Tuesday, May 14, 2013

My Diagnosis Story, Part IV: Recovery...and Acception

This is the final installment of the 4-part story of my diagnosis of Crohn’s disease in the spring of 2005. Links to the preceding parts can be found here: Part I, Part II, and Part III.

Going home was a major first step in recovering from surgery. It was an exciting, yet scary prospect. I was finally able to go home to familiar surroundings where I could sleep through the night without being awakened by the noises of a hospital or vitals checks. But the safety net of having doctors and nurses around to help me navigate through this new world would be gone.

Before I left the hospital, there were many questions. Would I feel better after my surgery? (Yes.) When? (It could take up to 6 weeks.) What if the medications don’t work and my disease flares up again? (We’ll try different doses, or different medications.) Could I have children? (Yes, but I may have trouble conceiving due to abdominal inflammation and scar tissue.) Could our children inherit Crohn’s? (There is approximately a 5% chance.)

I never did ask one scary question that was on my mind: could I die? I kept asking the other questions, and figured that if death were an issue, the doctors would tell me. In my own research, I found the answer was: Crohn’s itself does not kill, but its complications can. If the disease is managed well and kept under control, patients can live a fulfilling life.

My Mom made the 4-hour drive to bring me home from the hospital and stay with us for a while. On the day I came home, Chris was busy fulfilling his duties as Best Man for one of his friends, and had a round of golf and bachelor party festivities to attend. I was glad for him; he had been through the ringer in the past few months, too, and deserved to go out and have fun. I, on the other hand, would be missing the bride's bachelorette party.

The first thing I did upon arriving home was to go to our bedroom and find my wedding ring. I could not wear jewelry at the hospital because of some of my tests and the surgery, so Chris had brought it home, and I missed wearing it. It was the only piece of jewelry I usually wore, and was a symbol not only of our love and marriage, but our “normal” life – the life I yearned to return to. As I came out of the bedroom, I nearly fainted again after going up a flight of stairs and being on my feet longer than I was accustomed to. Mom helped me sit down while, of course, gently scolding me (isn’t that what mothers do?  Thanks Mom - I love you).


I spent two weeks recovering at home before returning to work. Slowly, I was able to expand my diet. I cared for my incisions and figured out my medications (right out of the hospital, I was taking around 20 or so pills a day). I also learned how to give myself B-12 injections once a month, as the part of my body that absorbed that nutrient – my ileum – was now gone.

My main incision, 13 days post-op. Because my surgery was done laparoscopically,
my incision was small, compared to a regular resection surgery. I also had two
other small incisions from the scopes.
In the short term, I needed my incision to heal. My body also needed to heal – it had been very ill. Clothes hung on me, as I’d lost weight not only because of the malnourishment, but due to muscle loss from lack of activity. For the long term, needed to heal emotionally, too. I had been sick for a long time, but having surgery would not cure me. I was on the right path of being able to manage my symptoms, but had to adjust to the fact that life would not continue exactly as it had.

I had to become accustomed to living with a serious disease that came with medications, risk factors, and no cure. This new journey was forever, and extended far beyond my incision healing. I would have to adapt to the fact that through no fault of my own, my body had betrayed me, and no one could tell me why. This would take time, and I would grieve my health.

My life had been interrupted, but it was my goal to move forward and continue on as normally as I could, and so I found tasks that fit the bill. I had homework and exams to make up, as I missed the end of the semester at school. I sat at the kitchen table and wrote thank-you notes to the people who had visited or sent flowers or care packages. I also read and researched Crohn’s disease as much as possible. As long as I was armed with knowledge, I didn’t feel so powerless.

I do actually have fond memories of those recovery days. My husband and mother were wonderful support and took good care of me. The weather was sunny and beautiful. The house we lived in at the time was off of a pond, and in the spring, the frogs would sing at night. That memory is still a happy place for me – sitting on the deck, drinking herbal tea and listening to the frogs in the dark. I felt safe and protected from the reality of going back to work, school, and the life that was looming.

Forging a New Relationship with Food

To help manage my symptoms, I would need to figure out what foods my system could tolerate. I had met with a nutritionist while in the hospital, but she could provide little advice on what diet might work for me (not all nutritionists have so little advice). It’s not the same for every IBD patient, and beyond some of the standard advice – avoid greasy foods and alcohol; eat a low-residue diet when symptoms flare up – a lot of figuring it out would be through trial and error.

Navigating diet advice was, and continues to be, a dizzying prospect. For example:

Avoid fried foods. Many IBD patients can’t tolerate dairy, so avoid dairy. Unless, of course you can tolerate it. But dairy is an inflammatory food, so if you can ingest any, be very selective about which products you eat. If Crohn’s symptoms are acting up, eat a low residue diet (no raw veggies, nuts, seeds, etc.), consisting of things like white bread, rice, pasta, creamy peanut butter, and bananas. But, alter that to eliminate bread and pasta if you are also celiac (allergic to gluten), as some IBD patients are. However, even if you don’t have a gluten sensitivity, avoiding gluten may help your symptoms (but it may not). There’s the paleo diet, the specific carbohydrate diet (SCD), and the raw diet, among others. But be careful about certain raw foods if your immune system is compromised. Potatoes are easy to digest, but they are starchy and illegal under the SCD, if you’re following that diet. Make sure you are getting plenty of vitamin D. Getting nutrition from your food is better than from pills, but if your intestines are ulcerated and/or inflamed it’s hard to get it from food, so take vitamins to supplement. Avoid eating too much sugar, or if you’re a saint, don’t eat sugar at all. Honey is a good substitute. Avoid alcohol. Kombucha works well for some people, but is an acquired taste. Probiotics are good to help balance the bacteria in the gut. Ginger and cinnamon are anti-inflammatory foods and good for digestion. Avoid carrageenan, and consider eating organic and avoiding GMOs. Etc., etc.

Are you still with me?  Yikes, right?

I tread carefully, using a food diary, trial and error, books, and Dr. Google to guide me. I found that bananas, oatmeal, and hot tea are good at almost any time. Coffee, beer, or liquor are not. Orange Juice or eggs I cannot tolerate in the morning, but can later in the day. Pineapple will set off a flare. How I tolerate other foods is dependent upon my symptoms. When hit by a flare, I often resort to a diet of only liquids to rein it in, and then gradually add food back. On occasion, I throw caution to the wind, but usually pay for it. Eight years later, I’m still learning.

The Bill Collector

Medical bills from my first hospital stay started to arrive while I was still at home, and the bills from my second stay would come soon after. Oh, how I began to miss the days when I was so blissfully ignorant of health insurance beyond co-pays. This is when I learned that different services, such as radiology or anesthesiology, got billed separately and that each item had codes and a cryptic description. There were hospital charges, insurance reductions, copays, and amounts owed in dizzying lists. I received separate bills each from the hospital, my primary care provider, gastroenterologist, radiology, surgeon, and anesthesiologist.

The total charges as listed on the 33-page hospital bill for my second stay.
This excludes GI, surgeon, radiology charges, etc.
All told, my medical costs that spring exceeded six figures. It turns out that Crohn’s disease is not only a literal pain in the ass, it’s expensive, too. Fortunately, I was covered by a good health plan through my job, and we had saved up an emergency fund, which would cover out-of-pocket expenses. That “Maximum Out-of-Pocket” figure on my plan description held a whole new meaning for me. It’s now something I pay close attention to when selecting a medical plan.

Rejoining the World

Along with learning how to eat again came some anxiety about social gatherings and going back to work. Spending so much time in the hospital and recovering left me feeling sidelined from life, and as I recovered I grappled with a lot of things. I was only 29 and had never known anyone my age who was chronically ill, and now felt "different" - my experience was isolating.

Would people understand? Would they act differently toward me? How should I act? How do I answer questions? Will anyone understand that just because I’m out of the hospital, that doesn’t mean that I’m “better’? How much about my condition and experience should I share, and how much will people be willing to hear? How do I thank them for their support?
For the most part, people were very kind. Some friends offered to listen if I needed to talk, which I appreciated. At the time, I found that I wasn't really ready to talk yet, and wasn't sure what I would even say. I found that my condition is little understood, and that people moved on faster than I did. This meant that sometimes if I wasn't feeling well or was finally ready to talk, people didn't always understand or weren't ready to listen. Sometimes I just felt like if I talked about my experience, I was simply annoying people (I still feel like that, at times).

In some ways, the days down the road were more difficult. Even after I was out of the hospital and recovered from surgery, I was still trying to figure out if my medications were working, how to establish relationships with my doctors, and how to maintain my new-found "health" and energy. But social outings were different than they used to be, because my diet was altered and my energy levels were sapped easily. Saying 'no' to some events and gatherings became something I had to do more often, and that was not always understood.

Not all of my friendships – ones I had then, and some since then – have survived the test of time. I can’t blame all of these losses on Crohn’s, because many relationships evolve over time, as life becomes busy with families, jobs, and moves. But no matter what, I have had to accept that my disease is a factor that impacts my relationships, and that hurts.

Moving on

Life went on with it's peaks and valleys, as it tends to do whether you’re ready for it or not. Not only did the pain from my surgery go away, but once I healed, I realized that the constant pain in my gut was gone! I felt better than I had in months, and life was so much better. I had to add a medication to my regimen that fall, but it helped quiet the symptoms that had reappeared. I found a routine, and came to peace with my new life. Over the last half of 2005, I started the first of my last two semesters of grad school, and celebrated my 30th birthday and a new job.

On Sunday, May 14, 2006 – one day shy of the first anniversary of my resection – I participated in my graduate school commencement ceremony. I had earned my MBA, and had done it within the time frame I set out to do it in. My family was there to cheer me on, and as it turns out, I (literally) didn’t walk across that stage alone. Two days after the ceremony, we would learn that I was pregnant.

1 comment:

  1. Wow, Heidi. What a story. I actually got goosebumps at the end. One chapter "closes" (as much as it can) and another one opens...