research and ask questions. I had two other kids at home and a full-time job, by myself.
My daughter's doctor advocated for her to have her large intestines removed, and said there was a 50% chance of a cure. I hated seeing my daughter in pain, and this was the chance to fix it that I thought she sorely needed. I hoped she would heal up, be okay, and have a life.
When things started to go south
She had her removal and a J-pouch made on the same day in one operation. She went off her meds and she spoke no more about it. Sometime later, she developed pouchitis and was diagnosed with Crohn's disease. By this time, she was on her own and seeing a different gastroenterologist.
I was floored. The good life I had hoped for her just turned south. She spiraled into depression, drugs, the lot, and got herself straight again. She's currently on another infusion and doing well.
Last month she got a notice in the mail stating she needed to re-qualify for her state medicaid program. She had qualified under the COVID-19 expansion, and they were reviewing eligibility. She now makes too much, but doesn't have a job that offers insurance.
Our state didn't expand their medicaid through the Affordable Healthcare Act, so she's shit out of luck there and having to shop the marketplace. All I can do is shake my head, because while she can work a full time job, it has to be able to accommodate her needs, and few jobs work for her--massive fatigue being one of the reasons.
I still feel guilty about the decisions I had to make for her when she was still a minor.
Turns out, it's genetic
And through all of this, I was recently diagnosed with UC earlier this year. I had a massive flare--bloody mucus, explosive diarrhea, pain up the wazoo! I couldn't eat, but was so hungry...ugh! I lost about 40 lbs in less than three months while we waited for the steroids to work, for the Humira to kick in, and for the mesalamine to sooth my insides.
I had to change steroids from prednisone to budesonide. Prednisone darn near killed me. My liver took a tank, then my kidneys took a tank, and I spent some time in the hospital to sort each one out.
Iron infusions, potassium infusions, liquid nutrition through the IV, liquid steroids. Yeah. It's a good thing my veins are still strong.
Missing my medication
All this time, my employer kept me on leave of absence and paid my insurance premiums even though I was a new employee and didn't qualify for FMLA. I only had to fight my insurance once when my doctor upped my Humira dose to once a week and won. That was a month ago.
But this month, someone there misfiled or misplaced my review, so when it came time to refill my meds, they wouldn't pay for it! What's worse is that the specialty pharmacy they insist I use wouldn't communicate with them to find out why. That fell squarely to me. On the day my dose was due!!!
They can fix it, but I won't be able to order my meds until probably midweek next week, and I'm back to work now. I'm not certain how missing a week's dose will impact my job performance, but I'm optimistic that it won't be too bad. I hope. I'm just glad I work with a great team. I guess we will see.
Support is key
In all of this sh!t storm I have found the absolute value of having friends, family and employers who never waver in their commitments to being excellent human beings. These people are the kind to have when sh!t hits the fan. Seek them out. I am blessed. I wish my daughter had these things too.
Do you have an IBD story? Click the button below to share with our community!
Does living with IBD impact you financially?