I'm about to get on an airplane to go to an interview and I have a kidney stone. So far I haven't experienced the crippling pain but it's been getting worse every day over the past several days. Today the pain increased a couple degrees but I'm about to be trapped in a metal can thousands of miles above the ground. It better not peek. Usually I would highly medicate at this point but since I have to be coherent in a few hours I can only minimally use the rx pain killers.
Chronic illness problem #235: Due to all your comorbidities, you are not sure which member of your medical team to call first when a new symptom of unknown origin pops up.
Hey guys. I've dropped off the face of tumblr because I've been doing pretty good recently besides the fact the methotrexate kicks my ass once a week. Otherwise, like I said, pretty good.
Anyways, I've popped by to see if anybody's had experience with sialolithiasis (aka salivary stones). I've had this strange, stabbing pain on and off for years right where my jaw and earlobe meet. It comes on within 5 minutes of eating salty foods or not drinking enough water with a meal and stays for 15/20 minutes before dissipating. Because it's so intermittent (once a month, I'd say) and because of all the other health stuff I deal with, I only give it thought for those 15 minutes of flaring.
I googled the symptoms today and it lines up perfectly with sialolithiasis and apparently there's an ENT specializing in the condition just a stone's throw from my house. I have a PPO insurance plan so I could go right to a specialist without a referral, but I'm debating calling my primary care doc first to get his take. But I worry he's going to be like "...and why have you never brought this up before?" Thoughts?
Given a couple of responses to my previous query (thank you!), I figured I should add to my last post and give a little (actually a lot) of my back story. (I've added headers if you don't want to read it all.
Initial Flare & Autoimmune Dx
Seven years ago, almost to the day I had my first bout of bloody diarrhea. As I remember it, it came on suddenly - no gradual uptick in stools with less and less formation and more and more blood. Bam! I was sick and it stayed that way. It may have been gradual but I don't remember it that way. I do remember I had just finished a course of antibiotics for something. Acne? A UTI? I don't remember. But I remember I thought I was just being sensitive to the meds.
It got worse. (Or it always was worse from the beginning? Again, I don't remember.)Â I couldn't eat anything without getting sick. Anytime I put anything solid in my mouth, 30 minutes later it came out the other end not looking much different. I ate as little as possible for months. After any and every meal I excused myself and went to the lady's room. I was terrified that my coworkers would think I was bulimic. How frickin' messed up is that? I was terrified that other people would think I had an eating disorder but not by the fact I was slowly dying. And no one - not even me - could tell I was starving and hemorrhaging, because I was 22 and looked absolutely gorgeous doing it. 5'8", size 2, and sharp cheek bones. (I especially didn't look out of place next to my then-roommate who could have been a runway model if she hadn't gotten that PhD in chemistry.)
No one could tell, that is, until I went to my parents' house for Christmas. They saw me as skin-and-bones. They saw me unable to drive home from Christmas Eve dinner, bent in half, willing myself not to vomit in the backseat. They saw it happen again after Christmas Day dinner. That week, my mother returned with me to my apartment in DC, because she knew without her I'd delay going to the doctor even longer. My family doctor's nurse practitioner gave me a differential of IBS, IBD, or gallstones and a referral to a gastroenterologist. Since the specialist's office was in the same building, my mother and I walked up there. I tried to make an appointment, but the physician I had been referred to was booking new patients three months out. "You don't understand," I said, "I've been internally bleeding for over two months." I was close to tears; this was the first time I was admitting to myself and others that I was not okay and now I was being told I'd have to keep suffering for at least twice as long. The best the scheduler could do was get me in to see another gastroenterologist in just over a month. I took it.
I spent the next month just as I had the previous ones: not eating, in pain, and bleeding from the ass. My appointment date finally rolled around. The gastro took a detailed history, looked at my phlebotomy labs (all the indicators of inflammation), and diagnosed me with IBS, saying it was very common in women my age. He told me to keep a diary of my "trigger foods" and stress level. (Oh, btw, I am a stressed out person. I was a stressed out preschooler even. But the year of this first flare, I was the least stressed of my life - I had a great social life, I had an awesome apartment, I had a decent paycheck, and I lived just far enough away from my family that their neuroses couldn't rub off.) I did this and tried every diy miracle cure on the internet for IBS, but it didn't help. At the end of February, he finally did a colonoscopy.
I don't remember much of the post-procedure consultation except for being told I had Ulcerative Colitis. I was ecstatic with the news. While UC was a more serious condition than IBS, UC has drugs! It's not all, do yoga and stop eating fried foods! My mother, however, reports that the gastroenterologist started by saying how he expected to go in and fine no markers of disease, but instead found pan-colitis. (Strangely enough, and this becomes important when when reconsidering which type of IBD I have, my rectum was never involved, even when the entire large intestine was involved.) I was too inflamed for the scope to get into the ilium, and the doctor diagnosed me with Ulcerative Colitis.
Current Medical Team & IBS Dx
Fast forward three years, I moved away from DC and - after a short relationship with a mediocre gastroenterologist - I found a gastro at one of the country's most well-regarded research hospitals who only sees patients with IBD. I love Dr. Awesome, as I will call him here. He definitely follows a post-paternalistic theory of the practice of medicine and talks to me as a peer. He's called me from his cell phone after business hours to answer a question about my medication dosage. And I always feel like he listens. Crohnies, I wish you all could see Dr. Awesome.
BUT on top of my UC, Dr. Awesome has diagnosed my with IBS. Whenever my symptoms aren't severe enough to indicate active IBD, he has prescribed me antispasmodics and said it's IBS. On the other hand, my family doctor, who I will call Dr. Super (and I love a lot, too) and who gives me straight talk and asks for my perspective, has told me that if anyone ever tells me I have IBS, I should punch them in the face. (Really. He said that - I'm sure he wasn't being serious - but he said that in the exam room.) His rational is that IBS, by definition, is a dx of exclusion and one of the conditions that must be excluded is IBD. Since I very clearly have a history of IBD, in his view, I cannot possibly be diagnosed with IBS.
Two different great doctors, two different views.
Methotrexate
In April 2013, my colonoscopy should mild pan colitis with no inflammation in the end of the small intestine. In January 2014, I started weekly 25 mg injections of methotrexate. This medication made me feel ill for about 24 hours after the dosing (it's like an awful hangover - pounding headache, nausea, vomiting, body aches, fatigue) and then queasy for three days. But guess what, the pain paid off. In July 2014, my colonoscopy showed a perfectly healthy colon - first true remission in six and a half years. I thought I could stop the meds then, but Dr. Awesome said nope. His nurse described it to me like blood pressure pills - once you use the medication to regulate your pressure back to normal, you don't get to stop taking them. But, because I was loosing a not insignificant chunk of my week to mtx, Dr. Awesome let me titrate down until I could handle the meds. At about half the dosage, I had enough spoons to do what chores absolutely needed to be done on Sunday (grocery shopping and laundry) - a definite improvement to my quality of life over the killer hangover. About a month after decreasing, these pains started.
Current Condition
The pain I've been having recently has felt completely different than previous UC pain. It is not debilitating, but mildly distracting. Even though I wouldn't rate my pain high on the 1-10 scale, it isn't what I'd describe as vague, visceral pain. It's acute and specific, if intermittent.
(As I've mentioned elsewhere, in the past 6 months, I've had two bouts of absolutely crippling pain in lower center of my abdomen. I was sure this was endo, but my OB/Gyn didn't see any during the laproscopy and diagnosed the pain as IBS and prescribed antispasmodics. IBS, my ass. This is my body telling me something is seriously wrong)
I shared this with my gastro last week at my 3-month follow-up appointment. Rather, that is, I first told it to his fellow who did the initial history and physical exam before I saw Dr. Awesome. I'm a really good teaching hospital patient because I don't mind sharing intimate details with strangers or repeating things multiple times to different medical professionals. But by the end of my time with this Dr. Fellow (who, by his title, you already know is already a medical doctor, and a specialist in gastroenterology, at that) I felt ready to cry. Dr. Fellow probably had no idea how patronizing he seemed, but when I denied bloody stool or numerous bowel movements, he asked if I took any probiotics and if I was getting regular exercise. I could see where he was going with this (IBS, for those of you playing at home) and shut it down. "I recognize that I am not experiencing symptoms of a typical UC flare," I said. He nodded in agreement. I continued, "But I have had other symptoms which makes me wonder if I might actually be presenting symptoms of a crohn's flare." I went on to list them. (Particularly absurd, when I described a recent rash, which my PCP's PA diagnosed as an undetermined viral infection, Dr. Fellow asked me if I had been prescribed antibiotics.)
Dr. Awesome came into the room and, immediately, I felt like he actually listened to me and considered my symptoms and pain valid. He didn't suggest any drastic, immediate changes, but he developed a plan of action. I have to titrate back up on the methotrexate, even if it makes me temporarily sick over the next three months. If the pain lessens, we will know I had a bout of inflammation which has resolved. If it doesn't, he'll order a high-resolution CT-scan and have a look around.
I mentioned my crohn's theory, and while not unquestionably excepting my hypothesis, he explained that IBD is a spectrum. On one side there is textbook UC (descending colon resembles dog food) and on the other side there is textbook crohn's (inability to absorb nutrients because small intestine resembles dog food). He told me that most patients fall somewhere in the middle, leaning to one side or the other. He said that I'm in the middle, leaning to UC, because there's no evidence my ilium has ever been involved, but that does not mean that, on occasion, I might have some symptoms more often associated with the other side of the spectrum.
I no longer felt like crying out of frustration. I did feel like crying out of contentment. Seeing all your stories on tumblr makes me realize how lucky I am to have a doctor who listens to me. When I say something is wrong -- I-feel-it-in-my-cells-wrong -- he responds. My symptoms are valid and real. My pain is valid and real.
This is where I am now. Thanks for reading all that.
One of my health care practitioners recently suggested tht my abdominal pain and nausea was IBS and not an IBD flare because of the lack of bloddy stools (despite the fact the stabbing, gripping abdominal pain gets much worse after I eat /anything/ and I have painful bowel movements and that pain does not subside after). Today multiple canker sores poped up in my mouth and I have been extremely fatigued for two days. So, internet, are canker sores ever an indication of IBS? Or am I right to call bullshit on his dx?
I was overcome with nausea as soon as I got on the bus this morning. Taking a few moments to regain my composure by the fountain in the urban parklet before going to the office. #NotaNormalYoungProfessional #NotOkay #ButIWillBe
The film is about a young woman with cerebral palsy (played by Kalki Koechlin) whose exploration of her own sexuality includes a lesbian relationship. According to Maniyar, the idea was to create a lens through which viewers could look at people with disabilities without focusing on the disability itself. Families, caregivers and even organizations working for the disabled seldom deal with sexuality.
I had symptoms of a flare today while in a deposition. A deposition!
As an adult with a white-collar job, there are very few times where, due to the situation, I am not able to quietly excuse myself from a room and leave. I can get up and go, and there's really nothing anyone can do about it. It's not like high school where I have to raise my hand to ask permission to use the lavatory. It's not shift work where I have to find a replacement to man my post so I can take a break. Even so, I only exercise that option when I absolutely need to and I do not take advantage of the flexibility I am awarded.
But a time that I can't exercise the excuse-myself-option is a deposition. These events are scheduled weeks in advance to work with at least five different people's schedules. If you need to leave, even just for a minute, you must wait till the witness finishes answering the pending question and ask for a break. At that point the questioning must stop, the group goes off the record, and waits for your return before proceeding. Obviously, not ideal when you have to take multiple breaks per hour.
When the pain started, my side's witness was just beginning her testimony on the most important part of the case. If I asked for a break, I'd break her rhythm and ruin it. I sat there, very uncomfortable and hardly paying attention. Luckily there was a more senior attorney running point, so I was not lagging in my duty to represent the witness. If he hadn't been there I would have had to ask for a continuance, which - even if the other party had no disputes - would have been uncomfortable and awkward.
How am I supposed to do this job while having this disease? If I have these problems when my symptoms are mostly under control, what happens when it's a full on flare?
Hey Crohnies (lumping all IBDers under this descriptor):
Who has a axial arthritis/spondylitis/spondyloarthropathy dx? What did the lower back pain feel like in the early stages? Trying to determine if it's something worth bringing up or nothing at all.
Woke up with a mysterious blood blister on the back of my thigh (1/2" x 1/8"). I don't remember pinching it or other trauma and I injected my methotrexate in my belly last night. Is this an IBD symptom, a med side effect, or something that just happens to normal, healthy adults from time to time?
With all the ALS ice bucket challenges going around I thought this would be a good time to reflect on another way people can help fight terminal illness. At this moment, my uncle (mom’s sister’s husband) is in an OR undergoing a heart transplant. Due to the nature of this surgery, I am sure a great tragedy preceded my family getting a call that Uncle Bobby was next on the list and the hospital had a heart on the way. Somewhere out there there is a family grieving the loss of a loved one, but I hope they can find solace in knowing that that person was generous even after his or her death. Because of that person my uncle will likely get several more hopefully vibrant years of with his son, his grandchildren, and his wife. Save a life, be an organ donor.
That's my Uncle Bobby - seven days after modern medicine opened his chest, took his diseased heart out, and put a new one in - walking around. I love living in the future.
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