My Life As A Mom (with chronic illness)

I woke up this morning at 3:35am to the sound of BG softly crying “Mommy mommy mommy” and reaching out for me in a sleepy haze–we are still cosleeping and I was perpendicular to her 2ft away on the bed, and I reached out involuntarily and pulled her to me. She’s got a cold and is not feeling very well. Unfortunately my bowels woke up as well, and I have to ditch BG and urgently run to the restroom. Of course BG starts wailing since I’ve abandoned her and I’m sitting on the toilet frustrated as f*ck that:

  1. My kid is in distress and continues to cry no matter how many times I repeat “Mommy is just on the potty and I’ll be right back!”
  2.  I’m awake at 3:35am
  3. I’m stuck on the toilet until the cramps subside and then I’ll have to take my 40mg of prednisone before I climb back into bed to soothe BG

I finish toileting and hastily toss back my prednisone, hurry back to bed and scoop up BG and hold her and rock back and forth coo’ing “It’s ok, mama’s here baby” as she snifffles and buries her head in my shoulder. I then decide we should change her diaper and give her a dose of tylenol, so I have to leave her again to go grab a new diaper from the nursery and tylenol from the kitchen. Again she wails “Mommy mommy mommy” as I stumble around in the dark trying to get it together. I hear Mr. MLACS blissfully snoring in the guest room and am annoyed because:

  1. He gets to sleep through this while I am stressing
  2. He obviously is not wearing his CPAP mask like he’s supposed to

I return to BG and get her diaper changed and give her a dose of tylenol and a drink of water. Then I pull her close to me and nurse her on the “business boob” (my left side) as the right side is “closed for business” and no longer in use. BG tucks into me and within a few minutes she has drifted back to sleep–it’s almost 4:30am. I look at the internet on my phone for a few but I’m exhausted so I set it down and we sleep in until 8:26am! That never happens! BG has been up by 6am every day this week (yawn). But of course when Mr. MLACS is home she sleeps in. Naturally.

Mr. MLACS slept in too and greets us in the living room. I turn on cartoons and situate BG on the couch. Then I turn my attention to the leftover chicken wings from last night–I have been waiting to eat them for breakfast. Since Mr. MLACS is home I let him give BG her Stoneyfield organic strawberry beet yogurt and apple spinach squeezy pack for breakfast, while I stuffed wing stop original recipe mild sauce wings with blue cheese dip in my face like a true carnivore.

I sit at the table and in order to see BG and Mr. MLACS I had to move aside this gorgeous arrangement of farmgirl flowers that arrived yesterday wrapped in burlap and brown paper–a mother’s day gift from BG courtesy of Mr. MLACS. Some of my favorite flowers are included–pink peonies, lavender calla lillies, and purple tulips amongst exotic greens. It’s perfect. Mr. MLACS put very little thought into my birthday or our anniversary and I was disappointed, so the farmgirl flowers for mother’s day were his attempt at redeeming himself. Well done, Mr. MLACS, well done.

Mr. MLACS has turned on the movie “Zootopia” at BG’s request–the main character is a rabbit so BG will say “Bunny! Hop! Hop!” when she wants to watch it. Which is ALL the time. But it’s very entertaining because BG is in love with a song on the soundtrack called “Try Everything”, by Shakira. And in fact, she gets excited every time is comes on because she LOVES to dance! And the cutest thing–she actually has choreographed a dance with Mr. MLACS, complete with lifts and dips and a deep bow at the end. So as I’m stuffing my face with chicken wings, I am treated to a performance by Mr. MLACS and BG. I clap wildly and tell them they are wonderful dancers! My heart could literally burst every time I see BG dance with her daddy.

I have a 10am appointment at Labcorp to have my blood drawn to check serum levels of Humira prior to my injection today. Labcorp is a solid 40 minute drive from where we live. So I hastily wipe up my saucy-dippy mess and rush off to brush my teeth and change my clothes. I look in the bathroom mirror–yep–my face is still fat due to the prednisone. Aaaaand my hair is horribly frizzy. I wet down my hair and try to brush it into a ponytail without a bunch of little hairs sticking out–I wish I had some hairspray but I never ever remember to buy any at the store. Uhg.

Then of course I have to use the toilet and that tacks on 10 minutes to my already tight schedule. IBD is such a PIA (see what I did there?).

I transfer my keys and wallet from the diaper bag to my purse. Then go to kiss BG goodbye–she says “I sad mommy, I sad”, which is new and I have Daniel Tiger to thank for teaching BG about emotions. Maybe I am not such a horrible parent for letting her watch hours of PBS cartoons every day? I tell her “Don’t be sad! You and Daddy are going to play and have fun! Mommy is just going to the store and I’ll be back”. I kiss and hug her and she kisses me and says “Bye Mommy!” And I’m off.

I get to Labcorp and it’s actually not even crowded–a rarity. Sign in. Pay them money I owe. Decline to pay them the “estimated patient responsibility” because f*ck that–they can send me a bill. Am immediately taken back and have a warm conversation with the phlebotomist. Then off I go.

I called Mr. MLACS to see what they were up to and they were getting ready to go “do things”. I said I thought I’d grab a coconut milk chai tea latte from starbucks and then head to Trader Joes for a few things–namely fruit and gluten-free bagels. I was practically giddy about my little “mom-venture” even though it was really tame by any standards. To shake things up, I decided to go to a starbucks I had never been to before.

I know, I am SO wild and crazy.

But to further shake things up, I tuned my SIRIUS radio to a hip-hop station and cranked it loud enough that the people next to me at the stop lights could hear the beats. Yeah. I am a muthafuckin’ gangsta. Rollin’ hard with my car full of reuseable shopping bags, extra diapers, toys, and floor littered with annie’s cheddar bunnies and empty squeezy packs. Like a boss.

So I get to the “foreign” starbucks and am excited to see that it is right next to this faaaaabulous new grocery store I have been wanting to check out. I grab my coconut chai tea latte–a venti instead of a grande–because it’s muthafuckin’ muthas day yo.

Then park and walk into the grocery store… it’s AWESOME! Everything is new and it’s huge and first thing I see is cut up cantaloupe for $1.99 per package–what a deal! I meander around and see a container of strawberries for $1.97! Of course they aren’t organic but at that price I am willing to ingest a little GMO fruit laced with insecticide. Grab a few more things and go to check out–happy to see that *for once* I qualify to use the express lane because I have exactly 10 items. I am a bit jealous of the guy behind me because all he has is alcohol and I would LOVE to drink a large glass of  moscato with some of these GMO strawberries floating in it, but alas, I would be a fool to drink when:

  1. I’m actively flaring–alcohol is inflammatory. Nope.
  2. I’m taking Humira (which says “no alcohol”) and like… 10 other medications… so my liver is already working way to hard.

Giving up coffee and occassional alcohol sucks. F*ck IBD for that.

My check out girl is really pretty–hair fixed, make-up on, nails done–so I lean over and tell her she looks really pretty today. She lights up and flashes me a million dollar smile.

I put my groceries in the car and take a couple sips of my coconut milk chai tea latte. Then call Mr. MLACS, who is out and about with BG “doing things”. I tell him I had forgone the Trader Joes GF bagels and shopped at the faaaaabulous new grocery store instead. And now heading home. He says he’ll see me there, as BG is about ready for a nap.

Now here is my favorite part of the day: I turned on the radio and it was a mix of Nas’s album “Nastradamus”. Which is hip hop at it’s finest. I turned it way up and reminisced about my days as an exotic dancer–I used to love to dance to hip hop. I used to actually cross paths with all sorts of players, pimps, gangsters, club owners, promoters, etc. etc. on a nightly basis. They knew who I was (or at least they knew my stage name). I used to get off work at 4am or 6am and go to breakfast with the girls or to the grocery store when nobody else was there–just me. I had an exciting life, full of drama and intrigue. While I nodded my head to the rhythm and flow of Nas, I let those memories wash over me. I used to be such a badass.

But I was also very lonely.

I didn’t belong in that kind of life. I didn’t do drugs. I rarely drank. And towards the end of my exotic dancing “career” I yearned for a husband, a home, an SUV, and a baby. I just wanted to be “normal”.

Then I met Mr. MLACS in the club I was working at and that was it. I knew I was going to marry him when he said “You don’t belong here”.

But now that I’ve fulfilled my dream of being a suburban stay-at-home-mom, I realize “I don’t belong here” either. I have had a crazy life–one of the clubs I worked at in Hawaii was a front for New Zealand mafia. Those nights I danced at Spearmint Rhino in Vegas and met the real-life version of Tony Soprano. I could go on–I lived that double life for 10 years (me by day, stage name by night). Also, I’m chronically ill and that–moreso than my “double life”–makes me feel isolated from other people. At least exotic dancing is interesting. Telling people about your chronic illness never goes over well. Both of these things are huge parts of who I am, but I hide them.

People who see me now see a suburban mom driving and SUV through the starbucks drive thru on her way to the supermarket. They don’t see who I was before. They don’t see who I truly am now–my struggle with chronic illness.

I turned down the hip hop music as I entered my suburban neighborhood. When I turned down my street I saw Mr. MLACS and BG getting out of his truck and I rolled down the window and greeted BG–she lit up when she saw me and jumped up and down. I parked and she came running up to me with a gift bag, excitedly shoving it at me. She is really into “surprises” lately and we “surprise” Mr. MLACS with something every time we go to the store–things like chocolate milk or deodorant–and when he gets home I hand it to her and she goes running up to him saying “Daddy! Daddy! PRIZE! PRIZE!” So when I saw her bag for me I whispered “Is this a ‘prize for ME?!” And she clapped her hands to her cheeks and whispered back “Prize Mommy!”

She is so precious. So, so unbelieveably precious.

And in that moment life was beautiful and perfect and my heart was so full it felt like it would burst.

I am a Mom.

XOXO,

MLACS

 

 

 

 

A New Diagnosis

Just going to get to the point: I saw the IBD Specialist on Monday and she said that I have *Crohn’s Disease* not *Ulcerative Colitis* due to my fistula. That was not what I wanted to hear. Crohn’s is worse than UC. Crohn’s cannot be eradicated by surgery. Crohn’s is *forever*.

Luckily IBD Specialist had an opening for a colonoscopy at 11am the next day so I took it. I had to do a bowel prep and they gave me Golytely. It was THE worst bowel prep ever–an entire f*ing gallon of foul tasting liquid. Even mixing it with apple juice couldn’t make it civilized. I had stomach cramps, bloating, and severe dehydration. So for future reference–do NOT take Golytely–insist on something (anything) else.

I felt so bad (weak, muscle cramps, sore hemorrhoids and rectum, no sleep) by the time I was done with the prep that I had Mr. MLACS grab me a wheelchair to get from the parking garage to the office. Of course BG was with us too, and Mr. MLACS had planned to take her to the childrens museum while I had my procedure. Unfortunately, it was required that Mr. MLACS remain in the facility during the procedure so he and BG just ran the halls. God bless Mr. MLACS–he has had a tough couple of days worrying about me and keeping up with BG.

What the colonoscopy revealed:

  1. I have severe left-sided colitis. The photos look like chopped liver.
  2. The rest of my GI tract is pristine
  3. Official diagnosis: Crohn’s Colitis *or* Crohn’s Granulomatous Colitis

So IBD Specialist wants me to restart my Rowasa (mesalamine) enemas, and if I find I cannot retain them then she will switch me to cortifoam.

IBD Specialist is confident that she can get me into remission with drug therapy and did not even hint at surgery, so there was no discussion of surgery and no meeting with a colorectal surgeon.

I liked the IBD Specialist and her team, and I am relieved to finally be able to relax because I have a highly motivated and highly competent medical team. I only wish that I could keep them, but unfortunately they are the “House” (if you are familiar with that tv show) of IBD and they only take on problem cases and then once they fix you they send you back to your regular GI.

XOXO,

MLACS

ER Part II: Admitted

So to continue my ER waiting room story…

Mr. MLACS and BG dropped me off at the ER circa 6pm. Mr. MLACS asked me to check the tires because our SUV indicated low air pressure. I half-assed kicked the tires and didn’t see anything wrong. Well, Mr. MLACS did his due dilligence and took the truck to a gas station to check the air pressure. Lo and behold, one of the rear tires was missing 20 lbs of air! Clearly there was a leak. So he took BG to a tire shop down the street to have it repaired. Luckily we didn’t need new tires, just a patch job. More importantly, thank God Mr. MLACS was driving when this happened because I often ignore the truck’s “warnings”–most of the time they are false alarms. It could have been a dangerous situation.

I had packed a bunch of snacks for BG (organic squeeze packs, organic cheddar bunnies, organic string cheese stick) so she happily sat and ate her snacks and watched the guys working on cars through a picture window in the waiting room. The truck was finished by 8pm and Mr. MLACS took BG to Raising Canes for a late dinner of chicken strips (not the healthiest but we only eat out 1 or sometimes 2 meals per week so not a big deal).

By 9pm they were done but I was still waiting in the ER…

Now I was feeling anxious because I had not intended to be here more than 4 hours total–awfully naive for someone who has visited ER’s at least half a dozen times.

BG fell asleep in the car but apparently wet through her diaper and woke up. Mr. MLACS got her changed into her spare outfit and placed a blanket in her carseat as a barrier to the urine-soaked seat cover. BG was upset and Mr. MLACS sat next to her in the back seat while she watched cartoons.

Around 10:45pm I called Mr. MLACS and upon hearing the weary tone of Mr. MLACS’s voice and that BG was still awake, I was ready to give up and go home–but I wanted my lab results. So I decided to stand in line at the admissions desk to tell them I need to leave and ask for a copy of my lab results. I stood there for a few minutes, and then…

A nurse came out and called my name! It was FINALLY my turn! Ironically, just as I had decided to give up.

The first thing I did was ask for socks (hospitals always have socks and you get to keep them–they are non-skid and awesome) and a warm blanket because it was freezing in there. I changed into my gown but kept pants on. Went over my symptoms and medications with my nurse. Then a PA came in and informed me that I am anemic, but not “terribly” anemic–my hemoglobin level was 10 (I think “normal” is 12). But it was disturbing because my hemoglobin was 14 just three months ago–falling 4 points is a lot.

The PA left and after awhile a young MD and her “shadow” came in and talked to me and gave me a “digital rectal examination”. While the MD was there, the nurse came back and gave me zofran, bentyl, and morphine. The MD asked me what my anemia symptoms were and I listed them, and she said it would be a good idea for me to have a blood transfusion–usually your hemoglobin has to be below 7 for a blood transfusion, but I had fallen four points and had a lot of symptoms. If I agreed then I would have to be admitted to the hospital to have the transfusion. I said I would do anything to feel better and stronger.

I talked to Mr. MLACS and he said to go for it. I asked the nurse what she thought and she said do it.

By this time it was after midnight and I just wanted to either leave with my family or send them home to go to bed. The PA came back and was skeptical about me being admitted for a blood transfusion because my hemoglobin levels aren’t that low. She said the “hospital team” would have to evaluate me to see what they wanted to do. Uhg.

**somewhere in here I was wheeled away to have x-rays of my chest and abdomen.

I told Mr. MLACS to just go home because I was pretty sure I was being admitted. I begged him to be SO careful because of all the drunk drivers (I could feel his eyeroll through the phone but I had to say it because *anxiety*). I asked him to keep his phone close just in case.

I started to fall asleep and a new MD–a hospital internist–came in and talked to me. I told him the deal: been bleeding for 4 months, got better on Humira + prednisone but then worse when I dropped my prednisone too low, now current GI won’t do anything without 2nd opinions so I’m stuck like this until somebody/anybody helps me. He said “absolutely not” to the blood transfusion and also got an attitude when I asked about IV iron (which is preferred over oral iron for IBD patients)–Internist said it’s too expensive and I’m not anemic enough to warrant it. *rant* This offends me and pisses me off because he is “treating the numbers not the patient”. My symptoms and history show that I am in distress. Whatever it was 3am and I just wanted to be admitted so I could go to sleep. Internist said he wanted to put me on high dose IV steroids. I balked and said sure but only if I won’t have to wean again. He said I shouldn’t need to wean much if at all. So suddenly I was getting admitted for IV steroids instead of a blood transfusion. I had seen an ER MD, a PA, and an Internist MD and every one of them told me something different and confused the hell out of me. But I was proud of myself for keeping my wits about me even with their nonsense and my exhaustion and the morphine.

So I was finally wheeled up to a room and I vaguely remember texting Mr. MLACS my room number before I fell asleep. That was Friday. When I agreed to be admitted for a blood transfusion I was given the impression that I would be released the next day (Saturday).

The nurses woke me up several times to take vital signs/draw blood/give medications but I was exhausted so I barely opened my eyes and kept falling back asleep. Then there was a parade of doctors: Colorectal Surgeon, Internist MD, and Gastroenterologists. The Gastroenterologists were from the same group as the local GI that I *fired* because his nurse didn’t return my calls when I was serious crisis. I only saw that GI one time but these other GI’s kept mentioning his name as though I was still his patient. It was awkward for me to have to correct them–I said “things didn’t work out” with me and the local GI and that it was really his nurse’s fault and I know he is a good doctor. Whatever. They didn’t seem very interested. I was actually shocked when they told me I needed to stay in the hospital for the weekend *at least* and get pumped with IV steroids. That was so NOT what I signed up for! I want to wean off of the steroids! I wanted a blood infusion to quickly fix the anemia and give me some energy and sustain me until one of my GI’s “fixes” me. I wanted to go home to Mr. MLACS and BG. But one of the GI’s turned to me and said “I think you don’t realize how sick you are”, and I thought… she’s right but so what? I was worse off 2 months ago and never got admitted, so why now? I called Mr. MLACS in tears, apologizing over and over for allowing myself to be admitted because if I had only known they would pump me with steroids and keep me all weekend then I wouldn’t have agreed to it. I was SO frustrated. He told me not to worry and that BG was asking for me and they would be there soon to visit.

Mr. MLACS came to visit me Saturday, Sunday, and Monday. Of course Mr. MLACS had to take off work to care for BG and I felt guilty about that because he has a big project this week. But he pretended it was no big deal, which was sweet of him. When they would visit we would walk downstairs and grab snacks and walk around. BG was like a little goodwill ambassador and said “Hi!” to everyone that crossed her path–people would smile and tell us how adorable she is. Then we would hang out in my room and I would cuddle BG and we watched cartoons until she became restless and it was time to go. It was hard to watch them leave, but I won’t lie–it was good for me to just lay in bed and sleep for three days straight. On Sunday the GI agreed that I could be released the next day.

But on Monday the Internist MD came and told me that my hemoglobin had fallen to 8.9 and he offered that I could have an IV iron infusion and I jumped at the opportunity. He said I should be done and out the door by 10am. But no. It was almost 3pm before I was released. We tried to go and eat but BG had missed her nap and was obnoxious so we ended up getting our food to-go.

Today I have been fielding calls from ALL my doctors because they were all notified that I was in the hospital. My biggest problem right now is that I planned a trip to my hometown and planned to see my Midwest GI on May 1st. But then my current GI referred me to a *superstar* IBD specialist in his city and they also offered me May 1st. So now I have to choose. And much to my chagrin, I think I will have to cancel my trip home to the Midwest because I just dont think it’s wise to travel alone with BG for a week in my current state. It’s a 10 hour drive and then we’d stay in a hotel for a week. It’s 3pm now and I’m already anxious for Mr. MLACS to come home and take over with BG because I just want to lay here and not move. I’m still passing blood and going to the toilet 5-10x per day, I’m tired, and my rectum hurts. So… I guess the only reasonable option is to cancel the trip home. And I’ll be seeing the Southern IBD specialist on May 1st.

I hope she can “fix” me.

XOXO,

MLACS

Waiting In The ER: Real Stories

I’ve been waiting to be seen for 4.5 hours, alone because I refuse to subject my family to the germs and all the crazy ass people.

Story #1

I find it odd that entire extended families parade into the ER when only one of them is ill and not even *that* ill because they are sitting there talking to all the aunts/uncles/cousins. Some of them even brought pillows and blankets. I do not understand this “borg” mentality, clearly, as I chose to be alone. Even if Mr. MLACS was here we’d just be looking at our phones because we are not the “loud family reunion in the ER” types.

Story #2

I find it odd and inappropriate that people bring kids to the ER when they don’t need to be there. I saw 5 little girls skipping down the hall in front of 4 adults–surely *one* of the adults coukd have kept the girls? ERs are not places for kids. Also, I saw a birthday party of pre-teen girls–like 8 of them–carrying gifts for someone. And then there are a bunch of teenagers…

Story #3

Speaking of teenagers, there was a band leader and a baton twirler girl dressed in their band uniforms, sequins and all! There are also several members of a track team. And some honky-tonk trouble makers who think it’s funny their friend hurt his hand.

Story #4

There was a mama here with her husband, toddler, and infant. She was here before me. And I felt so bad for her and her family having to wait. They were clearly stressed out and uncomfortable. Finally I heard the baby crying and saw the mama’s head in her hands and went and quietly asked if she needed anything, because my husband and daughter were close by and could drop something off. Poor thing was toast and said no thank you and they left shortly after. I wish she had been seen. I would have given her my spot if that was an option.

Story #5

So Mr. MLACS is parked in the parking with BG, who is watching cartoons in her carseat with a very full belly and fighting sleep. He tells me there are a bunch of people drinking in the ER parking lot. Seriously?! I’m not surprised but it’s so lame.

Story #6

There are some suuuuuper sick looking older people scattered around the waiting room slumped over in wheelchairs. They look like they are ready to die. Kind of creepy.

Then there’s me. Lookin all Johnny Cash “man in black” in head to toe black sweats and a ball cap. Glad I wore the ball cap because it is easier to avoid eye contact with weirdos. I was feeling like crap and then I spiked a 100° fever and I needed to have blood drawn anyways, so decided to hop on over to the ER round dinner time, thinking it wont be crowded because its early. And it wasnt too crowded. But my rookie ass forgot that they take people based on priority. So even though I was here early, at least 6 ambulances have pulled up with messy traumas and then there’s all the people who look like they are dying. And the junkies faking chest pains to jump the line. I am SO screwed. But I already had blood drawn and I do NOT want to have to go to labcorp tomorrow and spend 2 hours waiting there after I “did my time” here. And Mr. MLACS keeps telling me to stay.

But it sucks. I’m sore and achey. I havent eaten sh*t in the last couple days and I brought apple juice but I’ve run out. I am having colon “attacks” and the pain is real and I sit here squirming around, clenching my butt and my jaw, lest they call me while I run to the toilet. I did go twice though and told the front desk my name just in case. Not that they paid any attention. I hate “exploding” in shared public restrooms but I had no choice. I hate that BG and Mr. MLACS are in the parking lot with a bunch of low-lifes. I worry that we’ll be hit by a drunk driver on our way home and it will be all my fault for this useless trip to the ER. But I am grateful to be better off than some of these poor sick folks.

XOXO,

MLACS

 

Decisions Decisions…

Saw the local colorectal surgeon on Tuesday (the one I saw about my hemorrhoids back in February) and saw current GI on Wednesday. Both appointments went better than expected.

Colorectal surgeon asked me questions, including “Are you sure you have a fistula?” and “Are you sure you have Ulcerative Colitis and not Crohn’s?” The answer to both questions is emphatically–YES–but with hesitation about the UC vs. Crohn’s diagnosis because I need a colonoscopy and biopsies to confirm a diagnosis. So far all tests (and my 13 year disease history) point to UC. But people with UC only rarely develop fistulas–that’s a characteristic of Crohn’s–so I see why all my docs are skeptical.

The Surgeon had me drop my pants and lay face down on her table. She commenced poking and prodding and the *highlight* was when she performed a “digital rectal examination” (finger in the butt).

But the good news is my fistula is superficial (only in the skin) and Surgeon only needs to “lance it and lay it open” (fistulotomy) and it will heal. This is great news, because many fistulas require more complex surgery, sometimes multiple surgeries, and can take months or even years to heal. I got super lucky to have an uncomplicated fistula, and I’m grateful to have caught a break on this one. I’m scheduled to have the procedure under anesthesia on May 10th. I could have it done outpatient but that’s not how I roll–prefer to be KO’d and blissfully unaware for procedures.

Saw current GI on Wednesday. To my surprise he actually suggested that I have a second opinion and told me he’s like to refer me to an IBD specialist in his city. I thanked him and said I’d be happy to follow his recommendation. I then asked if he’d mind if I saw my old GI in the midwest while I’m back home in May, and current GI was all for it! What a relief!!! I thought I would have to be the one to bring up getting a second opinion and I was dreading it.

I was so flabberghasted by the way the conversation went that I neglected to press current GI about my medication options to help me wean off the prednisone. But I honestly don’t think he wants to discuss it until after I get a second opinion. So for now I’m stuck at 25mg prednisone. Hating it (prednisone) because I have “moonface” and look chubby even though I’ve lost weight. Had hoped to be back to my old self soon. I really have to let go of my expectations.

Current GI examined me and again (2 days in a row) I received a “digital rectal examination”. He was going to stick a scope in my anus but I requested he not do that and he obliged.

So I need a colonoscopy and current GI said he *can* do it but indicated that one of the second opinion docs would be a better choice. I was surprised he said that. Initially I thought to have the procedure done by my midwestern GI when I see him during my trip home. But talked to his nurse and he is booked that week. Which is actually better because I’ll need someone to take me/pick me up and look after BG because I’ll have to be under anesthesia.

I decided to see if the local Surgeon can “supersize” my order and add a colonoscopy onto my fistulotomy, since I’ll already be under anesthesia and this way Mr. MLACS would only have to take one day off work. I called today and spoke with Surgeon’s nurse, who informed me that Surgeon prefers not to combine the procedures, but she will ask Surgeon and get back to me. Fingers crossed that Surgeon agrees to do both procedures on May 10th.

As for me, my symptoms are still the same, haven’t worsened or improved. Urgency, tenesmus, toilet bowl red with blood, passing very little stool, 5-6x per day. I’m fatigued but still managing quite well. However, I think I need to be checked for anemia. Been bruising easily and today felt winded walking through CVS. I really do not feel like messaging current GI to ask for lab orders and kick myself for not requesting them yesterday, although to my credit, I did inform the MA of my concerns when she was taking vitals and information–so GI ought to have mentioned it.

I started exercising again–tried my first pilates class using the reformers and LOVED it! It’s the perfect activity for me right now and I thought it was fun! The teacher is lovely and I did so well that she asked if I should consider becoming certified to teach. This made me feel good and also has inspired me to find my way back to the fitness industry. I love helping people reach their fitness goals (coaching) and I want to do something outside the home. I’m not prepared to seek certification or teach just yet, but I will start looking into it and find an opportunity when the time is right. Oh! I bet most of you don’t know that I was a fitness competitor and personal trainer for years. Love it but my UC started flaring in 2011 and I never fully recovered–it’s been a rocky few years–and sometimes I don’t see the inside of a gym for weeks or months. So I just do what I can, when I can. And I hardly feel qualified to motivate other people when I’m not in shape. Hopefully that will change soon via meds or surgery, because I miss my super active lifestyle. I’m a “jock” at heart.

We dyed Easter eggs with BG tonight and she was a riot! Threw the biggest fit until we were done coloring the eggs and then greedily shoved them in her Easter basket and clutched them to her chest. Then commenced playing with them–Mr. MLACS was a gorgeous blue “daddy” egg, BG was a radiant pink “baby” egg, and me… I was a cracked yellow “mommy” egg. Mr. MLACS teased me because his “daddy” egg was shining bright like a diamond and my “mommy” egg was plain and beat up. None of these eggs will last until Easter but c’est la vie–just hope BG doesn’t hide them where we can’t find them!

For Easter I bought BG a bunch of trinkets, like a slinky, silly putty, bubbles, stickers, etc. But no candy because refined sugar turns her from a mogwai into a gremlin–seriously, she loses her mind. Plus her idea of a treat is organic fruit snacks and chocolate graham crackers, so why ruin a good thing by showering her with candy?!

Hope you all have a lovely Easter weekend. We will be spending it just the three of us ❤

XOXO,

MLACS

 

Nope.

So, I *thought* I was headed for remission. I *thought* I would be good-as-new in a couple months and ready to run a marathon (not that I run, but I would like to know that I could if I wanted to) and all cleared to get pregnant again–I am so longing for another baby.

But no.

Last Monday I dropped my Prednisone from 25mg to 20mg and tried it for 2 days. My symptoms increased so I was like “Oh hell no!” and increased my Prednisone to 25mg again.

But the damage was done. I opened “pandora’s box” when I dropped my Prednisone and my *beast* of an immune system woke up.

And it keeps getting worse, not better. My frequency has increased from 2-3 toilet sessions to 5-6 sessions. I have cramps and tenderness in my lower abdomen. I have to *run* to the toilet, as my urgency is back (thank goodness for depends). I have tenesmus (feeling like you have to poop but nothing comes out) and the straining is inflaming my hemorrhoids. And I’m not passing much if any stool, just bright red blood–so back to a liquid diet I go.

I talked to my awesome GI nurse in the midwest last week, and I have planned a trip to go visit family and friends and also see my old GI and a colorectal surgeon while I’m there. If I have the surgery to remove my diseased colon (more like *when*, but whatever) I want to do it at my old GI’s hospital because they are nationally ranked as a good hospital for colorectal surgery and I would be close to my support system.

I can’t believe I’m seriously to the point of considering surgery. It feels surreal.

For those who don’t know, my surgery would entail removing my colon in one surgery and fashioning a stoma (a hole in my abdomen where my intestine protrudes) and then I would be pooping in a bag for several months while I heal. Then I would have a second surgery to reattach my intestines to my anus, allowing me to poop out of my butt “normally”. But, it really wouldn’t be normal because without my colon food will pass quickly and I would have to go to the toilet as often or more often than I do now. Which is not desireable. But best-case scenario I would be “disease free” once my colon is removed and no longer need to take medications or worry about getting sick.

Worst case scenario is I might have constant infections or lingering disease in my anus that requires medications. I could also end up with a permanent ostomy bag (poop bag that I wear 24/7 for the rest of my life) if the reattachment surgery fails.

Even though I don’t want to deal with surgery, or a second surgery, or an ostomy bag, or pooping frequently as a ‘new normal’, or the potential complications…

I would still choose surgery over loading myself with drugs and feeling like sh*t for the forseeable future. I would rather live life on-the-go with an ostomy bag than live life on-the-couch with my diseased colon.

But there are lots of other things to worry about besides where and when to have surgery. Like how will Mr. MLACS take off of work to deal with this? Who will help us with BG? What can I expect during recovery–how long before I can lift my 34.5 lb kid into her carseat to go to the store/park/etc.? What will this do to us financially? And how will I come to terms with the fact that we are not having another baby (when that was the cornerstone of my ‘5 year plan’)?

I see a colrectal surgeon tomorrow (here in the South) regarding my fistula. And I see my current GI on Wednesday. Maybe current GI will give me some medication options, but I’m not sure he can or will do what needs to be done to get me well.

Mr. MLACS is pissed that I’m sick again and he was a complete dick about it last night. I really wish he could support me the way I supported him through his medical crisis–I was positive and very “it’s us against the world” and I did a lot of reasearch about what was going on with him. He has a sour attitude and can’t hide his frustration and anger, which makes me feel anxious and guilty on top of all the other sh*t I have to think about and deal with. It’s ok for him to have these feelings but it’s not ok for him to stew in them instead of dealing with them. And then blow up and heap his issues onto my already full plate–which he did last night. I was so exhausted and just… numb… I didn’t even cry. I’m just really disappointed in him and I doubt his ability to deal with whatever comes next. He just texted me that he can take off work to watch BG and take me to my appointment in the city on Wednesday. But if he’s going to use it ammunition to browbeat me during an argument (which he did last night) then I’d rather he just go to work so there’s one less thing for him to complain about. I don’t need his drama right now.

XOXO,

MLACS

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