Coping | IBD
January 2016: Two weeks, two procedures, two sets of biopsies.
Two times I was driven to my gastroenterologist’s office, handed a gown to change into, instructed to leave a urine specimen, covered in adhesive pads and an array of wires to monitor my heart rate. Two mornings I waited my turn to be greeted by an anesthesiologist in the surgical center, hoping for answers, worrying what I’d wake up to. For the first, I was severely dehydrated; it took 20-30 minutes to get a vein for the IV. For the second, I had a mouthpiece placed between my teeth and strapped around my head. Both times the heart monitor was a beeping frenzy.
Then came the warning. The injection. The thought, as the room began to spin and I drifted into a deep sleep, that maybe I’d wake up to answers.
For at least four months by this time, I’d been feeling like I was flaring. Constant fatigue and weakness, loss of appetite, fluctuating weight, joint pain, worsening migraines, skin condition acting up. One week being in the bathroom nonstop, the next not being able to relieve myself for days on end. Feeling so bloated I couldn’t breathe or focus on anything. Seeing blood, something unusual for me. Cramping and abdominal pain. On Halloween I went in for a CAT scan and, surprise surprise, it showed a whole lot of nothing. So we moved on to the scopes.
As I started coming out of the fog, I kept my eyes closed and tried to listen to the doctors and nurses. I can’t be sure how much of the chatter I heard was real, vs. how much I made up. But it seemed promising. Twice I was wheeled into recovery, given juice to drink and told to pass the air from my system. The doctor would be in to talk with me soon.
Then came the bomb. “Everything looked good,” he said. Twice. And with that, my heart sank. Twice.
No signs of active Crohn’s during the colonoscopy. No polyps. Nothing. Just some trouble preventing a look at the ileum. Nothing alarming during the endoscopy, either. Clear from both ends. And all biopsies came back clean.
With the CT scan from October, that made three times I’d now heard the dreaded, “Everything looks good.”
I went back to work, back to life. People asked how everything went, so I told them. As you can probably guess, I heard many more times how great my news was, how glad everyone was to hear it. And after so many iterations of this, something inside me just snapped. “It’s actually really frustrating to me,” I said to one person. “Everything may look well and good, but I don’t feel well and good. And I still have no idea why.”
Here’s what many people don’t understand about living with a chronic illness—you’re already sick; no matter how “good” the results of any exam, any test, any procedure, your illness is something you always carry with you, something you’re forced to deal with. Every. Single. Day.
You’ll have some good days and some okay days, but the fact is, there will also be bad days. And when you have bad days, you want answers.
December 1, 2007: After four months of being extremely sick, bounced from one specialist to another, poked and prodded and examined intimately and uncomfortably in every which way you can imagine, I had scopes stuck in me from both ends. The night before, I thought I was dying. I weighed 86 pounds, was extremely dehydrated, and felt a tremendous amount of pain. I had nothing left to give. So being wheeled into the hospital the next morning, I was clinging to hope—these procedures, in my mind, were my last chance at answers.
I remember crying as the anesthesia started making everything cloudy. I remember thinking, “Please.”
And I remember waking up in recovery, seeing my doctor appear, feeling like my heart would pop out of my chest. My worst fear? That he’d say they found nothing. That “everything looked good.” Because if that was the case, I was out of options, ready to give up. Because if that was the case, the people who didn’t believe me, or didn’t think it was that bad, or told me I was just stressing about starting college, they’d be able to shake their heads and tell me I was fine.
This is how my life is going to be. Unsubstantiated pain.
And then, it was real. He said, “You have Crohn’s disease.” I don’t think I’ve ever felt a greater sense of relief in my lifetime.
I started taking medication that night, and I’ve never stopped since. I signed online that night (back in the AIM days) and started telling all my friends that I finally knew what was wrong with me. I was so unbelievably happy.
Sound backward, tears of frustration over good news and tears of joy over bad news? Depends on how you come to define and understand what’s good and what’s bad.
When I was told I had a disease, a chronic illness, that there was tangible evidence all over my body, it was validation. My pain had an explanation, a name, even. There were treatments. There was hope. Granted, I had no idea what kind of struggle was ahead of me. But after four months of unanswered questions, four months of people telling me to will away something I couldn’t possibly will away, this was a turning point. It was the best possible result I could’ve asked for.
Lately it’s been feeling a lot like 2007. I’ve been feeling things I haven’t felt in at least 5-6 years. I’ve been struggling and trying to keep up with my life. And I’ve started hearing the suggestions again: that it’s stress, that it’s normal, that I just have to be positive, that everything will turn around, that everything will be okay.
The fear that people might not believe me is still very real. It’s the feeling of having to prove you’re sick, not just say that’s how you feel. I don’t have that proof right now.
My only saving grace is the last procedure I’m scheduled for, the capsule endoscopy. Step 1 is the patency test, to make sure I’ll be able to pass the pill cam once I swallow it. If all goes well, step 2 is getting hooked up for the camera to take photos of my small intestine, then transmit the images to a sensor device I’ll be wearing.
My doctor scheduled this procedure after I woke up from second scope. And it means a lot to me that, beyond his delivery of the “good” news, he wants to take a closer look. It means he believes me. And that means the world.
For weeks, I’ve been having these dreams ending with cliffhangers, waking up in a panic throughout the night. I go in for test after test, my doctor tells me—you guessed it—that everything looks good. And then he says there’s one more test we can do. I get all hooked up, they inject the anesthesia, I cross my fingers that I’ll wake up with answers, and then the credits roll like it’s the end of a movie. I wake up. I’ll never know.
I’ll say it again: it’s my biggest fear.
Of course I’m glad I didn’t end up with horrible news. For a while, I was extremely worried about colorectal cancer. Knock on wood, I was so relieved I didn’t wake up from my colonoscopy to that kind of answer. Then I was worried I might actually have celiac this time around. I’m glad that isn’t the case, either, as I’m already so picky with what I eat and what feels safe for me. So to that end, there were a few positives.
But waking up to hear I still have no validation is devastating in it’s own right. I know my body better than anyone, and I know something is wrong. Twice before this has happened to me, and both times I proved friends, family and doctors wrong. So every time a chance for an answer and a plan of attack slips away, it’s like another weight falls on my shoulders and buries me deeper.
This last procedure is the easiest and most painless of them all, but it’s the one I’m most nervous about. Neither a colonoscopy nor endoscopy can look at the whole small intestine. The capsule endoscopy will take a direct look at the one area we haven’t cleared yet. It has the potential to show evidence that scans may have missed. That means there’s still hope for an answer to what’s been going on, an adjustment in treatment, and an end to this feeling of discouragement.
But there’s also a chance I’ll have the sensor unstrapped, go about my business, and a few days later answer a call to hear, once again, that everything looks good. And then I have no idea what’s next.
I can tell you I’ll be holding my breath, because no news isn’t always good news, and “good” news isn’t always helpful news. Right now, good news is substantiation—an answer, lying in wait, to be photographed. It’s that sigh of relief.
So, colleagues, friends, loved ones… if there’s one kind of support those of us chronically ill could really use above all others, here it is: let us determine just how “good” our news is, before you do.
Thank you for your honesty. Of course we don’t want to hear bad news. I also don’t want to hear your CT scan isn’t showing a block.I KNOW… it doesn’t always show that I am having a partial block. Tell that to my body that is outputting liquid faster than they can get it in through the IV. Five days later my mini hospital vacation hasn’t revealed why I am having all these lovely symptoms.
I don’t want bad news I just want to know why my CURE surgery isn’t what I thought would bring. WHY am I still in and out of the hospital and most of all can someone please give me some answers!!!
Thanks for reading, Lynn! Happy to be honest—felt good to finally let it out.
I’m so sorry you’re going through a similar situation. I know it’s incredibly frustrating when something feels wrong and you’re being told you’re fine, based on test results. No one knows your body better than you. Definitely stand your ground. Every time I’ve had a hunch something was off, I’ve always been right (even when doctors disagreed with me at first).
I hope we both get some answers soon!
I completely started to tear up while reading this, I can really relate I’m going through something similar right now. Blood work coming back ok not great but not horrible. A clear endoscopy and so unfortunately my doctor won’t do a colonoscopy. It’s so hard to explain what I’m feeling but you described it perfectly. Everyone is glad for good answers but I just want some validation. Thank you for reminding me I’m not alone, it’s hard to not feel that way sometimes! Good luck and I hope you get the answers you are looking for!
I received the dreaded good news on lab work again on Monday… It’s very dissapointing to have little hope of feeling better. Nothing found means no treatment, no change. I was diagnosed with crohns disease 21 years ago. Lately I have been very tired, my joint pain is terrible, and some other issues similar to the ones you’ve shared, but I get the feeling my specialist (who I love and trust) doesn’t think it’s much of a problem. Now I have to go to my GP and start over, and it’s been my experience that they don’t do much. It’s like I get referred back and forth by the doctors. I definitely do not feel validated. But your post brought me comfort and validation. I will have to keep pushing for an answer!
Aw, thanks so much for reading, Nicole! I wish you weren’t going through a similar situation, but I’m at least glad that I was able to help in some way. You’re definitely not alone. Writing this and reading people’s comments has made it clear to me that many more of us are struggling with these emotions than I thought.
I think sometimes we almost feel guilty for wanting an answer rather than the typical “good” news we’re supposed to want. It’s hard to explain to those who haven’t felt it themselves. So maybe we tend to keep it to ourselves, and it just builds up until we can’t hold it in anymore.
This test was a breeze. It was interesting. Fun, even. The prep/fasting makes me sick and totally wears me down, though. But what scares me more than anything is waiting for the phone call that I feel like is kind of make or break. If I hear one more time that everything looks good, part of me is really going to be crushed. I won’t give up searching for answers, but it’ll all just be so much harder for people to understand when there’s no validation to back me up. I hope we both get some helpful news!
I love that: “the dreaded good news.” Absolutely perfect description, simply stated.
I completely agree with and can relate to everything you said. I feel like my GI believes me, but doctors have so many patients. Which is why I really believe we have to keep pushing and advocating for ourselves. They don’t know what we’re feeling every minute of every day, so it’s our job to tell them. As many times as it takes. It’s extremely frustrating when you’re bounced around, especially when a primary can only do so much for you. And even more so when you DO love and trust your specialist, as you said. The first time around it was a matter of me switching doctors to get what I wanted. Now its not that simple, because it’s not like he’s refusing to do anything. Crossing my fingers this pill cam caught images holding my answer. And that you get answers soon, too!
And thank you for reading! 🙂
Keri, God bless you and may He grant you strength, grace and comfort throught your journey. Without God, I know I would be in much worse shape! I suffer from ulcerative colitis and IBS and understand much of what you are going through. It is so hard for others (impossible, actually) to understand what we experience; and so difficult to always stay strong and not fall into despair. Some days I feel fine, and I try to be grateful for them instead of thinking too much about how I know they won’t last. Thanks for sharing; it helps the rest of us to know that we are not alone!
Thank you, and thanks for reading! It makes me so happy hearing I helped people feel a little less alone. 🙂
Dear Keri, well the small bowel follow through was normal, on Friday I swallow the camera. The nausea, pain and bloating and going back and forth between diarrhea and constipation, have to sleep sitting up, blah, blah, blah…………. I am at my wits end with feeling sick all the time, some days I am completely incapacitated. All I can eat are Cherrios, but sometimes not even those. Everything makes me bloat, sick. I just want it to end. Can’t even remember the last time I felt good, normal. Thank you for reach out to those of us out here suffering. xo