The Frustration of Needing Answers as an IBD Patient
I have been having more GI symptoms than normal over the past year and a half. They have definitely gotten worse over time but I am still at the point of not having enough of the answers needed to propose some kind of treatment plan.
It has taken me a while to get to where I am currently. My symptoms were brought on very gradually. I also passed many off as “normal” for years.
Anyway, my point in bringing this up is because I know how frustrating it can be to know there is something wrong with your body, but no doctor can figure it out. And you don’t have a clue either; despite doing your own research, asking questions, being in tuned with your body, etc.It is times like these that having an invisible illness is even more challenging.
I think, for obvious reasons, people look at tests coming back negative as a good thing. And for the most part, it is. But it is also an infuriating feeling when day in and day out you KNOW without a shadow of a doubt that something is going on with your body but nothing is adding up. There are so many times in a person with inflammatory bowel disease‘s life that things are either not showing up on the tests needed, symptoms seem to come and go for no rhyme or reason, and no one can put the pieces together.
And while a lot of my tests have shown definite leads recently, I don’t think I have been at the right place (hospital) at the right time (when I felt so badly I needed the emergency room.) For example, I was four hours away from my hospital on Superbowl Sunday of this year when I started feeling incredibly sick. I did anything and everything to avoid going to the ER but I eventually realized I had no other option. I felt like I was overheating, my stomach was in so much pain, the output of my ostomy was way too high, and I was throwing up a tremendous amount and was so nauseous.
When I got to a nearby emergency room (a trauma center so not just some rinky dink local hospital,) I was diagnosed as septic given my temperature never went above 92 degrees F, my heart rate was incredibly high, my lactic acid was elevated and I had a white count of over 22,000. Long story short, after two courses of flagyl and cipro, three bags of saline (with sugar added,) nausea and pain medication, I started to feel better. Because my lactic acid had gone down significantly since starting the intravenous treatment, the doctor who was taking care of me in the emergency room felt comfortable giving me the option to go home or be admitted because he didn’t believe I was in immediate danger. I also continued on antibiotics for the following three weeks per his recommendation.
After speaking with my gastroenterologist the following morning, he urged me to come to the hospital where he saw patients and be admitted. He was also emphatic that I shouldn’t wait. But, given it was my dad’s birthday and I was feeling better (thanks to the medication,) I waited a couple of days. I am never in a hurry to go to the hospital.
By the time I got to the emergency room (where he told me to go,) my white blood cell count returned back to normal and the imaging tests that were done (that should have been performed a few days prior when I was at my worst in the other ER) didn’t show anything.
My parents and I were really upset about it and I felt terrible for feeling disappointed. I have been in situations before where I was receiving terrible news after terrible news, was always admitted and I remember how awful that was for my family and I … both physically and emotionally. Yet, we were all upset that the tests didn’t reveal what had happened not only a few days prior but four other times in 2016 alone. I even had to be taken by ambulance one time which was so embarrassing!
Anyway, for anyone who is sitting at home feeling lousy with no real answers, I want you to know, I GET IT! I know you don’t want bad news or to be sick, but given how awful you are feeling and the impact it is having on your quality of life, answers (even bad ones,) provides hope in a lot of ways. When reasons for things are discovered, treatment plans can begin and even though it might be a vigorous trial and error process, at least you can feel like you are moving forward. When you don’t even have an explanation to why you are feeling the way you do, it is depressing because you know you aren’t doing anything about it (because, what is there to do?) so you aren’t beaming with hope that things are going to improve.
Plus, it is validating when the reason for your pain and suffering is finally revealed. Given how oftentimes people who suffer from Crohn’s Disease or ulcerative colitis have to see many doctors in various specialties and usually have to undergo mountains of tests in the process, that patient is bound to come across one or two physicians who may doubt them. That, in and of itself, is not a good feeling… to put it mildly.
To everyone out there who is either suffering from inflammatory bowel disease or is a caregiver of someone with Crohn’s Disease or ulcerative colitis, please know that you feeling disappointed when certain tests don’t reveal anything – when you aren’t just going through the motions in a followup capacity – is very understandable. After going through so much, most of us know our bodies incredibly well. Most of us also want to stay as far away from doctors and hospitals as we can. So when we are seeking help, it is usually because we have absolutely no choice because our quality of life has gotten THAT bad.
You are not alone. It may feel that way much of the time but trust me, so many people understand. I understand.