This past Monday, I called my latest gastroenterologist, lets call him Dr Chill, (because he is a cold fish and has no compassion at all) and let him know (or rather, his nurse/medical assistant know, because you never get to talk to the actual physician any more) that his sending me to an expensive gastro doctor at the UW Depart of Digestive Diseases (We'll call the UW gastro guy Dr Do-Nothing) only gained me a big bill and no treatment or help at all.
Dr Do Nothing had the gall to keep me waiting for 2 and a half hours after my appointment, and then breezing in, saying "sorry for the wait" as if it were nothing, and then telling me that I had 5 choices for dealing with my Crohns Disease, the first of which was to "Do nothing" as if I would waste all that time and money spent for parking, for the visit itself (I don't have insurance, so it is all out of pocket) and for the time my husband had to spend taking me down to the U District and sitting in the waiting room trying to do his job from his laptop for three hours. It just boggles the mind that Dr DN could be so condescending as to think that doing nothing was actually an option. After all, doing nothing is all that has been done for my Crohns for the last 5 months, and my disease has gotten progressively worse, to the point where my quality of life has gone down the toilet as rapidly as the contents of my colon. Being sick and in pain all the time doesn't allow you to do the things you need to get done everyday, and it hampers my ability to do even simple things, like grocery shop or go to the gym, or meet with friends for tea. My life diminishes to the 50 square feet that is the bathroom, where I watch the minutes and hours tick by when I should be sleeping, or making a meal for my family, or a dozen other things.
So initially Dr DN said that he still hadn't gotten my medical records from Virginia Mason and Dr Chill, though I'd been told that they were sent over 5 weeks before. So Dr DN glibly said that I might have to wait another 2-3 weeks for my medical records, specifically my EKGs, to come all the 2 miles across town from Virginia Mason Medical Center to the UW Dept DD. When I tried to explain that this was ridiculous, that they could FAX or email or even courier over the records, Dr DN said that I needed to call and light a fire under the VM people to get the files to him ASAP, so he could see if I would be able to be in a study of his for a new drug for Crohns. So I called VM, they sent over the information, and Dr DN wasted no time in pronouncing me unfit for any of his new drug studies, all because my heart has a slightly irregular beat sometimes, and otherwise beats slowly and is healthy, because I exercise and am not hypertensive at all, (no high blood pressure or blockages) despite my weight. So Dr DN threw me back to Dr Chill, saying that I was once again his problem, since the UW couldn't help me with any treatments or studies. Great. So now I am supposed to return to a Dr who has kept me off of medications for 5 months, not allowed me to take strong pain pills and watched me wash out of a VM study because of my heart, and then just lobbed me off to the waste of time at the UW, all while knowing that my Crohns has gotten worse and I've been in pain for months, while he does diddly squat to alleviate any of the symptoms? This is also a doctor who gave me the most painful colonoscopy I've ever had, and who has repeatedly told me that I need to move to Canada or the UK because I don't have health insurance here (no one will ensure me because of Crohns as a pre existing condition) and they have national health in Canada and the UK. Like it is just that easy to uproot your family and move to another country!
So I decided to go back to my previous gastro doc, we'll call him Dr GG, for Good Guy, because he was the only gastroenterologist I've had in the 13 years since my diagnosis who has actually cared about my health and treated my symptoms and managed my pain when in flare. Unfortunately, Dr GG is a part time physician who is only at VM Issaquah once a week, and he takes numerous vacations, so he wasn't able to see me until July 5! When I explained to the nurse/receptionist that this wasn't acceptable, and that I've gotten nothing from my 5 months with Dr Chill but bills and more bills and no treatment or relief from the symptoms of worsening Crohns, she said she would tell him about my plight and see what happens.
So in the past 48 hours, I've gotten three phone calls from Dr GG's office, where his nurse apologized for all I'd been through, and told me that Dr GG would like me to see a specialist gastro doc in Bellevue on June 7, so that I can hopefully get some relief before I go back to see Dr GG on July 5. Then she called today and said my appointment with Dr GG was moved up to June 28, so we're making progress on the relief front! Waiting three weeks is certainly better than waiting 8-12 weeks, so I am calling this a win for being the squeaky wheel that gets the appointment.
While I'm still far, far away from my goals of getting to a lighter weight, I feel like once I get my Crohns under control, I will be able to attempt an eating plan that makes sense for me, one where I can use my new juicer to get more nutrition from veggies and fruits that I can't eat raw or cooked without a flare. Keep your digits crossed for me, Upholstered Belly fans!
Wednesday, May 15, 2013
Thursday, April 25, 2013
Recycling This Blog With a New Name and Focus
Hello Crohnies and overweight, fluffy or fat friendly friends everywhere!
I've decided that instead of leaving this blog fallow, I will repurpose it as a blog about my struggles with Crohn's Disease, which I've had for over 13 years now, and my weight and sense of self acceptance.
Currently, I'm not taking anything but Azithioprine (and only a half-dose every other day) as treatment for my Crohns because my previous Dr, Doctor Lord at Virginia Mason, tried to get me into a Glaxo Smith Kline drug trial/study, but was unsuccessful because my heart is too healthy and I am not incapacitated by my weight.
So he's referred me, after 3 grueling months of blood tests, colonoscopies, EKGs and multiple visits to the Virginia Mason Hospital and Clinics located in downtown Seattle (which is really tough to drive in these days, because of traffic revisions and upgrades and other DOT insanity) to the University of Washington Department of Digestive Diseases and Dr Scott Lee, who is supposed to have a different drug trial that I can become a part of, hopefully.
Still, because I couldn't enter the GSK drug trial while on medication, I've been 4 months now without any substantive treatment for this painful gastroenterological disease. Which basically means I've been spending a lot of time in the bathroom for the past several months.
April has been a tough month in particular, because I haven't been without medication for this long in 13 years, so while the Crohns has spread down to my descending colon and my rectum, it hasn't been that painful since 3 years ago when I had an operation to remove a stricture from the juncture of my colon and small intestine. And the last time I was sick so often was when I was pumping breast milk for Nick after he was born and I kept having to run to the bathroom every time I used the hospital pump they sent home with me.
I honestly think I'd been having Irritable Bowel Disease symptoms for about two years prior, but I just hadn't found a doctor who knew how to diagnose IBD. From what I have heard and read, this is fairly common among the Crohns and Colitis community, and some people spend 5 or more years going from doctor to doctor trying to figure out why they are so sick with stomach/intestinal pain, diarrhea, bleeding and rectal fistulas and fissures (and hemorrhoids). I spent two or three months once in 1998 drinking some kind of stomach coating mixture because I couldn't swallow or eat anything more solid than babyfood and keep it down. Xrays revealed that my entire digestive tract, from my esophagus on down looked like it was wrapped in white cotton batting. I think that was my first true Crohn's flare.
Anyway, I'm still fighting to have a life in between running to the bathroom, and I've paid particular attention to doing the things I need to do for my husband and son, Nick. I also try to keep in contact with friends and relations via Facebook, and I try not to stress about things like the horrible terrorist bombings in Boston on April 15, last week. I try not to watch the news or read too many sad books, and I rely on my hopeful friends to keep me feeling like I can conquer anything, given enough time and determination.
I have been struggling to keep my exercise schedule, going to Thrive, a local gym (WIO closed down last June, which still makes me sad) at least 3-4 times a week. Now that there is a new Spin With Lynn class going, I try to ride the ridiculously uncomfortable stationary bikes Thrive provides, though recently my sore and aching rear end just would not cooperate, and I had to bow out of Sunday's spin class, much to my sorrow. Because Humira and Cimzia, both injectable biological drugs that I was on for Crohns, seemed to react in my body like a steroid (cortical, not anabolic), I gained back all the weight that I lost back in 2009, and now I am back to my heaviest, the weight that I was when I was pregnant with Nick and that I maintained after he was born via c-section. Then when I joined Work it Out in 2006, when Nick was 5 years old, I'd started to lose weight again and gain muscle tone and strength.
But I fight on, determined to not let my size or my IBD get the better of me, or keep me from being mobile and healthy as possible.
I hope that you will share my journey with me. You are welcome to sit down and have a nice cuppa tea and read.
I've decided that instead of leaving this blog fallow, I will repurpose it as a blog about my struggles with Crohn's Disease, which I've had for over 13 years now, and my weight and sense of self acceptance.
Currently, I'm not taking anything but Azithioprine (and only a half-dose every other day) as treatment for my Crohns because my previous Dr, Doctor Lord at Virginia Mason, tried to get me into a Glaxo Smith Kline drug trial/study, but was unsuccessful because my heart is too healthy and I am not incapacitated by my weight.
So he's referred me, after 3 grueling months of blood tests, colonoscopies, EKGs and multiple visits to the Virginia Mason Hospital and Clinics located in downtown Seattle (which is really tough to drive in these days, because of traffic revisions and upgrades and other DOT insanity) to the University of Washington Department of Digestive Diseases and Dr Scott Lee, who is supposed to have a different drug trial that I can become a part of, hopefully.
Still, because I couldn't enter the GSK drug trial while on medication, I've been 4 months now without any substantive treatment for this painful gastroenterological disease. Which basically means I've been spending a lot of time in the bathroom for the past several months.
April has been a tough month in particular, because I haven't been without medication for this long in 13 years, so while the Crohns has spread down to my descending colon and my rectum, it hasn't been that painful since 3 years ago when I had an operation to remove a stricture from the juncture of my colon and small intestine. And the last time I was sick so often was when I was pumping breast milk for Nick after he was born and I kept having to run to the bathroom every time I used the hospital pump they sent home with me.
I honestly think I'd been having Irritable Bowel Disease symptoms for about two years prior, but I just hadn't found a doctor who knew how to diagnose IBD. From what I have heard and read, this is fairly common among the Crohns and Colitis community, and some people spend 5 or more years going from doctor to doctor trying to figure out why they are so sick with stomach/intestinal pain, diarrhea, bleeding and rectal fistulas and fissures (and hemorrhoids). I spent two or three months once in 1998 drinking some kind of stomach coating mixture because I couldn't swallow or eat anything more solid than babyfood and keep it down. Xrays revealed that my entire digestive tract, from my esophagus on down looked like it was wrapped in white cotton batting. I think that was my first true Crohn's flare.
Anyway, I'm still fighting to have a life in between running to the bathroom, and I've paid particular attention to doing the things I need to do for my husband and son, Nick. I also try to keep in contact with friends and relations via Facebook, and I try not to stress about things like the horrible terrorist bombings in Boston on April 15, last week. I try not to watch the news or read too many sad books, and I rely on my hopeful friends to keep me feeling like I can conquer anything, given enough time and determination.
I have been struggling to keep my exercise schedule, going to Thrive, a local gym (WIO closed down last June, which still makes me sad) at least 3-4 times a week. Now that there is a new Spin With Lynn class going, I try to ride the ridiculously uncomfortable stationary bikes Thrive provides, though recently my sore and aching rear end just would not cooperate, and I had to bow out of Sunday's spin class, much to my sorrow. Because Humira and Cimzia, both injectable biological drugs that I was on for Crohns, seemed to react in my body like a steroid (cortical, not anabolic), I gained back all the weight that I lost back in 2009, and now I am back to my heaviest, the weight that I was when I was pregnant with Nick and that I maintained after he was born via c-section. Then when I joined Work it Out in 2006, when Nick was 5 years old, I'd started to lose weight again and gain muscle tone and strength.
But I fight on, determined to not let my size or my IBD get the better of me, or keep me from being mobile and healthy as possible.
I hope that you will share my journey with me. You are welcome to sit down and have a nice cuppa tea and read.
Subscribe to:
Posts (Atom)