58 days

A lot can change in two months. I don’t look the same. I don’t feel the same. I’m not sure if this is a good or bad thing, but it’s the truth. In the 58 days since I last posted an update, we sold our home, moved, and I started a new job. I’m officially out of my comfort zone, and some mornings I wake up and wonder if I’ve made the right decisions. I suspect that a certain amount of self-doubt is typical when you’re processing change, but nonetheless, sometimes it keeps me up at night.

What else has happened in 58 days? I’ve gained 15 pounds, and I’ve completed three Remicade treatments without any adverse reactions or side effects. All in all, I’ve been blessed with a smooth recovery and not a day goes by that I’m not thankful for that. Of course, I’m not immune to a bad day or a moment of self-deprivation, like when I hear hurtful words about my weight: “Go eat a stick of butter”; “You look like a skeleton”; “People probably think you have cancer”. I’d love to tell you that these words don’t affect me, that I don’t hear them in my head while I stare at the number on the scale, but that’s not true. Of course, it’s possible that some people don’t know what to say, that they want to share their concern or support, but can’t find the right words. I wish I could tell these people that it’s okay not to say anything all.

I look in the mirror each morning and I know that I don’t look the same, but that’s not really the point of my recovery, is it? I’m healthy, I have more energy, and I feel better than ever before – these things are far more important than the number on my scale. The large scar on my abdomen doesn’t even bother me anymore. I see it as a sign of strength, a reminder of what I’ve been through and how far I’m come. It might sound trite, but it reminds me each morning that I’m stronger than I realize.

The past six months, though challenging, have taught me compassion, patience, and simplicity, all of which have improved the quality of my relationships with other people. And why shouldn’t they? I know what it’s like to juggle home, work, and illness, and I know what it’s like to feel as if everything is crumbling around you. And most recently, I know what it’s like to face the harsh reality that I might be done having children.

Earlier this year, before I got sick, my husband and I had several discussions about whether we want more children or if we’re “two and through”. Although we were leaning toward the latter, it’s something totally different when your doctor tells you it’s no longer an option. To be exact, she said it’s not a good idea. I would have to stop Remicade treatment and if I got sick while pregnant, my treatment options would be limited. This information, combined with the statistics, doesn’t leave me with the warm and fuzzies. I think of everything I’ve been through this year and the thought of repeating it horrifies me. I’m practical enough to know that the risk isn’t worth the reward, especially when the baby could suffer as a result, but as a woman it hurts to accept this decision. As my girls continue to grow and my youngest turns 1 in three weeks, I can’t help but feel nostalgic about having a baby. Although I’ve shared these thoughts with my husband, I think this is something only a woman can really understand. I’m thankful for my two healthy girls, and I suspect it will take time to accept that our family might be complete. Of course, I don’t know what the future holds, but for now I need to focus on my recovery and the next 58 days, one day at a time.

 

 

Day 1 of Remicade

Well, I did it. I survived my first Remicade treatment. My doctors have been talking to me about Remicade for months, but my treatment kept getting postponed thanks to my frequent hospital visits. Yesterday, though, it finally came to fruition, and I have to say it turned out to be a pleasant experience. I went to a cancer center for the infusion, which certainly gave me some perspective. The staff was very friendly and accommodating; they offered snacks, drinks, movies, a blanket – anything to make me more comfortable. To be honest, it felt like a much-needed break. I sat in a heated massage chair and took a nap. A nap! As a parent, how many times do we get to take a nap? It felt like something I read about but never had the pleasure of experiencing.

Before I started the infusion, they took my vitals and weight. After I sat down in the comfy chair, the nurse gave me Tylenol, Benadryl, and a steroid to prevent adverse reactions to the treatment. They let the medication set in for 30 minutes; meanwhile the pharmacist came to talk to me. She explained how Remicade works: Crohn’s Disease is an autoimmune disease, so this treatment will suppress my immune system to keep me in remission and prevent future flare ups. Just like any medication, there are risks. Because Remicade will suppress my immune system, I will be more susceptible to infection. I won’t be able to fight off something simple, like a cold as easily and it’s possible that at times it could develop into something more substantial, like bronchitis. This explains why I had to undergo a chest x-ray, blood work, a Hepatitis test, and a TB test to prove that I’m infection-free before I was permitted to start Remicade. The worst potential risk is the increased chance of Lymphoma, but the odds are still in my favor, so I’m not giving this a second thought.

Once we finished reviewing the side effects and risks and the medication had set in, the nurse started the infusion. The infusion ran for two hours and was timed so that the IV started off slow and then dispensed the medicine faster as time went on. I thought I would feel different during the treatment, but all I felt was tired and that was due to the Benadryl, not the infusion. Some people report that their joints feel achy the next day, but I didn’t experience that. The next day I still felt like me. I worked all day, played with my kids, did laundry – you’d never know I spent half a day in a cancer center, getting “infused”.

My next two infusions are scheduled for 2 and 6 weeks after the first. After that, I’ll go every 8 weeks. It’s a commitment, but it’s worth it. This treatment gives me hope and opportunity. I went 13 years before I experienced any complications; who says I can’t go 13 more? I’ve been blessed with the opportunity to live without fear of getting sick each day, and it’s my hope that since my girls are young, they’ll never remember “sick Mommy” and they’ll never have to experience her again.

What they don’t tell you

When I was discharged from the hospital, I was given an entire folder filled with information: side effects of my medications, which symptoms to call the doctor about, how to take care of my sutures–the list goes on. I was eager to head home and see my family, and as soon as I got home I threw the folder in a drawer. A week and a half later, I realize what’s not in that folder. For as much as they talked to me about physical recovery, they didn’t prepare me for emotional recovery.

I think it’s safe to say that what I’ve been through is traumatic and there’s a recovery process for that. I need to accept what happened to me and find a way to move forward without forgetting my experience. Although I’m confidently typing these words now, I didn’t really understand all of this until three days ago. I was at the orthodontist’s office–of all places–and I started crying. My orthodontist stopped what she was doing and let me take a break while I collected myself. Although what she was doing did hurt, that wasn’t what triggered my tears. While she clamped, scraped, and chipped away at the ceramic brackets, all I could think to myself was “haven’t I been through enough?” And that’s when it hit me.

Up until now I haven’t truly felt the gravity of the past three months. I lived with chronic pain for too long. I tried numerous medications to no avail. I had an endoscopy, colonoscopy, CT scan with barium, nuclear medicine white blood cell scan–you name it–without promising results. I was admitted to the hospital twice in one month. I spent three weeks in the hospital, away from my family. I had a foot of my intestine removed. And the night before surgery, I shared with my husband what I wanted for our girls if, God forbid, I didn’t wake up. Of course, there are far more traumatic experiences, but this is mine and I shouldn’t dismiss it.

When I first came home, it was hard for me to eat. I still had it in my head that food is the enemy; I eat and immediately after I’m in pain. After several days, I started forcing myself to eat to prevent nausea. When I mentioned this to my doctor at a follow-up appointment, she assured me that it’s all part of the recovery process. Where was this information in the folder? Where was the pamphlet on learning to think and act like a healthy person? Turns out, it doesn’t exist; it’s what they don’t tell you. She then dropped the bomb that medical science affirms that 40% of Crohn’s patients will need another resection 5-7 years after their first surgery. She also said that new treatments, like Remicade, can reduce these odds. It’s scary to think about a statistic like this hanging over my head, but again, learning to accept it is part of my emotional recovery.

After a week and a half of eating small meals, I’m beginning to trust food again. I’m going back to work next week, and I look forward to returning to a normal routine. The more I do what I used to do, the more I feel like myself again. Except this time it’s a better version of me, a healthy me. And as I continue my recovery, I’m learning to think like a healthy person. A healthy person doesn’t shame herself for her dramatic weight loss. A healthy person isn’t afraid to eat. A healthy person doesn’t stay holed up inside her house, in fear of getting sick in public. And a healthy person doesn’t focus on the fact that she was sick, but that she persevered and she’s stronger for it. I say this not just for my benefit, but for anyone else who is learning to change the way she thinks about her health, because again, this is what they don’t tell you.

Post Op

Well, I’m finally home. It’s been 6 days since my surgery and 11 days since I was first admitted to the hospital. What was it like to spend two weeks in the hospital? Frustrating. People always encourage you to get plenty of rest when they hear you’re in the hospital, but it’s almost impossible. I was constantly woken up so that the nurses could take vital signs, give me medicine, administer Heparin shots, replace my TPN, administer IV antibiotics, etc. Once I was woken up, it was hard to go back to sleep because of the pain and discomfort.

But I’m getting ahead of myself. Let’s start with the day of surgery, which was filled with anxiety. My husband and my parents came to the hospital, and in the hours leading up to the surgery, it was obvious that we were trying to talk about anything other than the fistula in the room. Of course, there was a delay in the OR so that just made us more anxious. When they finally took me back to pre-op, I was surprised by the number of people prepping for surgery. The large room was filled with smaller rooms divided by curtains, each with someone awaiting surgery; it was like horses in a stable.

When the anesthesiologist finally said they were ready for me, the atmosphere around me quickly changed. Up until this point, I was nervous and my family remained calm. But when my husband and my parents gave me a hug before the doctor took me away, they each started tearing up. This time, I was the calm one. I’ve spent the last few months in chronic pain, dodging surgery as if it were reserved for the lost causes. Now, headed to the OR, I was at peace with what needed to happen. I know that God has promised good to me and I put my trust in Him.

Three hours later I woke up, back in the stable, and I immediately asked for my husband. Matt came and held my hand as the nurses gave me pain medicine and monitored my vitals. Eventually my parents were allowed back too, and it was clear that we were all so relieved it was finally over, not just the surgery, but this chapter in our lives. When I was finally coherent enough to notice my surroundings, I realized that I was hooked up to more things than you can imagine. I had two drains coming out of my stomach, a catheter, and antibiotics and TPN attached to my PICC line. Luckily I didn’t end up needing an ileostomy bag, which was my biggest concern. In fact, when I first woke up from surgery, they said I repeatedly asked if I had a bag and they kept reassuring me that I didn’t.

When they took me back to my room, I couldn’t focus on anything but the pain. Every hour I complained to my nurse, so I didn’t get much sleep. The doctor finally prescribed me stronger pain medication and I slept most of the next day. Once they removed the catheter, getting up to go to the bathroom was like untangling a web of tubes and cords. I’m so thankful that Matt stayed with me all weekend to help through those first few challenging nights.

I started my recovery with baby steps, literally. I walked from the bed to the bathroom, then I walked from the bed to the nurses’ station outside my room, and finally I walked the entire floor. Four days after my surgery, I was ready to walk out the door. The staff removed the drains and PICC line and I was no longer physically attached to anything. I won’t describe what it felt like to have a tube pulled out of your stomach, but let’s just say I shouted something incomprehensible.

And now I’m continuing my recovery at home. I can’t lift the girls or drive for two weeks, which is difficult. It’s hard not to be able to get up and go like I used to, but I’m dealing with it. The reality is that I’m blessed to have had a competent surgeon, a successful resection, and so far, a smooth recovery. On discharge day, while I was being wheeled out of the hospital by a nurse to meet my husband, this reality hit me like a ton of bricks. One of the nurses who took care of me all week, who brightened my day with stories of her grandson, who made my bed for me and brought me fresh water to make me more comfortable, and who cheered me on while I slowly walked the hallway, shared with me that she too has Crohn’s disease. She was misdiagnosed for almost 10 years and by the time they correctly diagnosed her, the disease had progressed so much that it almost killed her. She had five surgeries, including one to remove her entire colon, resulting in a permanent colostomy bag. I was stunned. How could this woman take care of me all week and not share this sooner? Why didn’t she remind me that things could always be worse? I don’t have answers to these questions, but I do know this: I’m thankful for her patience and compassion. I’ll continue making baby steps with her in mind.

The good, the bad, and the fistula

I’ll start with the good. This weekend we finally celebrated Easter. Because I was in the hospital on Easter day, we couldn’t enjoy our normal family traditions: church, food, family, fun. The weather was so beautiful this past weekend that we decided to have an Easter “re-do”. We had an egg hunt for Mackenzie, who quickly found all of the eggs. Once she realized there was a piece of chocolate in each of them, she started unwrapping all of the candy. We’re still rationing that chocolate, so next year I need to take a more diversified approach to filling plastic eggs.

We also gave the girls their Easter baskets filled with toys. Mackenzie enjoys taking care of her baby doll everyday, so she loved her new play diapers and bottles. Lexi was more interested in the basket than the toys, of course. We ended the day with a ham and all the fixings. I’m so thankful that we celebrated Easter as a family, even if it was three weeks late.

Now for the bad, which incidentally is also the fistula: I’m in the hospital again. It’s only been three weeks since my last visit, but here I am, back at Johns Hopkins. And it’s all thanks to the fistula, which by the way, is a word I didn’t even know existed until a month ago. Nevertheless, the fistula from my bowel to my bladder is causing me trouble. It seems that bowel is starting to leak into my bladder, which has created an infection and is causing me pain. I’m having surgery tomorrow to remove the fistula and resect my colon, as well as remove about a foot of inflamed intestine. The surgery will take about three hours. My doctor will attempt to do it laparoscopically, but she might need to open me up if things look worse on the inside than she anticipated. I will be in the hospital recovering for 3-5 days and then I’ll continue my recovery at home for 2-3 weeks.

Of course, I’m anxious about the surgery, but I’m also excited. I feel like I have hope for returning to a normal life. My doctor said I should look at this as a fresh start. She is removing the disease and then I will have a normal GI tract. I haven’t heard the words “normal” and “GI tract” in the same sentence in… well, let’s not reminisce. In addition, the Remicade infusions could prevent future inflammation and complications. My doctor said most patients are surprised by the boost in energy they experience after surgery, and that most of us don’t realize that the fatigue we experience is a symptom of the disease, not a side effect of everyday life.

I almost cried as she told me all of this. When chronic pain has become your normal, it takes away a piece of your spirit. I’m a Christian, so I have faith. I’m an optimist, so I have hope. But my spirit, what distinguishes me from everyone else, has diminished some. I don’t say this out of self-pity or loathing, but in sincerity. When you spend enough time watching your daughter play outside while you sit inside on the couch, it affects you. When your daughter sees you on the couch and without hesitation touches your stomach and says “Mommy tummy hurts”, it affects you. And when your daughter prays for you each day and speaks healing over you, saying, “Mommy all better,  bye-bye doctor”, it nearly crushes you. I’m lucky that my girls are young and won’t remember any of this, but I will. And here’s what I’m choosing to take with me:

I’ve received exceptional health care during my time in the hospital. The nurses are friendly, attentive, and patient, and the doctors are competent and thorough, with a good bedside manner. The staff here truly wants me to succeed.

I have a great support system at home and at work. My family, friends, and coworkers reach out to me on a daily basis, offering prayer, support, and help in any way they can. They make this feel like less of an inconvenience, which helps me to relax.

My older daughter, Mackenzie, is more empathetic than I would expect a 2 1/2 year old to be. She holds my hand and rubs my back when I’m in pain, she hugs me when she can tell I need one, and most importantly, she prays for me. I never imagined a scenario in which I would rely on my daughter instead of the other way around, but I’m glad to see the kind of person she’s becoming, one who cares about people.

Lastly, I’m stronger than I realized. I’ve spent much of my time in the hospital alone, and that’s okay. Matt still has to work, the girls need to go to school, and life goes on. I’ve spent a lot of time reflecting in this blog, which has helped me more than it’s helped others. I look forward to looking back on these posts when I’m healthy, with a humble appreciation of the simple things we all take for granted.

 

 

An ode to solid food

Oh, how I’ve missed solid food. It’s a relationship I didn’t appreciate until my GI tract came between us. If I thought I’d be good at it, I’d write an ode to all the foods I’ve missed these past two weeks. (Obviously it would start and end with donuts.) Now I don’t have to leave the room when my family sits down for dinner, I can enjoy my husband’s cooking. I don’t begrudge preparing a snack for Mackenzie, and I can even laugh about the night I almost licked a peanut butter cup in desperation. It’s amazing how much returning to my regular diet makes me feel like a normal person again.

Clearly, the results of my CT scan on Monday were good. The abscess is gone, which means I can resume an IBD-friendly diet. I spoke with my dietitian and we’re going to cycle down my TPN over the next two weeks and then remove the PICC line. My doctor is setting up Remicade treatments, and I hope to be on the road to remission soon enough.

The surprising news is that there is a fistula forming between my bowel and bladder, which isn’t good. My doctor forwarded my CT scan to Johns Hopkins and I’m waiting for them to determine next steps. Two weeks ago this would have consumed my thoughts, but not now. It is possible that I will need surgery to remove the fistula, but then it’s gone forever; that’s good news. Studies have proven that sometimes Remicade can dissolve a fistula; that’s great news. Either way I have a problem that can be resolved; that’s even better news. I can’t let myself become overwhelmed by “what if”; I have to focus on “what is”.

Recently my GI gave me a pep talk of sorts. He said there are generally two types of Crohn’s patients, those with a mild or moderate form of the disease and those whose disease has begun to perforate, creating complications. He said I need to accept that I’m in the latter group, which means the occasional abscess, fistula, and Lord knows what else, but all we can do is resolve one problem at a time. I realize this might not sound like much of a pep talk, but he reminded me to “be still” and take one day at at time. When I was in the hospital I felt like I had a laundry list of problems and the road to recovery seemed overwhelming. But guess what? I was out in a week with two less problems than I had before. In other words, it might take time, but I’ll get there. And in the meantime, I’m eating peanut butter cups.

 

Back at home

I’ve been home for about a week now and it’s been a strange juxtaposition between old and new. I feel like everything changed for me while I was in the hospital, meanwhile it’s as if nothing changed at home. The girls still need the same things: food, diaper changed, bath, nap. Mackenzie still wants to eat cereal for every meal, Lexi still has a runny nose, and my husband still can’t find his watch. I find comfort in their consistency.

The biggest adjustment for our family is the PICC line. Every night my husband hooks up the TPN, which isn’t a quick process. First, he washes his hands and puts on latex gloves. He takes the TPN bag out of the refrigerator, along with my antibiotic. Using a syringe, he injects an antacid and two different vitamins into the TPN bag, and then massages it to ensure everything mixes. Next he hooks up the tubing between the pump and the TPN bag and “primes” the tubing. The TPN fills the tubing and stops when it gets to the end to ensure there is no excess air. Using an alcohol wipe, he cleans the end of my IV catheter and flushes it with a saline syringe. He cleans the catheter again and attaches the TPN tubing. Once it’s hooked up and ready, the infusion runs for 12 hours. The next morning, when the infusion is complete, my husband disconnects the tubing. He cleans the catheter and flushes it with a saline syringe. He cleans the catheter once more and then flushes it with a heparin syringe. He completes the process by clamping the catheter so nothing enters my PICC line while it’s not being used.

If it sounds like a lot, it’s because it is. And while the preparation for the TPN is inconvenient, so is being attached to it for 12 hours. We spend our evenings keeping a curious 2 1/2 year old and a grabby 8 month old away from the tubing. The TPN bag rests in a backpack that I wear around the house, but the tubing extends from the backpack to my arm. It’s very easy to trip over the tubing or for it to get caught on something. I feel like I’m walking around in a minefield.

However, for all its trouble, the TPN is doing its job. I’m getting the nutrients I need each day and I’ve gained back 5 pounds. In fact, I’ve been feeling so good that I returned to work this week, and my family is quickly returning to our normal routine. I’m back to singing “Old MacDonald”, heating up bottles, and enjoying bedtime snuggles. I wipe noses, kiss boo-boos, and beg Mackenzie to let me brush her hair. My husband and I are working as a team more than ever before since I can’t lift more than 15 pounds because of the PICC line. This experience has tested my family’s strength and resilience, and we’re closer for it.

My next step is to meet with my GI tomorrow. I’m praying for good news!

 

My last day in the hospital

I can’t believe it, but I’m being discharged this afternoon! I can’t wait to see my husband and kids. I can’t wait to sleep in my own bed. I can’t wait to get back to normal life.

I’m going home with my PICC line and a CPN (central parenteral nutrition) bag. A home care nurse will visit our house tonight to show my husband and me how to administer the CPN and antibiotic intravenously. In addition to the CPN, I’m on a clear, liquid diet until I meet with my GI in two weeks. He will do a CT scan to ensure the inflammation has settled, and if it has, he’ll remove the PICC line and I can slowly reintroduce solids into my diet. For now, all I can think about is donuts.

When I reflect on the week I spent in the hospital, I think about what I’ve learned. I’ve learned that I need to stop putting myself last. I walked around in pain for a week before I finally did something about it, and guess what? When I got to the hospital no one handed me a medal for suffering. I have to stop worrying about how my illness might affect the girls’ schedule or our family’s weekend plans. If I’m not healthy, I can’t support my family, so I have to do what is necessary, and sometimes that means taking time out to receive the treatment I need.

I’ve learned that my illness is serious and I have to start treating it that way. I need to stop thinking that I can just take a pill and everything will be okay. This is about more than just medication; this is a lifestyle change. I have to manage my Crohn’s disease on a daily basis and recognize that this affects my entire family.

I’ve learned that my family can function without me, but that doesn’t make me irrelevant. This has been a tough lesson for me to learn. I pride myself in organizing play dates, preparing the girls for Crazy Hair Day, and keeping my family on schedule. However, this past week my husband handled everything. I’m sure Mackenzie’s hair wasn’t done each morning, they ate McDonald’s for dinner, and who knows what else, but they survived. Instead of focusing on how life moved on without me, I need to appreciate that I have a husband who can pick up my slack when I need him to, and I have two kids who are resilient enough to roll with the punches.

I’m thankful that I allowed myself this week to receive treatment, rest and recoup, and I made a promise to myself that next time I won’t wait a week before seeking help. Sometimes I have to come first.

 

Best day ever

Without a doubt, today has been the highlight of my hospital stay, and that’s all thanks to my spunky 2 1/2 year old, Mackenzie. My husband brought her to visit for the day and kept the baby, Lexi, at home.

I can’t say enough how much seeing Mackenzie lifted my spirits. She climbed into my bed and we read all of the Dr. Seuss books she could fit in her bag. We walked through much of the hospital, and everyone stopped to talk to her. I was so proud to show her off. Mackenzie is very independent and insisted on walking next to us, without holding our hands. Instead, she walked with her hands stuffed in her jean pockets, just like her Dad. When we got back to my room, I could tell she needed a nap, so I read to her until she fell asleep. We took a nap together in my bed, and for that hour things felt normal again.

When it was time for her to go, she told me to put on my shoes so we could all go home. I explained to her that I couldn’t go home until I felt better, and she seemed to accept that answer. It’s ironic that sometimes children can accept things that adults struggle with.

After they left and before I had time to mope, my doctors gave me some good news. It looks like the antibiotics are working on the abscess so there’s no need to drain it. And since they’re no longer preparing me for that procedure, they switched me to a clear, liquid diet. Chicken broth, Jello, and apple juice never tasted so good 🙂 Again, best day ever.

 

Day 5 and counting

It’s Day 5 of my hospital stay and I’m waiting for the doctors to drain the abscess.

In addition to the abscess, we’re managing my nutrition. I’m still not allowed to eat or drink anything, and today they put in a PICC line. If you, too, hadn’t heard of a PICC line until now, it’s a catheter inserted in your vein so that you can receive medicine or, in my case, nutrition intravenously.

Despite my anxiety, the process was quick and easy. Two health care providers did the procedure right in my hospital room. Everything was covered and sterile, and they gave me some anxiety medicine right before they inserted the IV. I didn’t feel the catheter follow my vein, and before I knew it, it was over. It looks like a large IV in my lower bicep with two “prongs” hanging out, one for medicine and the other for nutrition. The IV is heavily taped so it stays dry and sterile.

I’m currently slated to receive the IV nutrition 24 hours a day, and we’ll slowly cycle down to 18 hours, 16 hours, and 12 hours a day, and then they’ll discharge me. When I’m discharged, a home care nurse will come by twice a week to draw blood to check my nutrition levels and to check the IV.

In the midst of all this, my blood sugar dropped and I was permitted three sips of apple juice. That’s right, three. They actually counted each sip. I’ll leave you with that.