1 Year. 3 Surgeries. 3 Races.

This is what my 28th year is looking like so far:

November 30, 2013 - turned 28
December 2, 2013 - total colectomy & jpouch construction surgery
March 7, 2014 - cervical conization surgery
Still to come:
June 9, 2014 - reversal of loop ileostomy

My complications so far have been 2 partial blockages and severe dehydration, needing 2 IV bags twice to get functional again. Oh yeah, plus 1 stomach bug and 2 head colds. An abnormal pap smear and an abnormal colposcopy in January led to the conization surgery. And in between all this, I have been shuffled through 3 different opthamologist offices as they try to figure out whether I have low-tension glaucoma. So far the best specialist in the country (Dr. Marlene Moster, she was the funniest doctor I have ever seen) has decided nope, no need to treat me for glaucoma. She thinks I have have funky eyes and optic nerves, which she has never seen before. That's never a good feeling to hear come out of a doctor's mouth, but from her, she says its a good thing.

So despite all this medical CRAP, I feel so healthy and amazing, and most importantly happy. And here's the best thing: I have been able to go for a run for the first time in 4 years. In order to celebrate this amazing feeling, I plan on making my comeback with the following races:

August 17, 2014 - Got Guts 5K in Ocean City
September 6, 2014 - The Philly 10K in South Philly
November 16, 2014 - Rock N Roll Half Marathon in Vegas.

In 6 months' time, I will have had countless blood tests, 10 doctor office visits, 6 procedural tests, and 3 surgeries (2 of them major surgeries.) The next 6 months will hopefully bring nothing but positives: 3 races, each them 3-6 miles longer than the last one! I cannot wait.


To anyone who is not a chronically ill patient, this may seem like a lot of stuff to go through. But really, I am getting off pretty easy. Especially now! I felt way worse before surgery. Imagine basically having the flu for four years straight? That was my life! I couldn't eat, cook or watch TV without abdominal pain. I couldn't go shopping, walk the dogs, or enjoy a get-together without the stress of how close the bathroom was.

There are people with this same disease who have much worse situations in many different ways, like no familial support, bad insurance, more chronic diseases and their own dependents to take care of.

My thoughts and hearts go out to those people, they need it more than I do.

Step Into the Sun

And these last three years, I know they've been hard. 

But now it's time to step out of the desert and into the sun.

While I was doing some work from home, I was listening to an old band I was really into in college, The Format. One of my favorite songs came on, and it brought me back to when I was first diagnosed. Not that it spoke to me about my diagnosis at the time, but on a side note, I find myself defining my memories by whether I was sick or not. Like, when I look at an old picture and I think, "Oh I remember that day, I felt like crap but I forced myself to go out." Or "Wow, I remember how healthy and stress-free I was that day." The song just brought me back to those scary and confusing first few months.

Anyway, this song "On Your Porch" came on and these lines spoke to me, about how really the last four years have been so difficult with this disease. But now I am feeling so healthy and so happy that it's my time to step into the sun.

I went for a short run yesterday for the first time in over four years. I was so happy I could have cried. 

The Annoyances of the Chronically Ill

There are a few serious things that bug me about being chronically ill. Most of them are keeping me from being the once carefree and spontaneous person I once was....

1. Type A personality. It's been forced on me. I always have to plan ahead about where my next meal in coming from. Do I have bananas and oatmeal left at home? Who ate my last avocado? Will my Vitamin Water last me through the weekend or do I need to go now? If I don't plan ahead and can't get to these very necessary items, it's not just a simple substitute. It means the difference between severe dehydration which will put me in the hospital. It's also weird explaining that to people. It doesn't seem like its a big deal, but it is. I hate for it to seem controlling and neurotic. "Please, don't eat the last of the mashed potatoes, yes it is life and death."

2. Needle sticks. Actually not the needle sticks so much, those have never bothered me, even as a kid. What REALLY is annoying is when the sticky from the tape AFTER the needle stick is stuck to your skin for days. That shit is NOT easy to scratch off. It's either look like a dirtball or scratch like you got fleas! Or pull off all your hair, health insurance covers arm hair waxing now! But only in the crook.

3. Googling medication side effects. Is that pain all in my head or is it a side effect of my latest med? Luckily, I'm off all meds right now, so this feels like a distant memory. But I still get pains now and then, and I have a quick thought of, is this a serious pain or a passing non-issue?

4. Googling everything. Every since scouring the internet for every remedy under the sun, I have found I can't just sit and simply wonder "Why?" about something. I need to know the answer, and Google can get me there.

5. Conspiracy theorists. This has resulted from the constant Googling. Searching for answers when there really aren't any available leads to stumbling across many different theories on what causes IBD, and chronic illnesses in general. Being chronically ill put you in front of a lot of doctors, and I feel sad that I can't fully trust them now because they haven't been able to fix me like doctors are supposed to. This discontent stems from seeds of doubt planted in me from conspiracy theories about the pharmaceutical and healthcare industry. I certainly don't believe them all, or even most of them, but a shred of doubt is still there. That has led to doubts about authority and life as we know it! What's real? What information can we trust? It's so much that I can't help but laugh! And then I shut my brain off.

6. The fact that I can't put my experience on my resume. I think the ability to juggle doctors' appointments, health insurance coordination, housework, disease maintenance, Google research and a full time job on top of all that has proven some incredibly multitasking and coordination skills. And I should probably add health consultation because now everyone comes to me for advice whenever they have a bout of diarrhea too. I think all this makes me fully capable to become a CEO, or at least a COO of some huge corporation.

Enough of my ramblings... What bothers you, my chronically ill friends?

Post-Surgery (Hours)

This is where it is all fuzzy from the anesthesia and the pain meds.

I remember waking up in recovery. I see a male nurse's back standing at a large countertop in the middle of the open room. I seem to be the only patient in here. I recall realizing I was in so much pain. An intense aching everywhere from my lower ribs down to my hips.

I tried calling out to him but I can't talk, I can't make any noise from my throat. Thinking back now, I'm unaware if I'm intubated still. I suspect I wasn't, I think the reason I couldn't speak was because my throat was so sore from the tube. But I had no issue talking later when I get to my room, you'll see that real soon haha.

The pain is so bad that I need that nurse over here right now to remedy this. So I start banging my fists on the metal bars that protect me from rolling out of the bed. Next thing I remember is someone quieting my fists and saying something about how he's going to help me, just relax.

Next thing I remember is being in my hospital room with my mother, my husband, and my best friend around me. A female nurse came in to check on me, and I remember saying something that made everyone laugh, and she pats my thigh and says, "You are such a trooper." I remember lifting my arms up in front of me, seeing all the wires still attached and saying in a robot-voice, "I am a storm trooper."

If you have never seen the skit of Triumph the Insult Comic Dog at the Star Wars convention from when Conan hosted Late Night, you need to crawl out from under the rock you've been living under and watch it. I've made it really easy for you and here is a link. So that's what that phrase is from.

So my memory is still fuzzy, and my husband says he wishes he recorded more of it, because I remember saying things like, "I'm gonna shoot poop at you from my poop hole." MY best friend Jessica told me she was laughing so hard at the things I was saying she couldn't breathe. The short video my husband did record, I was complaining about "stupid invites to stupid events" on Facebook. My husband tells me that everyone's been asking about how I was doing, and I said, "Yeah everyone must think I died, it took so damn long."

I kept saying that the nurses just, "dumped me here" and wanted to know when I could start pressing my pain pump button. I would like to point out that in no way did the nurses just dump me there, and I was in no pain at all. I think I was just bored and wanted something to do, like push a pain pump button.

Here I am in a nice dilaudid-induced high. I didn't need any oxygen, but as long as I was on the pain pump, I had to keep those things in my nose so it could sense that I was breathing fine. It would beep every time it fell out.

My next post will cover changing my bag for the first time before leaving the hospital. My surgeon (as most surgeons do) had four requirements before I could leave.
1. I could walk on my own without any serious pain.
2. I had passed something besides minimal blood through my stoma
3. I was able to eat without issue.
4. I was comfortable changing my bag.

I met all four requirements by day four and was hope by dinnertime on day 4 :-)!

My Surgery

Life has been quite busy, which is a good thing.

I had my total colectomy on December 2, 2013. Surprisingly, once I made the decision to just do it, I wasn't all that nervous about it. I am the type of person to just commit to something and make it work. The decision process is the hardest part for me. 

After I met my surgeon, Dr. Stein at Hahnemann Hospital in Philadelphia, I was put at as much ease as one could expect preparing for such a huge surgery. He really is an amazing guy, and has only proved more so in the days, weeks and months since my surgery.

So I prepped for the surgery as most people do from what I have researched. I did some pre-op testing a week before the surgery date. There they just took some blood, went over my medical history, and took a pregnancy test. I didn't even see my surgeon but it was a nice, calm introduction to the hospital. Everyone was SO nice. 

I am always so happy, and amazed when hospital staff-persons are incredibly nice. I had such a bad experience my first time as a patient in a hospital (when I was first diagnosed), that I always anticipate mean nurses and doctors with terrible bedside manner. Every single person I encountered through this experience was as kind as I could have hoped for.

Conveniently, the week leading up to surgery (which was on a Monday) was Thanksgiving Thursday, followed by my birthday on Saturday. So my birthday dinner ended up being what I dubbed my "Last Supper." It was nice because it was another excuse for people to come see me and give me gifts before surgery, and to also treat myself to the meal I eat every year for birthday: PIZZA HUT. 

Prep for the surgery was just like any other prep I have done for a colonoscopy. I was assigned MoviPrep, but they all suck of course. 

But the worst part of the whole prep was the antibiotics I was prescribed: Neomycin and Erythromycin. One or both of them made me so nauseous, I was only able to keep 2 each of the pills down, and I was supposed to take 6 of each. I called the number I was given on my instruction form, well my husband did as I was leaning over the toilet bowl, and the woman on the other end was no help whatsoever. So I crossed my fingers that it wouldn't matter much, and it ended up not mattering at all.

So the morning of my surgery, I reported at my given report time, with my mother and husband next to me. I was handed two hospital gowns and a clear plastic bag to put my clothes and things in. I changed, and only kept my glasses on, until the very last second. They went over my medical history again, asked me the same questions over and over and over and OVER again. 

"What's your name?"

"What's your birth date?"

"What are you here for today?"

"What's your surgeon's name?"

I get the added pleasure of the same comment over and over again.

"Your hair color is so gorgeous." (I'm a redhead. I've been getting that one my entire life. Can't say I've gotten tired of it yet. Because seriously, who can tire of comment like that? Not me.)

So eventually, an orderly came to get me with a bed on wheels in hand. The orderly was the nicest, most sincere guy ever. I wish I could remember his name. I hopped on up, and handed my glasses over to my husband and got my final kisses. From this point on, the combination of adrenaline and not having my glasses on, the rest feels like a fuzzy dream. I remember my surgeon, Dr. Stein, coming to meet us. He said a quick hello to my mother and husband and then we were off. 

We chatted about the NFL while we were getting in the elevator. He's a Jets fan, and being from Philly, I root for the Eagles. At least, he's not a Giants fan, or Dallas. I would have called off the surgery right there. We get to the operating room and Dr. Stein says he'll be back in a little bit. 

This is when everyone on the surgical team comes and introduces themselves. This was especially hard because I can't see anyone's face, since I don't have my glasses on. I met multiple nurses, at least 3 surgical residents, and 2 anesthesiology residents, as well as a dedicated anesthesiologist nurse, and the anesthesiologist himself. One of them started an IV. I was given one more pill to take, not sure what it was. 

The anesthesiologist team members keep asking me if I have any fake teeth. And that's when it dawns on me that I am going to be intubated. I don't know why, but this made me the most nervous. Maybe because I hadn't had a lot of time to think about that, but I was more nervous about that than I was about waking up with a bag of poop attached to my abdomen. I had a long time to prepare for that.

There was bustling as some other patients were wheeled in to recover, others were pre-op like me. I also overheard some sort of surgical Skype call, but not with my surgeon.

And then Dr. Stein returns and we are on the move again. I get something injected into my IV to relax me, and then the rest is black. The last thing I remember is being wheeled across the recovery room and realizing how much bigger it was than I noticed when I was wheeled in...