Eighteen-year-old Jessica Terry, brought slides of her own intestinal tissue into her AP science class and correctly diagnosed herself with Crohn’s disease.
“It’s weird I had to solve my own medical problem,” Terry told CNN affiliate KOMO. “There were just no answers anywhere … I was always sick.”
For years she went from doctor to doctor complaining of vomiting, diarrhea, weight loss and stomach pains. They said she had irritable bowel syndrome. They said she had colitis. They said the slides of her intestinal tissue were fine, but she knew that wasn’t right.
“Not knowing much about a disease you’re growing up with is not only nerve-wracking, but it’s confusing,” Terry told theSammamish Reporter.
So when local pathologists stopped in to teach students in her Biomedical Problems class how to analyze slides, the high school senior decided to give her own intestines a look.
What she found? A large dark area showing inflammation, otherwise known as a granuloma–a sure sign of the intestinal disease.
To confirm her suspicion, she checked in with her teacher.
“‘Ms. Welch! Ms. Welch! Come over here. I think I’ve got something!” she shouted.
Mary Margaret Welch, who has spent 17 years teaching science at Eastside Catholic School, had a feeling Terry was on to something.
“I snapped a picture of it on the microscope and e-mailed it to the pathologist,” Welch said. “Within 24 hours, he sent back an e-mail saying yes, this is a granuloma.”
The finding impressed doctors.
“Granulomas are oftentimes very hard to find and not always even present at all,” said Dr. Corey Siegel, a bowel disease specialist at Dartmouth-Hitchcock Medical Center. “I commend Jessica for her meticulous work.”
While Terry’s glad to finally have answers, she now knows she’ll have a tough road ahead.
Crohn’s disease is an incurable, though treatable condition caused by inflammation in the intestines. It can cause malnutrition, ulcers, pain and discomfort.
Still, she looks towards the future with optimism. She’ll begin nursing school in the fall and hopes to have a kid’s book on Crohn’s disease published.
Why does this not surprise me? June 16, 2009
monday morning blues June 15, 2009
Monday morning blues…So much to do, but I’ve got the flu.
A Tale of Two (or 3) Doctors June 11, 2009
“It was the best of times, it was the worst of times…” -Charles Dickens
It has been a while since I wrote of my medical stuff. Probably some sort of psychological avoidance issue. Or possibly because of the amount of time that I have been dealing with it of late, the last thing I’ve been wanting to do is write about it. But there have been some new developments so I feel obliged to share them.
As soon as I was adequately recovered from the last angiogram, I began intensive work with my chiropractor-2-3 times/week. The work was hard, deep and usually left me feeling pretty crappy for the next day or so. The good news was, that we were seeing some definite, although not permanent, improvement. We at least felt that we had honed in on the root of the trouble. The bad news was that we weren’t really sure what she was doing that seemed to help and if her work would/could have any permanent effect.
Also, my last 2 doctors, neither of whom do I respect (see May 21 post “A Bitch of a Week”), suggested that my problem was caused by my pain medicine and not the other way around. Although this seemed completely illogical to me, I was so desperate, that I think I was open to hearing just about anything. So, when they suggested I get off my pain meds, I was at least willing to give it a try. My fear was, what if I get off the meds and the pain is still there only now I get no relief, have no safety net? That concerned me, especially since getting off the drugs is a long drawn process which need to be undertaken with great care so as to avoid or at least ease withdrawal, which can be a very painful experience on its own. Also, neither of these doctors told me how I should do the withdrawal and neither referred me to another doctor who specializes in helping people wean gently off of narcotics. I was, yet again, alone in my journey.
So, I started calling around to different clinics or programs that were designed to help people kick their drugs. Only problem was, I wasn’t nor am I a drug abuser. Evidently one has to be a hard core addict or as rich as Miss Lohan or Spears to get any help. I was told point blank by 2 different admissions directors that they weren’t the place for me because I am simply dependent on my medicine to feel well, not addicted in order to get high. Damned if you do, damned if you don’t. I did speak with one facility that would have happily helped me to part with a great deal of my money for the privilege of spending 28 days away from my family, attending NA meetings, etc.
Surprisingly, my playing around on the web landed me right at the internet doorstep of the most amazing perfect e-match of a doctor that I could imagine. Her website described someone who was the doctor equivalent of tall dark and handsome. Dr. Gayle was western trained and she is an M.D. Her field of specialty was gastroenterology (a girl after my own spleen), and internal medicine, but she had also studied with a medicine man on a Native American reservation and she became open to other ways of healing. She then learned about other healing modalities and now runs a completely integrated practice. She is well known in her profession and highly respected. She treats the body, mind and spirit as a whole and considers herself a partner with the patient to figure out a way to health and wellness. Imagine that! AND her practice is about a 20 minute drive from my house.
I called her office and was able to get in last Tuesday. And what happened next was truly amazing. We sat, I spoke, she listened. She took some notes and asked a few questions, but mostly she just listened. And then she stated quite simply and matter of factly, that she had a pretty good idea about what could be causing my pain. Just like that. At the end of our meeting she looked me directly in the eyes, put her hands on my arms and said, “We will figure this out.” And I believed her.
We all have a very large muscle that runs up the length of the torso, connecting at the hip and up near the diaphragm (the very diaphragm from where the median arcuate ligament was cut in my original surgery), called the iliopsoas muscle. Her thinking (which was confirmed on examination) is that this muscle has been in chronic spasm since the surgery, likely as a result of the body trying to protect itself from the trauma of the surgery. She said that it would account for all of the pain that I have described to her-the squeezing inside my body, the wrapping, the burning-all of it (other than the normal aches of being a grown up and having 3 kids and living in a stressful world). But not only that, she actually has a plan for dealing with the muscle. She told me that we have to break the cycle of the spasm and re-teach the muscle that it doesn’t need to be that way-that it can simply relax now. Not only that too, but she has a plan for breaking the cycle and that is through the use of magnesium injections which cause muscles to relax.
So, last week I had my first injection. I won’t say it was a pleasant experience, because it wasn’t, BUT at the end of the treatment, my pain was gone–GONE!. And for the nest several days I woke up without pain. It was truly amazing. She wouldn’t venture to guess how long the relief might be, planning several more injections-once a week for the next month and we’ll take it from there. I still take my meds because A. I can’t just stop them and B. there is no expectation that one shot is enough. In fact as the week has gone by, I have felt some pain creeping back in, but I am taking much less medication than I was even a week ago. I am scheduled for another injection this afternoon.
It’s too early for me to claim victory-way to early, but for the first time in a very long time, I actually feel hopeful…
More to come.
daunting task May 29, 2009
There are a stack of envelopes sitting in the corner of my office calling my name, beckoning me to open them. The task of doing that is hanging over me like a college term paper. Do you ever have a chore to do, a call to make, an errand to run, that feels so onerous that you find anything and everything else to do in it’s place? You know that the idea of tackling it is worse than the thing itself, and that if you actually do it, you’ll feel better, but still you procrastinate? That is how I feel about this task. The envelopes fall into two categories-EOB’S(explanation of benefits) from my insurance company and bills from my doctors and hospital and diagnostic centers. The task it to match the EOB to the bill, like one of those matching games where you match the hat to the job, i.e. baseball cap to baseball player or firefighter hat to firefighter that we used to do in school or in those kid’s magazines, only not nearly as much fun. Then part 2 is to pay the bill.
Here’s the thing. The task is certainly easy enough. The problem is that I don’t want to do it for 2 reasons. First, opening the bills and EOB’s just reinforces the reality that I live in daily pain. Second, as I described in an earlier post that my pain is like a bad child-whining, demanding of my time, sucking my energy, but also demanding of a great deal of money, money that could be used for so much more joyous purposes, like a family vacation, or college for my kids, or summer camp, or our eventual retirement or for causes more needy than us. But unlike my real children, I get no rewards from this one, no baseball games or dance performances, or delightful thoughts, or spontaneous hugs, or unconditional love. This child takes me away from my real children and that fills me with resentment many days. I have tried to come to terms with this part of my existence and much of the time I am at peace with it. I know I have it better than many. I also have no intention of giving up the battle to destroy this little demon. Like any true Red Sox fan, I do feel pessimistic at times, even with a four run lead, but like any good Red Sox fan, I do continue to keep the faith that I will prevail in lifting this curse. I just hope I don’t have to wait 86 years. I don’t have that long.
a bitch of a week May 21, 2009
I had a plan. I had a whole week’s worth of posts about bitches. So much for plans. I have had doctor appointments every day this week up until today. The first one was on Monday with a the director of digestive medicine at one of our BIG local university hospitals. He shall remain nameless. What a waste of time. Rather than explain, I shall post a letter I wrote to him the next day. It pretty much explains the outcome of that appointment. Tuesday and Wednesday were spent with my wonderful chiropractor who beats me to a pulp, but could possibly be the only person out there that is actually helping me. Only thing is that after she works on me I feel pretty lousy for the next 24 hours. So I have not written this week since Monday’s post because, quite frankly, I have been exhausted and just plain old not feeling like writing. Oh, and the wonderful doctor put me on yet another pill which had me feeling like I had just drunk a six-pack all day yesterday. No more of that for me. One bright light in all of this is that I have found a new doctor that I am seeing next week, a doctor who has a background in western medicine, but has studied eastern and Native American healing practices and takes an integrated and holistic approach to healing. I am hopeful that she will be a turn in the road for me.
Following is the letter that I wrote.
I came to you Monday against my better judgment at my husband’s insistence because you are supposed to be the best. I have been to countless doctors, and went with the slim hope that, in you, I would find someone different, someone who would listen, really hear me and help me to put my trust in you. That outcome did not occur.
What I got instead was a bright eyed intern with no experience, to take notes on my story, not history, mind you, but story, one of for my family as well as for me for 2 1/2 years. She then, through her own filter, told you details of that story. Based on that you made several diagnoses. While you insist that you “got” my story, that is, frankly, impossible and for you to insist, is arrogant. More importantly, when I agreed to the appointment, I expected to see you, renowned “Director, Digestive Disease Center,” not a student. I am NOT a textbook to be studied by a student. For that, I am angry that I wasted my valuable time and money.
To begin, you stated that my surgery 2 years ago, was likely unnecessary. What possible good could come out of you telling me that at this point? To further decrease my trust in doctors, in whose hands I put my trust and very life? To tell me that I needn’t have suffered these past years? Furthermore, based on what evidence can you even make this claim? You have not seen any of the tests used to make my diagnosis. You did not see or examine me at the time. You do not know that the pain with eating did, indeed, disappear and despite the fact that I was left with ongoing pain, it was of a different sort, perhaps, even likely, caused by the surgery itself, the very surgery that may indeed have been needed. There is countless documentation that surgeries lead to adhesions which can cause many complications including pain, as well as other problems such as damaged nerves.
I had no choice but to resort to as my doctors all told me they had no idea of the cause of my new ongoing pain. Not one of my doctors EVER mentioned adhesions. The pain that I have suffered for 2 years, the squeezing, wrapping, contracting, burning pain, which was only relieved by narcotics and neurontin could be caused by what then? The pain that only began after my surgery, the pain that was and is like nothing I have ever felt before.
Perhaps now, at this point, your diagnosis is correct that the medications have made things far worse for me, but that does not change the pain that had been with me since the surgery, the pain that had nothing to do with the original , the very reason for taking medication in the first place.
You, like many others, sent me off with your certain diagnosis, a slip of paper for more drugs, and taught your intern that that is the way to practice medicine. Why should I trust or believe you any more than all the others? You offered to me no support in the way of finding a doctor to help me with the next step, despite the fact that you say you have had other patients in the same position. You have left me, feeling vulnerable, to again, on my own, navigate the world of doctors out there to try to find one to assist me with the withdrawal. I have been doing this for 2 1/2 years. Doctors seem to give you their opinion and then send you on your way. It is shameful.
When I tried to call you to follow up with further questions, you were short and dismissive. You certainly have done nothing to build patient/doctor trust to allow me to feel that taking the step of withdrawing from my medicine is the right thing despite the obvious anxiety that any patient would feel given this information. You were quick to inform me that you are not my psychiatrist. That is for certain. I would never consider going to a psychiatrist with such a dismissive manner as your own.
Despite my negative feelings for you, I am willing to and planning to take your advice to at least see where I am without the medications, as my own research has confirmed some of what you have told me and because I am desperate to have my life back to be a mother to my 3 children. By the way, you did not even acknowledge my 3 1/2 year old sitting so patiently in the room with us.
Be advised, however that I have already made appointments with 2 other doctors and that your services will no longer be needed by me. I hope the young lady that you taught that day has other, more compassionate doctors to study under and she learns more from them than from you.
I do not expect a response to his, because honestly, I’d be surprised if you even read this far. I’m sure you never hear this from patients because they are taught to believe that doctors are gods, however, you are human, and fallible. I do, once again, feel like the medical system is failing its patients, certainly this one. With each doctor visit, my already low trust is further reinforced.
With deep disappointment,
bruno says May 13, 2009
My friend’s dog, Bruno, wrote this. It’s very insightful for a pooch (or even a human, for that matter). I have permission to use it.
Pain is like doody.
Whilst you appear to be moody,
and a pain in the booty or perhaps
The world moves on and you try to keep up,
and our pain just like the doody we try to scoop up.
For moments, maybe hours, the pain goes away.
Then a meal or a walk or a game you might play.
But shit! The doody’s back the very next day.
So we fight it, we wipe it, we clear it away; this pain
just like doody that gets in our way….
Keep moving, keep doing, the experts all say.
So easy for them in a 10-minute co-pay!
Removed they all seem from the pain that is ours,
until it is theirs and their own demeanor sours.
A club of shared soreness we did not seek to join,
with nausea and headaches and immoveable loins.
Pain is like doody as it just does not care.
We wipe it, we clean it and next day it’s there.
Signed- A k9 with arthritis.
my very own special pain part 3 May 5, 2009
So, part 2 ended with me in Florida, getting manual treatment for my adhesions. The treatment seemed to help so I was cautiously optimistic, but not exactly hopeful. Even before returning home, I began to reduce some of my pain medications. This must be a careful process or a person endures withdrawal symptoms. Even with a very slow reduction, symptoms can and did occur with me. I understood them and was able to deal with them, although with difficulty and discomfort, knowing that my goal was to get off the medications. Before leaving Florida, the head of the clinic met with me and explained that she thought I could use another 8-10 hours of therapy. I knew she wasn’t just trying to elicit more business as I agreed with her that they had helped me about 70%, but that more work would be needed to get to 100% relief.
As I reduced my medications, a new development occurred. I began to notice the old stomach pain that came with eating that began this unfortunate journey. I went back to my vascular specialist for an ultrasound of my celiac artery. Bad news. It had, in medical jargon, restenosed. In laymen’s terms, it had closed back up 75% due to normal tissue that grows over stents. So now I was back to square one only worse.
I went to another surgeon, one of the heads of UCLA vascular, for a second opinion, and he concurred that another angiogram was warranted to open the artery again before going to the more invasive bypass. So, a week later, there I was back in the O.R. for a 1 1 /2 hour procedure that lasted 4 1/2 hours. It turned out that they were using a laser to “clean out the tissue” and the machine kept overheating. So much for state-of-the-art technology. Also, for some reason the nurses didn’t know how to use this particular machine so my surgeon, while doing his part, also was training the nurses. Great. So, a long procedure, 2 hours flat on my back after, and then unbelievable nausea after for about 2 more hours. Finally I was sent home feeling like death warmed over. As a precaution to help prevent restenosis this time, I was prescribed steriods for a week (no professional baseball for me, I guess) which made me sick to my stomach so my recovery was very difficult. I was also put on Plavix (a blood thinner), which produced a very itchyrash covering about half of my arm. So that was about 6 weeks ago. The artery is now open, the pain after eating is gone, but I still have squeezing and burning pain that is due to the rest of the adhesions that need more work. However, I need to wait about another 5-6 weeks since that is deep work and my physical therapist wants me to be completely healed from my surgery before doing more work.
As my remaining pain is low in my belly as well as in my back, I wanted an abdominal x-ray to make sure that my adhesions weren’t causing any intestinal blockage. I got my doctor to order one and then fired him since I think he is a complete hack. The last time I went to see him, he didn’t even examine me, just insisting that any and all problems I was having were due to my taking pain medications and dismissed any other possibility. While they can cause digestive problems, I am certain that this is not the primary problem. I know my body and so far in all of this I have been right, and many of my doctors wrong.
While having the abdominal x-ray a couple of weeks ago I told the technician about my condition and how I got to be in this predicament. She understood completely because she was suffering a similar problem due to a pelvic surgery she had in the past. Her first doctor wanted to cut her wide open top to bottom and she was in so much pain and so doped up that she almost let him. Her boyfriend strongly suggested that they get a second opinion and sure enough she ended up having a much less invasive procedure. Nonetheless, she did have some adhesions that likely would have been much worse with the first doctor’s plan. She said something that really resonated with me. She said, “you know, we were taught to believe that doctors are gods and that we should not question them.” I think doctors are taught to believe the same. What I have learned is that not only are doctors not gods, but many of them really don’t have any idea, especially when it comes to complicated cases. In fairness, they are at the mercy of insurance companies who leave them little time to make proper diagnoses, but still…I have also learned that they don’t want to admit that anything they do might lead to more problems (adhesions) and that specialists don’t talk to each other. Patients must be our own advocates and ask lots of questions and be very sure about what options are available to us and what possible risks exist. The patient is the consumer and our bodies are the most important things we have. We owe it to ourselves to hold our doctors to the highest level of excellence and when we are dissatisfied, we must find other doctors.
To get back to the 2 sentences that began the post, “My Very Own Special Pain Part 2.”
“she should have undergone vein graft bypass by a serious vascular surgeon
with release of the Arcuate Ligament as her inital surgery.
now she is a chronic pain patient and the likelihood of an easy fix is near 0″
I did have a “serious vascular surgeon,” a renowned doctor with UCLA. He, along with others, felt that the procedure he did was a necessary first step, a less invasive procedure than a graft bypass and that it was worth doing first because if it gave me relief, it would prevent the very invasive bypass. It was the right call as it is always better to try more conservative treatments first, and for my former college mate (a trauma surgeon, not a vascular surgeon) to make this call now is not only not helpful, but completely pointless, seeing as this is 2 1/2 years after the fact. My adhesions would likely have developed regardless of the procedure that has left me with such pain as they are both abdominal surgeries. Also, to presume to make a diagnosis or procedural call without even examining me and looking at all my diagnostics, is, at the very least, irresponsible. I know that “the likelihood of an easy fix is near 0” as I have already been at this for 2 and a half years. ARGH!!!!
So that pretty much brings you up to date. My primary pain is due to adhesions low in my abdomen in my intestinal area. The meds I take and the adhesions can cause digestive difficulties and I won’t go into details here. Suffice it to say that sometimes I don’t feel very well from that too. And sleep is very elusive. Some days I sleep pretty well, other days like shit.
I have a wonderful chiropractor who does so much more than adjust me. She works from a very wholistic perspective and she helps me think through my situation. She has known me for years and been with me through all of this. The main thing is she listens. I also have been getting healing work, massage and energy healing from my sister-in-law, which is also beneficial. Ice packs, my heating pad and my massage chair are my friends. I take more pills in a day than I care to count. I used to the the kind of person that wouldn’t even take a Tylenol for a headache. It is disturbing how quickly and drastically things can change. The cliche is true that if you have your health, you have everything.
While this is all very physically difficult, our physical, emotional and spiritual beings are innately interconnected and the emotional toll is immeasurable. The last time I saw my pain guy, he asked me if I have been moody. Moody? That is an understatement. Some moments I feel ready to fight this thing to the end and other moments I feel like throwing in the towel. And it isn’t day to day, it is truly moment to moment. As I mentioned in part 2 of my story, chronic pain is isolating and depressing and it bears repeating now.
The main thing is that chronic pain takes away a part of who I am, a dependable, reliable, get-things-done kind of person. It also sucks a lot of my energy. It has forced me to re-think everything and I am o.k. with that, but I am not o.k. with not being that person who is available to my kids and my friends and family. It breaks my heart when my 3 year old asks me, “mommy, how did you get so sick?” and “I know your back hurts now, but when your medicine kicks in, you’ll be able to play with me.” These are thoughts that shouldn’t even be in her little 3 year old brain.
Those who live in Los Angeles are familiar with the phrase that goes at the end of every sentence describing how long it takes to get somewhere. That phrase is “depending on traffic.” I have a similar phrase when someone asks me to make plans or my kids ask if we can do something, I always have to respond, “it depends on how I feel.” I want nothing more than for that phrase to be a distant memory in my life.