Results Part II

Ok, so I went to have blood drawn at Labcorp 3 weeks ago and had my bone scan and MRI 2 weeks ago.

The bloodwork and bone scan were easy and uneventful, just required me to leave BG at home with Mr. MLACS and wait (and wait and wait).

But the MRI was not what I expected. I had previously had an MRI almost a year to the day prior to this MRI, when I had my 4th colonoscopy and 24 hours later spiked a 104.3 fever and had to go to the ER and be checked (via CT scan and MRI) for bowel perforations, lest the doctor doing my scope had punched a hole in my bowels. During my initial MRI in the ER, they just injected me with dye and I don’t remember much of it because I was mercifully given morphine.

So I was a bit disappointed when the nurse handed me 3 bottles of a suspicious looking liquid called “volumen”. I can tell you with confidence that anything you have to drink in order to have a test of your digestive system is going to taste like sh*t and you’re going to have to drink a lot of it.

The nurse informed me that I would need to drink one 450ml bottle every 15 minutes and confirmed my suspicion that it tastes like sh*t when she said “Some people find it goes down easier if they pour it over ice”. I accepted the cup of ice and the nurse returned me to the waiting room. I bravely took a swig from the bottle and immediately regretted it. It was sweet, with an unnatural citrus flavor and the consistency of watery slime (or for my infertility sisters–the consistency of EWCM). It was f*cking gross. But I’ve had worse. So I poured it over ice and started slamming it through a straw.

The waiting room was nice and I was seated in front of a theater-sized television which was tuned to my favorite channel–HGTV. There was no one near me so no one to see the twisted faces I was making or hear the profanity I was muttering in between swigs. I had to fast for a few hours prior to the MRI and I’m not sure if it was that or drinking the ice cold volumen or the thermostat of the office, but I began to feel very cold.

I was proud of myself that I managed to choke down the first two bottles in the alotted 15 minutes. Finally the nurse returned (slightly early) as I was struggling to finish the last half of my 3rd bottle. By this point I was struggling to finish in 15 minutes, or really, to finish at all. I pushed myself. I also considered tossing the last couple sips and lying about it. But *just* as I finished it the nurse came and saw me sipping and said “Ok we’re ready–it’s ok if you didn’t finish it all”. The irony.

She handed me a gown and showed me to a changing room. Instructed me to take anything off that had metal (my bra) but everything else was fine. Come to think of it, I took my shirt off when I put the gown on and I’m not sure I had to? Oh well. I realized I kind of had to pee, but I was freezing and my desire to lay down under a warm blanket trumped my need to pee, so I didn’t bother.

This was a mistake.

The nurse showed me to the MRI machine and had me lay down, then finally she placed the warm blanket I had been waiting for over me (side note: experience has taught me that hospitals and clinics such as this always have warm blankets–or at least blankets–so never hesitate to ask). I looked up to see a clear blue sky, as the room was crowned with a glass roof. It was sunny and welcoming, unlike the dreary basement where my previous MRI took place. I was in a good mood and chatted with the nurse as she placed my IV. She then offered me some earphones and asked if I’d like to listen to music. I asked what my options were–did they have any reggae? Well no, they didn’t. So I ended up with classic rock. (side note: I love reggae)

The nurse told me to listen for their instructions and placed a balloon-thingy in my hand, which she told me to squeeze if I needed anything during the MRI. She said the MRI would take 35 minutes. I felt very comfortable and told her I was ready.

Well… First thing they told me to do was take a breath and hold it. As I was still inhaling the machine started vibrating and making a loud rapid-fire “blip blip blip blip” noise. It jolted me. This was unfamiliar. It also felt like I held my breath for a long time. Then before I was even recovered from the first round, I was told to take a breath for the second round. Like seriously, I’m not an Olympic swimmer–I need to catch my breath after I hold it for awhile. At this point I began to feel a bit anxious. I also wondered how geriatric patients handled this–I’m an athletic young-ish woman–if I felt overwhelmed how must they feel?

So this process of holding my breath at intervals while being shaken like a martini and accosted with loud noises continued. And it wasn’t long before I realized the effect on my bladder–I needed to pee.

My anxiety was steadily increasing as I came to terms with the fact that I was stuck in this machine and doubtful that I could hold my pee for the duration. The question became: Do I notify the nurses and see what they say, or do I just pee in my depends adult diaper and hope for the best?

I decided to squeeze my ballooon-thingy and see what the nurses had to say.

Nurse: Yes?

Me: Um, how much longer until we’re finished?

Nurse: About 20 minutes.

Me: Oh, ok, well then…

Nurse: Do you need something or can we continue?

Me: Well I really have to pee and I’m not sure I can hold it… But I’m wearing depends so if I do go it would be ok, but would it mess up the test? I will try to hold it though.

Nurse: Uh, well if that (me peeing myself) happens let us know

Me: Um, ok. Thanks.

Aaaaaaand that was awkward. I decided to try my best to hold it. But with the machine vibrating me and the added pressure of having to breath in and hold it, I was using every ounce of mental and physical strength. It was impossible. Like this should a million dollar challenge on some reality tv show.

I tried to focus on the music–Pearl Jam, followed by The Eagles… but the radio DJ banter in between songs was incredibly annoying and ruined my concentration. I started kicking my feet as some kind of distraction, and that helped a bit. I kicked faster and faster as my bladder swelled and my discomfort grew. In desperation I squeezed the balloon-thingy and asked the nurse how much time was left?! And she answered 3 minutes. I said I would try my best but I really doubted I could hold it. And then shortly thereafter, my bladder burst and I began to trickle, then stream…

I squeezed the balloon-thingy and simply said “I couldn’t hold it” and the nurse said “I’ll be right there” and the machine stopped…

What?!

I was under the impression that you can’t stop an MRI once it’s started. Hence my resignation to suffer. Hence my humiliating admissions that:

1. I am wearing adult diapers

2. I am currently wetting my pants

And if you read the above conversations between myself and the nurse, then you can see that she never mentioned stopping the MRI to allow me to use the restroom. To her credit, the nurse rushed to get me out of the machine after she asked if I had already pee’d (yes, yes I did) and if I still needed to pee (yes, yes I do). After she unstrapped me (my midsection was immobilized) and unhooked my IV, she informed me that they had scrub pants I could wear if I needed them. I thought I might need them, but was relieved to find that my depends were *dependable* and had spared my pants.

I suppose I ought to have been mortified, but I wasn’t. In fact, upon realizing that my pants were dry and knowing that I had stashed a spare pair of disposable underpants in my purse, I practically skipped back to the MRI room and finished my procedure in a state of calm and relief.

On my way home I called my sister and told her the whole story while we laughed hysterically. I hope it gave you a chuckle too. But if you can take away some useful information then that’s all the better. Lessons here are:

  1. Always pee before your MRI.
  2. If you need to pee (or poop) during your MRI, don’t be afraid to stop the procedure and do what you need to do.
  3. Depends adult diapers rock. Don’t hesitate to use them during a flare or for any other occasion. They are so discreet that I even wear them under leggings. And comfortable too! Seriously, I should do endorsements for them.

So then here are the results:

  1. Bone scan was normal. This means I’m no worse for the wear even with my prolonged use of high-dose Prednisone. I’ve always taken calcium/magnesium/D3 and I suggest anyone with IBD do the same, as IBD hinders our absorption of nutrients and we are often deficient in these 3 in particular. Take these in addition to any multivitamin.
  2. My blood tests showed that I do not have elevated IgA or IgG–this supports my UC diagnosis as 80% of Crohn’s patients test positive for one or both, but only 10% of UC patients test positive for either. Yay!
  3. My test to see if I possess the enzymes to metabolize 6MP says that I am an “intermediate metabolizer”. My GI said this indicates that the medicine may not “clear completely from my system”. I take this to mean that I *can* take 6MP, but it’s better if I don’t. Well, alrighty then. Scratch that.
  4. Rather than adding 6MP, GI decided it would be best to increase my frequency and/or dose of Humira. I’m all for that because I have felt better after taking it for 3 weeks in a row.
  5. Best of all, my MRI showed only showed mild inflammation in my rectum and lower colon! Also consistent with a diagnosis of UC–so my GI changed his tune from “I think you have Crohn’s” to “It’s UC”. I called it! And what’s more, the MRI didn’t even detect my fistula. I hope that means that it is healing and that I might not need a seton or other procedure. On the other hand, I worry that I should have a seton placed anyway, as I do not want another abscess–have yet to discuss my concerns with my GI.

So no bad news! *fist bump* I got the results a week ago and since then I’ve been stable but haven’t improved. Still having 3 BM’s per day, partially formed but definitely abnormal and accompanied by a fair amount of dark blood tinged with red. So I’m still actively flaring. But grateful to have energy and stamina and to be able to control my bowels (hold it) and to not have pain and cramps and… I could go on but the gist is that my quality of life has improved exponentially but my colon still needs to heal.

I’m still weaning off Prednisone and went down to 25mg last week. But haven’t been feeling so good (BG has been sick so I probably have it). Maybe I’m sick, maybe my body isn’t ready to step down to 20mg yet, or possibly both. So I’m holding at 25mg for now until I figure it out. I’ll just throw it out there: I’m a bit concerned that I might have Lupus–not drug-induced from Humira, but legit Lupus. Don’t want to think about it though so will try to push that to the back of my mind.

XOXO,

MLACS

 

 

 

 

 

 

 

 

 

Advertisements

25 thoughts on “Results Part II

  1. Yay! Glad things are looking up!

    I totally enjoyed your story. I am a nurse, and I can tell you that I’ve seen it all and nothing is really weird to me anymore. I’d bet that nurse has had that happen as well. I’m glad you were able to laugh about it!!

  2. Oh great news! I’ve never heard of a glass ceiling for an MRI before. My MRI were always going for that “dark, creepy” basement feel, you know to add to the effect of feeling like you’re in a coffin. 😉

    I know you’re pain on peeing first. I was able to get through my MRI, but that was not fun.

  3. Happy to hear you are feeling somewhat better, and I hope you continue to heal. And I really hope you don’t have Lupus!! Is that something you’ve discussed with any of your doctors?

    • Not lately. It came up in 2013 after my 1st miscarriage because I had elevated ANA’s. But I don’t have APS or other blood disorders, and I didn’t have RA (at the time). But before this recent flare I was having a lot of symptoms–constant mouth ulcers, swollen glands (particularly my parotid glandsb which is strange), bad neck and shoulder pain that felt like swelling/glands, fatigue, facial rash (diagnosed rosacea) that is incredibly sensitive to sun, lower back pain and joint pain… And now that I’m dropping my prednisone the symptoms are coming back. Maybe I’m just sick? Or maybe it’s autoimmune but not Lupus? I dunno. But I’m tired of feeling like sh*t. XOXO

  4. So glad the results were good (in relative terms). That pee story had me wincing. On the Lupus: I don’t disagree with your symptom assessment but really hope they are symptomatic of your taxed out immune system not a new diagnosis. Are you sleeping better nowadays?

  5. I would have definitely had to pee myself too! As they said on Billy Madison, you aren’t cool unless you pee your pants! Why didn’t the nurse just offer and save you the trouble?@?! LOL.
    Glad for the good news and continued positivity. xxx.

  6. I have literally never been able to drink that stuff. I get through about 2/5ths of the massive gallon bottle, then I can’t drink it without wanting to throw up. Then the doctor asked me why I was wearing a diaper and I said because you made me drink the stuff that makes you lose all bowel control. Oh well, be well.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s