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Life continues on (Part 2 of my story)

Read Part 1 of my story here

So, we left off at the official diagnoses and what turned out to be the beginning of the end for my dream job. Let’s pick up from the diagnosis, as there was more to that fateful appointment. The gastroenterologist explained her desired treatment plan and went on to discuss some of my options. She let me know that surgery could be in my future depending on how the inflammation responded to treatment. We ended this appointment with not only another round of steroids but also a prescription for a biologic, Humira.

Let’s skip ahead about 5 months to May. By this time, I have been on Humira since the third week of December, making sure to use the epipen injections every 2 weeks as prescribed. I’ve been on/off steroids nearly the entire time as well, though the inflammation isn’t getting any better. If anything, it was worse, much worse, to the point of being admitted to the hospital again. This admission has me nervous and worried. I thought the pain before had pushed me to my limits. The pain this time made all the other times seem like I banged my knee on a table. They ran me through the gauntlet of tests and scans yet again. My heart dropped when I saw the look on the doctor’s face when he came to give me the results.

Not only had the inflammation had become worse, I had also built up a resistance to the Humira and surgery was imminent. My diagnosis had been updated to “Crohn’s Disease with complication/fistula/stricture“. It was a “when will the surgery would be done” scenario. Would it be able to wait a little while so that my body could prepare for it or complete it now with increased risks? Through higher doses of prednisone and other medications it was the former, we were able to postpone and prepare properly. The surgeon swung by my room to chat with me about the surgery and how he planned on performing it. I was told about the 2 possible ways the surgery could be performed as well as the respective recovery times. He addressed my concerns and fears and worked with scheduling to set up my appointment which was set for Friday of the first week of July. The next day they discharged me from the hospital with everything I would need to prepare for it.

I returned to work and advised my supervisor of the recent events as well as the upcoming surgery. I then had to explain it all again to the project and account managers. The four of us sat down in a meeting room and discussed it all. I was open about all but the most intimate details, to include what my potential recovery times were. They agreed to provide up to 8 weeks off for recovery.

Fast forward a little bit to the last week of May. I receive a phone call from the surgeon’s office stating they had a slot open up for the following week, first of the month. I’m thinking “Great! Let’s get this over with a month early!” So I talk to my supervisor as well as the project and account managers about it. We all agree that it would be beneficial to have the surgery done early. Called the surgeon’s office back immediately and confirmed the appointment change. I was given the day off for both Thursday and Friday so that I could prep the day before and of course go to the surgery.

The surgery itself went better than expected according to my surgeon. He was able to perform a laparoscopic surgery and said I was looking at a minimum of four weeks for recovery but no more than eight. Great! I spend 4 weeks at home recovering and attend my follow-up with the surgeon. He wants me to take another 4 weeks off from work. Unfortunately I’m not getting paid while I am off from work and my accounts are on fumes. He agreed I could return to work the following week as long as I abide by some conditions. Work once again agrees to work with me and I return to work after the holiday week since the place had shut down for maintenance. Five weeks after surgery I’m back to work with restrictions. Everything was going fine until the Friday. We’re back at the hospital. This time its due to c-diff, which was from a combination of the antibiotics administered for the surgery and a bug going around at work. The hospital admitted me for a week and it was during this week the account manager calls my cell phone repeatedly. I answer the phone each time and every time I am told the same thing. She tells me that I agreed to work 40 hours a week when I took the job. Yes, I did. She also tells me that if I am unable to consistently put in those 40 hours a week I should look for employment somewhere else.

Yeah. A complete 180 from before. Every conversation with this person was the same; “Yes, we can work with you and make accommodations” followed by “You need to schedule your appointments earlier or later in the day,” “You need to come into work every day or maybe work somewhere else,” “We don’t have to make that accomodation.” This went on for months while my gastroenterologist made the arrangements to switch me to another biologic. She also balanced medications, and overall did her best to ensure the inflammation did not return.

August was the start of yet another biologic, this one requiring a visit to an infusion center every 8 weeks. For a few months things seemed to be improving however it starts to decline 2 weeks before the next infusion. A quick trip to the GI and a few tests later reveals that my body is “using up” the medication faster than expected. Thankfully I do not appear to be building an immunity but it does mean more frequent infusions.

This lead to more pressure from the project and account managers as they did not like all the time off that was needed. More “meetings” to tell me that I need to put in 40 hours each week. How I need to change my appointments so that I can drive an hour into work, put in a few hours then drive an hour to my appointments. The alternative was to have my appointments in the morning and then go into work. It didn’t matter to them that the appointments could last up to 5 hours. They didn’t care that running between doctors offices and labs usually leaves me both mentally and physically exhausted.

Once again this has become long winded so let’s take another break and pick this up again later. Thanks again for reading.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mike S. author
    4 months ago

    Once again thank you both for the supportive words. It really would take someone walking a mile in our shoes to understand what we go through every day.

    Now that things have been (or at least seem to be) improving I’ve been able to look back on all of this and smile. Like others who struggle with IBD, whether its Crohn’s or UC, I persevered through this “chapter” and continue to move forward.

  • Julie Marie Palumbo moderator
    5 months ago

    Thank you for being so open about your journey, Mike.

    One truly has to walk a mile in our shoes to know what we experience on a daily basis, but for those who don’t, you paint a very real picture as to what it is like to live with Crohn’s, its complications, and the impact it has on our lives both professionally and personally. Thank you for sharing!

    –Julie (Team Member)

  • thedancingcrohnie moderator
    5 months ago

    Mike, reading your story really resonates with me. I had a similar journey and I just want you to know that you’re not alone. Reading your story makes me remember the intense struggles with balancing work and IBD. We all go through so much but man are we strong. Rooting for you, always.

    Always dancing,
    Elizabeth (team member)

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