A Great Loss In Patient Advocacy

This is well overdue, but on March 22, 2013, Arijit Guha of PoopStrong.org passed away. He passed peacefully in the presence of loved ones. His wife has memorialized him beautifully in her own post on the Stage IV Hope blog, and I hope you will take the time to visit. It takes immense strength to stand by the side of someone you love while they suffer. Arijit was not only an invaluable patient advocate, successfully combatting the higher-ups at Aetna in a tense Twitter show-down, he was also a loving husband to a loving wife.

I have never met Arijit or Heather, but in following their story and through my brief e-mail interactions I find they have both set the standard for bravery and strength. Please do take some time to read through Stage IV Hope. Together they faced fear with love instead of anger. The world is a better place for having had him in it.

Visual Aids

Remember when this blog first started and I  tried to always post pics of things my poop reminded me of? Well, I do and I want to start doing it again. Today's poop looked like grubs to me. Now you know.

It's been a while since I've checked in, and I regret that. I know this isn't the most heavily-trafficked blog, but I still enjoy populating it. It's been an interesting few months of improving GI symptoms, mental/emotional ups and downs and readjusting to a new home, new cats and no job. I'm lucky enough to have disability coverage and insurance through March, but after that it's going to be a scramble to get my meds paid for. It has been incredibly strange taking disability leave over post-fire stress instead of something actively physical like colitis. I've been seeing a really supportive and soothing therapist in my time off, but the big take-away is that my resentment and loss will be something I'll have to deal with for the foreseeable future, and knowing me that means forever. I need to learn to manage those feelings and not let them debilitate my brain function. It's intimidating thinking of starting a new job up here because I want to give my best performance and care about what I'm doing.

Returning to the topic of my bowels, I've been steadily improving. I've even been sneaking some coffee in when J's having some and it hasn't blown up in my face yet. OK, yes, my poop should not be short and grub-like, but I'll take it over the runs. I've been taking fish oil and calcium with D supplements, which I think are helping both my butt and my mood. I've discovered two recipes on Pinterest that I think have been good for me: "Almond Joy" oatmeal and banana "ice cream." The oatmeal is quick-cook oats made with almond-coconut milk (or any milk you like) as directed on the oats container. Then mix-in dark chocolate chips, shredded coconut and sliced almonds. I hate breakfast, but this appeals to me. The banana treat is just frozen over-ripe bananas, tossed into a blender with the milk of your choice (again, I used the almond-coconut from Blue Diamond). Add a little of the milk at a time so you can judge the consistency until you get it where you want it. Then toss in some chocolate chips, pulse it a few times and boom. Put some whipped cream and a cherry on top and it tastes like you're eating a banana split. Bananas are binding but not always appetizing to me, so this is a great way to get them into my diet.

 Gross-out humor, a diary entry, and two recipes, all in one post. I feel so accomplished!

Image Source: mnn

Awestomy!

I spend a lot of time mocking the (mis)targeted ads in my Facebook sidebar, but today they put me on to an amazing product - Awestomy apparel. I don't have an ostomy myself (not yet, at least) but I think anyone with bowel problems can relate to feeling less-than sexy and needing a little boost. I love the idea of fun, sexy undergarments for ladies with ostomies. Oh, and HUGE points for a great pun.

Progress

So today was the day! I sent an e-mail directly to the GI I was trying to get in to see last week, and on Monday I received a call from her nurse. She was incredibly nice and apologetic about the trouble I've been having trying to get established as a new patient, and helped me get in to see a different doctor than the one I was scheduled to see. We met this morning, and it went...okay.

Pros:

Everyone I've dealt with at the medical center so far has been really cordial and has had excellent bedside manner. This is not as easy to come by as you might hope.

Very timely appointment. I didn't have to wait long to be taken to the exam room, or to see the doctor.

The doctor himself was nice, and easy to talk to. I was able to speak frankly about my symptoms, things I sometimes do to self medicate (wink) and didn't come away feeling judged. He made it very clear that I am welcome to call if I have any pressing concerns between now and my follow-up.

Cons:

The physical part of the exam was the equivalent of kids playing make-believe. I'm used to giving several deep breaths while my GI listens to my heart and lungs, then having my abdomen palpated to check for tenderness. What I got this time around was a brief graze over my heart and gut with the stethoscope, without even lifting the heavy sweatshirt I was wearing. It honestly lasted two seconds. I guess better brief than overly-thorough (meaning I'm glad there was no rectal exam.)

I asked for prescriptions, expecting to be handed paper copies to bring to the pharmacy next time I need to re-up. The conversation went on after that, so I didn't realize I hadn't been handed them until I was halfway out the door. I did have a page with my exam notes on it, and saw that the scripts were listed there. I went back to the front desk to ask if I was supposed to hand this to the pharmacy (and only later noted they had the wrong pharmacy listed, even though I had specified my preferred pharmacy with the other front desk clerk when I arrived.) She told me I was meant to call them to have them call the pharmacy when I needed my meds. It was confusing, but I was not in "self-advocate" mode today and decided to walk away and deal with it later since I don't need any of my meds for another month.

My previous GI sent my records, but they failed to make it to the doctor's hands before my appointment. I overheard one of the nurses say it was her bad, and I appreciate that she admitted it. Not a big deal, really, but I suspect having them prior to meeting would have made the appointment more productive. One of the issues I have with this health center in general is that they seem to have too many people going at once - too many chefs spoiling the pot, as they say. Instead of making things more efficient and effective I find it mostly causes confusion and miscommunications.

 Conclusion:

The take-away from the appointment was that I may need a colonoscopy to determine if this is a flare-up and requires prednisone, or if we should try changing course to bio-therapy like remicaid (yikes!) I, of course, am hesitant to have another scope, since the last one is what sparked me up back in April. So we're kind of at a stale-mate. I understand why he wants the scope, he understands why I don't want it. We have a follow-up scheduled in a month and, as previously mentioned, I am welcome to call in the interim if things get worse. If anything from my records or blood work from today raise any eyebrows they will call me. Somewhat inconclusive overall, but at least it's a start.

Of All The Things...

When I left New York for Vermont I anticipated a certain amount of culture shock. I knew I would miss certain conveniences. Food delivery, late-night dining, the ability to walk everywhere... But never, NEVER did I think the #1 thing I would miss would be the ease of making a doctor's appointment.

Let's recap: In April I had a flare-up. Just as it was settling down, my apartment burned down. That was in June. I have had diarrhea ever since. Some bowel movements are slighly less watery than others, but I have basically not had a solid poop since June 3rd. That is four months of the runs. For the first two months I truly believed it was just stress sickness from what we went through. We tried to make it work for us in NY, but I couldn't handle it. Everywhere I looked was a painful memory, even the good ones. Both our cats died of smoke inhalation and, having already lost my first cat to stomach cancer in March, I wasn't taking the extra loss well.  We moved back to Vermont in August, and I tried to continue my day job from my parents' house. Emotional issues and constant post-diarrhea exhaustion made that damn near impossible, so I'm now on leave while I go to counseling for anxiety and PTSD. Being here has, for the most part, been far less stressful than life in NYC. I'm enjoying being with my family, and seeing a lot of friends that I haven't been geographically close to in over ten years. The air is fresh and delicious, the foliage is knocking my socks off, and I'm getting my kitty fix by volunteering at the local animal shelter. My main complaints are the terrible drivers (always on cell phones - for some reason there are no hands-free driving laws up here, which is upsetting) and, above all else, the length of time it takes to get in to see a doctor.

Which brings us back to the four-months of diarrhea. In August I called a local GI to make an appointment. First I was told I needed a referral from my general practitioner. I explained that I had already called my insurance company, and they had said a referral wasn't needed, but they insisted, saying it wasn't for the insurance, it was just an office policy. So I called my GP back in New York, asking for her to give her blessing to get me an appointment. Her nurse called back after speaking with the practice in VT, and was confused beyond belief. So I called the VT practice myself for clarification - what they actually needed were my records from my previous GI. Ah. Now that's something else entirely. So I called the records department, had the files sent over and was given an appointment for November 1st. I took the appointment, put myself on a wait list, and crossed my fingers.

Then the letter came. Not even the courtesy of a phone call - a letter, explaining that my appointment had been pushed back to November 21st at 8am. Well God help you if you want to meet me at 8 in the morning. And it's a damn good thing I don't have plans to travel for Thanksgiving. Thanks for making these decision for me, health center. When I called to see if there were earlier appointments or better times being offered on the 21st I got a negative. So I called around to some other practices, but they all have comparable wait-times and fed me the same "we need a referral" line and I decided to just keep the appointment I had.

Then I got a UTI. Thinking it would be a cinch to get in to see my GP from my younger years, I called her office and asked if there was time to fit me in that day. Turns out because I've been away for so long, I would be considered a new patient, which my old GP isn't accepting. (Except, as my  mom learned when she ran into my old GP socially, she would have gladly taken me if the receptionist had asked.) I could make an appointment to see another doctor at that practice, but they were booking ten-weeks out. Yeah, UTIs don't wait ten weeks. Luckily I caught it early enough that chugging water and downing cranberry pills for four days staved it off. I certainly wasn't looking to go on anti-biotics anyway, considering the whole unending diarrhea problem.

Now I was pissed. I still am pissed. Every practice seems to be involved with the main hospital around here, which makes sense - but being that this is a health-center-wide issue, it doesn't allow for much freedom for the patient. Every practice I called had a sickening wait-time for new patients. I contacted my pediatric GI for advice, and he suggested I get my former GI to call the new practice and try to get me bumped up. Still no appointment. Still having diarrhea, and now abdominal pains to boot, thanks, in part, to the ovarian cyst removal I had a few weeks ago. The surgery itself went swimmingly - however, despite the fact that my chart says I have an adverse reaction to generic medications, I was given generic percocet for my recovery. Great job, health center! Thanks for taking things from bad to worse! Yesterday it dawned on me that the GI I'm scheduled with would have an e-mail address on the hospital website, so I sent her a plea to get me in sooner, explaining that typically when a new patient calls it's not just to make chit-chat, it's because they're in need. I wait with bated breath for a response.

So that's where I'm at. My appetite is lacking, my gut hurts, and I'm tired all the time. Being on leave helps hugely because I can sleep when I need to, and socializing with shelter pets lifts my spirits. I get to hang out with my mom and grandparents and friends during the day, and I'm definitely not as sick as I could be. That being said, I'm nervous that waiting and waiting to deal with this will only make things worse and that I won't be seen by a doctor until I'm in an emergency situation. Which is - pun intended - shitty.


Image Source: ehow

Poop Strong Takes It To Twitter

A few months back I blogged about a 31 year-old PhD student who has gone medically bankrupt while battling stage 4 colon cancer. Arijit is still fighting the good fight, and man did he bring it to the folks at Aetna yesterday! One follower, Jen Wang, was kind enough to storify the entire exchange, which I encourage you to check out. Health insurance is a maddening industry in this country, and Arijit has done a great job calling Aetna out on their hypocrisy and the ways they've failed him as a patient. Even though I'm lucky enough to have one of the better insurers around, having to make every professional decision in life based on whether or not I'll have health care has been a huge hindrance to my life's goals. The conversation about Big Insurance and coverage denial is an important one, so go read the thread already!

Hip Hip Poohray!

I did it! I finally took a poop that wasn't diarrhea! It still wasn't quite "normal" but it didn't sound or feel like pee, so that's a huge improvement. I credit the iron pills I started taking yesterday when I got my blood test results, which reported low hemoglobin (anemia). Iron can cause constipation, which is a good thing for someone like me.

Jeepers Creepers

So typically a fart is pretty instantaneous in its delivery, right? As in, it comes out and if it's a stinker you're going to know immediately. But lately I've been having creeper farts. They come out seeming harmless enough, then a few minutes later BAM! Right up the nose!

I'm not sure what's the blame for this. I've continued to have stress diarrhea for going on two months now. I've checked in with my gastro, and though he gave me some medicine it didn't really help. I'm not puking and my appetite is strong as ever, but my bowels refuse to produce anything but muddy waters. Although not the poop I'd like to be producing, the pattern has been pretty consistent, whereas this sneaky fart phenomenon is a new development that's only been happening in the past week.

Just now I was feeling the need to let one out, and before I could scurry off to the bathroom I wound up letting loose into my desk chair. I was at first quite impressed with the lack of stench, thinking perhaps the chair had absorbed any malicious odor and yet, about three minutes later, I began to notice an undeniable stank wafting up around me. Hopefully the distance from my cubicle to my co-workers is amble diffusion space. This very thing has happened three times in the past five days, usually while I'm in bed and winding down for the night. I'll let one rip, tell J to brace himself, then tell him the coast is clear when I fail to smell anything. Then within five minutes he reels away from me, pissed off and asking why I didn't warn him about the second round in the chamber. I exasperatedly explain that there was no second round, only a delayed delivery from the first.

In other news...
J and I have decided to leave the city for a bit. We're taking at least a month to go to Vermont and have some family time and some post-fire healing. We've been incredibly lucky to have friends let us stay in their basement studio apartment for the past two months, but have not been so lucky in finding a new place of our own. The bottom line for me is that I don't really want to find a new place here. So as of next week we're off! May my mom's home cooking bring some peace to my bowels...

In the Dumps

Ever notice Oscar's eyebrows look like a furry turd?

It's been a shit year, both literally and figuratively.

I've already posted on here about how we lost one of our beloved cats to stomach cancer, and shortly after I had another nasty flare-up of colitis which lasted about a month. I was finally recovering, and had gone to Vermont to visit my family for a much needed vacation. I was rejuvenated by the trip, came home to J and our other two cats and then the next day OUR FUCKING HOUSE BURNED DOWN. Both cats died of smoke inhalation (thankfully, I don't think I could handle it if we discovered they'd been burned to death) and we're now living in a neighbor's basement apartment as we get back on our feet.

All things considered, we lucked out. We have renter's insurance and the support from neighbors and my workplace has been overwhelming and eye-opening. We miss the "kids" terribly, but we have each other and a pretty remarkable support network to see us through. My pharmacist took care of getting all of my meds re-ordered without any problems from my insurer. My appetite has been decent, which is remarkable as I typically don't eat when I'm upset. I have, however, had non-stop stress diarrhea for the past week and a half so I'm exhausted an my butt is chafed. I know you were dying to know that.

So that's the update for now. I don't anticipate updating this blog again for a while since I have too much other pressing stuff to do, unless the stress diarrhea escalates into something worth writing about (and I hope it doesn't). See you in a few months?

xox
Li'l Crohnsie

Poop Factory

(Video NSFW)

The good news is I'm back to pooping like a champ - the bad news is I'm running my poop factory on the night shift and it's really messing with my ability to get back to the day job. I've been lucky enough that they've let me sign on from home to help get some work done, but the problem is that I'm so tired and twisted from pooping like a machine that I find myself being flighty and making embarrassing mistakes, which bring on the darker side of the prednisone mood swings, depression and paralyzing anxiety. My daily schedule is basically toss and turn and poop all night, fall asleep around 7am, get up to poop and take prilosec around 8:30, fall back to sleep until around 10, take the first round of prednisone, try to wake up and eat something, slump around like a loser, take the second dose of prednisone around 12:30, and slump around like a loser some more.

I was honestly looking forward to being on a course of prednisone right now. The last time I took it it make me hyper-productive, and I was hoping to have a similar experience this time around considering I'm in the final two weeks of my semester. Unfortunately I'm thusfar only more disorganized and unmotivated than ever and it's making me rather disgusted with myself. I have so much I can be doing while I sit at home healing my body, but instead I just watch the time go by, waiting for tomorrow and hoping it'll be better than today. Tonight I'm going to try to take something to help me sleep with the intention of getting to work for at least a half day tomorrow. I'll probably be pissed off and miserable the whole time I'm there, but at least I'll be out of the apartment.