Newly diagnosed, trying to stay afloat with a big hole in my boat..

By abrattell

4 min read

I started getting sick last summer. I have been hospitalized, poked, prodded and lit up like a Christmas tree with radiological diagnostic testing up the wazoo. I started budesonide last fall after my double dip scope while hospitalized for 4 days. It seemed to help. I improved, ran out of my script, tried to refill it, the pharmacy was told by my GI office I needed a follow up to have the refill but it was December and my appointment wasn't until mid January. I got worse, had my appointment and was told I should have been on it the whole time and should have called because that's an at least 3 month med course but the hospital didn't say that on discharge. They also didn't tell me they felt they knew what it was.

My diagnosis

All I knew was that according to the doctor who performed my endoscopy and colonoscopy it wasn't that bad but I had ulceration in the terminal ileum. He recommended a pill cam study to explore the area more closely. So, I got worse, waited for my appointment in January. There I was told my biopsies were suspicious for Crohn's from my scopes, but they wanted the MRI to verify and a pillcam study. I had my MRI which showed Crohn's in my small intestines with stricture. Explains why my symptoms were nausea, vomiting, and weight loss. Fasting is when I feel best most days.

After my MRI confirmed, I waited for Humira approval and again got sicker and went back to the emergency room 2x. Finally got approved, then dealt with a dumb specialty pharmacy that couldn't get their stuff together. I had to go out on short term disability from work. Finally started Humira last week of February. Had great effects at first, then I lost my insurance. Had to switch from a specialty pharmacy back to the manufacturer since I can't afford these meds without insurance. I was then 2 weeks late getting my first dose, waiting for delivery of my med. Finally got it and it just didn't feel the same as it had before when I gave myself the shots. I got changed to weekly injections, and I'd feel ok for a few days of the week, then get sick again by Wednesday after injection on Saturday.

My hair started falling out something fierce.

Not sure if it was from my mercaptopurine or Humira or both or the malnutrition too as I'm still losing it. I started getting stomach spasms and more nausea a couple weeks ago. My provider had labs drawn by prometheus in my home just prior to that, and I found out May 19th my body was building antibodies against the Humira despite the mercaptopurine. She consulted with the doctor who did my scope and it was decided since I was rejecting those meds, I would stop them and try Entyvio as a last ditch effort before surgery.

I had my first dose Monday of this week. Feel like I'm in a full flare again as I can barely tolerate sips of clears and small bites of purees. So fasting is again my friend. I don't think the last dose of Humira I had on Saturday (just a couple days before my first Entyvio dose) did anything at all as I'm vomiting mucous, dry heaving, broken blood vessels around my eyes from throwing up again. I had bad headaches and joint pain my first two days after infusion of Entyvio but I had insane pain on Humira starting. I go for my 2nd infusion June 16th.

I'm waiting to hear if my short term disability leave as a hemodialysis nurse will be extended or if I'll be losing a job I absolutely love. I'm not sleeping well. My anxiety seems to have skyrocketed with starting meds during covid in March. Worrying about finances, immunosuppression, and struggling to balance being extremely sick at home, changing body image, and doing distance learning with my two kids one of which has epilepsy and special education needs.

Here I sit in limbo

Waiting to feel better, waiting for decisions about my career to be made by others because of my diminished health which I can't help. My kids miss the mom that used to do everything. The mom training in reality Martial arts halfway to blackbelt, being everywhere, making life happy and super fun despite working full time and volunteering in the community. I'm not the quarantine mom I had planned. With art kits purchased from a local ceramic/canvas painting place in town just taking up space on my counter in my kitchen and dining room. My husband is trying so hard to work full time and help me take care of the house.. I'm so exhausted after anything I do I have to go lay down. Taking a shower takes a lot out of me, and shaving my legs is an act of congress since bending causes severe nausea and pain.

Living with an Invisible Illness

I'm praying entyvio works, I'm scared of surgery and having a potential new source of inflammation where it's resected (if I do have to do it in the future) and can't stand my new norm of not being able to do anything without being sick, tired, or not able to do what I want at all. Why do people you're assume you're feeling better because you have a brief moment of laughter or smiling? Yay for invisible, chronic diseases. I at least have an answer after years of thinking I just had a sensitive stomach, bad anxiety and terrible luck, that I just needed to "calm down" because "it's in my head and I'm making myself sick..". Besides, "I don't look sick" according to friends and family.

I was misdiagnosed for years because I didn't present like a typical Crohn's patient, now it's so bad my life is turned upside down. Trying to stay positive and chill, it's just so hard with so much going on personally and for everyone in the world. There's a light at the end of the tunnel its just a little further away than expected, and I'm trying to stay afloat with a big hole in my boat..

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JessicaH Member
Hi <inline-mention user-id="2224762" username="abrattell"/> , we really appreciate you sharing part of your journey with us. It sounds like through it all you have done the absolute best you can, which is all any of us can do. I can certainly understand the frustrations associated with having a moment of laughter/happiness being confused for being completely good and like the chronic condition is no more. I hope you find this community gets what you are going through and we are here for you. <3 Please reach out any time and stay strong! Sending many positive thoughts and hugs your way. Kindly, Jessica, <a href='https://inflammatoryboweldisease.net' target='_blank'>InflammatoryBowelDisease.net</a> Team Member
Amanda Osowski Moderator & Contributor
<inline-mention user-id="2224762" username="abrattell"/> - thank you so much for sharing your story. I related to what you wrote, especially in the last few paragraphs. I also was told it was all in my head, and was misdiagnosed for years. I think you have a good mindset and are doing the best you can. I had some success on Entyvio (ended up switching to Remicade after being diagnosed with Rheumatoid Arthritis and needing a systemic medication), so I'm optimistic that you will find better days on it too. Sending warm wishes! Amanda (Inflammatory Bowel Disease Team Member)
Sahara Fleetwood-Beresford Moderator & Contributor
I know so many people that have had similar situations in terms of diagnosis <inline-mention user-id="2224762" username="abrattell"/> , and that makes me so sad! I'm so sorry you're going through this, especially right now with all of the additional stress of being in a pandemic! I hope you know you are not alone in this. So many of us have experienced the frustration of treatments not helping and feeling like we're so exhausted, we're failing at life! I know I certainly have. I am pleased to hear you have a supportive husband at least. Fingers crossed you will begin to have a little relief real soon! - Sahara (team member)
thedancingcrohnie Moderator & Contributor
<inline-mention user-id="2224762" username="abrattell"/> , My heart goes out to you. You have gone through so much. I hope Entyvio has been working for you. Are you still at your same job? I hope that sorted itself out as well. CD is hard and it can really throw your life into chaos at points. But don't lose hope. It only takes the one medication or treatment plan to turn things around. I am rooting for you. And please let us know if there is anything we can do to offer support. Big hugs to you, Elizabeth (Team Member)
Matt Nagin Moderator
There is a hole in your boat but the boat is fortunately still at sea. Hopefully, it can be patched up and you can see better days, smoother sailings. I'm sorry for all you've endured. Crohn's disease can be very trying. I've had it over thirty years and have had three surgeries. You're right to want to avoid surgery if you can. Not going to lie either. This illness is not easy. It is a real adjustment. And friends or family may not understand since they can't see it. Even recently, my father, who has generally become supportive, told me he thought "I was obsessed with illness." This isn't true. I've just had my share of obstacles so it comes across that way. All I try to do is be proactive and limit the negative outcomes, since without that I'm done for. Anyway, sorry about the exhaustion and loss of hair and hope you can get back to the martial arts soon. Take care of yourself. Be well...as you can be! Best, --Matt (Team Member)