More Drugs or Less Colon?

How many more drug therapies do I want to try? When will I feel “ready” for surgery (to remove my diseased colon)? Which surgery option is best for me (permanent illeostomy, j-pouch, k-pouch)?

These are the questions I have been agonizing over since I received results from my colonoscopy on May 2nd and blood tests from these past couple weeks. I have been anxious to learn what the IBD Specialist would recommend at my follow-up appointment this past Monday May 22nd. I was afraid she would only offer options I didn’t like and then bully me to pick one.

I went to the city for the appointment and left Mr. MLACS and BG back home, which was actually good because I needed the 4 hour round trip drive time to myself.

I was trying to act casual when I saw the MA, like “Hey girl” but my blood pressure gave me away–148/80. It was higher to begin with, like 150/90. I groaned and leveled with her that I had been stressing about the appointment. Filled her in on my progress post-colonoscopy: first few days thought I might die, added Cortifoam enemas and they helped, now I feel as good or better than I did pre-colonoscopy *but* it’s moot because I’m still on 40mg prednisone since I got sick when I tried to drop to 35mg. So basically, nothing has really changed.

Then I sat in the small, stark, window-less room by myself for 20+ minutes freaking out until IBD Specialist knocked and entered.

She wasted no time. Asked me questions. Discussed my test results. Then launched into a flow chart of treatment options, during which I was laser-focused, taking it all in and formulating questions to ask at the conclusion of her presentation. Must say, I love well organized notes and flow charts, so I appreciated her giving me the visual.

My test results:

  1. Colonoscopy showed severe left-sided colitis. However, there was no inflammation outside the colon (good) and all biopsies came back clean. I tested negative for CMV.
  2. I tested NORMAL for TPMT, which means I CAN metabolize 6MP and Imuran, so these ARE treatment options for me! Yayyyyyy!
  3. My Humira serum levels were pitifully low (2) and IBD Specialist said this indicates that the Humira isn’t doing anything for me. However, I tested negative for antibodies (to Humira) so it remains an option, albeit a weak one. Boooooo.

So with this in-mind, IBD Specialist presented me with treatment options:

1. Humira + Imuran

I went into this knowing my first choice would be to add Imuran to my Humira. I know the Humira HAS helped me (even if it doesn’t seem like it clinically)  and I’m used to it–no negative side effects–so I don’t want to gamble on a different biologic. Since my Humira levels were low I asked about increasing my dose from 40mg/week to the max dose of 80mg/week, but IBD Specialist said 80mg has not shown to be any more effective than 40mg so she doesn’t prescribe the 80mg dose. Frustrating, but ok. Moving on. She said I can try adding the Imuran in hopes it will “boost” the Humira and make it more effective. I was SO relieved she gave me this option.

2. Remicade + Imuran

Even though I tried and “failed” Remicade, IBD Specialist suggested I try it again and heavily medicate (benadryl, tylenol, etc.) in hopes of avoiding a reaction. Like, apparently I should try it even if I do have antibodies. But after further discussion about my experience with Remicade, she decided it’s not an option after all. I was not at all interested in trying it again.

3. Stelara + Imuran

Stelara is a newer drug that has had great results for a lot of people–I’ve been reading peoples’ experiences on forums and it looks promising. It may take only a few weeks to reach “theraputic levels” or it may take months. It’s my second choice after Humira. I hesitate to switch though because I fear getting very ill again if I quit Humira, potential side effects of Stelara, and I want to have a baby and Stelara is a newer drug so there’s nothing to say of it’s safe for pregnancy or breastfeeding. But glad it’s an option.

4. Entyvio + Imuran

Entyvio is also a newer biologic and plenty of people who “failed” Remicade and/or Humira have found success with Entyvio. But it is slow to work–definitely slower than Stelara. So it would be my 3rd choice… except…

I’m really leaning more towards surgery.

5. Diverting Illeostomy (I think it is called?) Where they would disconnect my colon and give me an ostomy (poop in a bag), which could allow my colon to rest and heal. I crossed this off immediately, saying that if I am to have surgery then it will be THE surgery to remove the diseased colon.

IBD Specialist perked up and said surgery is a great option for me. However, as a “Crohn’s Colitis” patient I am not elligible for the J-pouch. Which I already knew. But I need a 2nd opinion before I will accept her diagnosis, and rule out the J-pouch as an option. I intend to seek a second opinion from the Cleveland Clinic. I have not shared this with IBD Specialist, because she acted indignant that I questioned her diagnosis in the first place. So that leaves the permanent illeostomy or a “continent ostomy” in the form of a K-pouch (I’m not considering BCIR). The illeostomy would *theoretically* be the simplest surgery (with no pouch to fashion) and much less chance of complications now or down the road. IBD Specialist said that since I have never shown inflammation outside the colon there’s maybe only a 2% chance of disease reappearing after surgery, so I could expect to live *MED FREE* as in no more pills, injections, infusions, enemas, steroids, etc. Buh bye medicine cabinet! Which is what I want–no more disease, no more meds, living life to the fullest. But then you have to deal with caring for an ostomy and learning to live with the bag. How will I wear clothes–what will be comfortable? What about when the bag leaks (everyone does sometimes)? What about the audible noises a stoma makes as it empties into the bag–will I avoid eating to avoid embarrassing noises in public? What if my skin is super inflamed by the adhesives used to attach/seal the bag to me–I do have reactions to adhesives (like from bandaids and the sticky pads they use for an EKG, etc.) so this is a serious concern for me. If I wanted or needed to remove my entire rectum it would require a 2nd surgery (I thought it could all be removed at once but apparently the rectum removal is complex). The resulting wound from rectum removal may take for-ev-er to close and many people are ‘oozing’ for a year post-op. So, it could be cut-and-dry or it could be more involved.

The K-pouch removes the entire colon and creates a resevoir pouch akin to the J-pouch, which holds waste and gives you some time in between needing to empty it. You have a “valve” on the outside and when you need to empty your pouch you use a catheter, insert it into the valve and it drains your pouch. You can wear your regular clothes without concern for concealing a bag underneath. You decide when to empty your pouch–no spontaneous noises drawing attention in the middle of a quiet room. No worries about a bag leaking, or changing your bag, or skin irritation from adhesives/leaks/etc. But since it is more complex it is also more prone to complications, and since K-pouches are relatively rare (only a short list of surgeons even know how to perform the surgery) you may well have issues finding someone local to treat you in the event that something goes wrong. Is it worth trying?

The J-pouch is most peoples’ preference because it removes the entire colon, fashions a resevoir pouch (J-pouch) out of your small intestines and then reconnects the pouch to the anus so that waste exits the “normal” way, albeit one can expect to need to empty their pouch at least several times a day so it’s still not ideal. The J-pouch generally requires at least 2 surgeries, though rarely will be performed all in one surgery–but that is not best practice. Many people require 3 surgeries, and that would be me. First they’d remove my diseased colon and give me a temporary illeostomy for several months. Then the second surgery they would create the J-pouch. Then several months later the final surgery would close the illeostomy and connect everything together. Three surgeries is a lot. Then there’s the chance that there would be lingering disease in my anus and it would either require me to take meds like I do now or have a 4th surgery to remove the J-pouch and go back to an illeostomy (or possibly convert to a K-pouch). Then there is “pouchitis” which some people (a lot) end up having “chronic pouchitis” and this requires them to be on antibiotics and who the hell knows what else to deal with it–not f*cking cool. I worry that I would be one of the “lucky ones” to have endless issues with the J-pouch, and what I really want (after 13 years of this disease) is to have surgery and be DONE with it.

Thinking about all this stuff is enough to make my f*cking head explode. On one hand, I’d rather have control over when to have surgery and where (such as traveling to Cleveland Clinic) and if I wait until I’m so ill that surgery is my only option then I may end up with a mediocre surgeon and far more complications. But on the other hand, I’m scared. I don’t want to regret whichever surgery option I choose (and FTR surgery is inevitable, just a matter of when). I have discussed it with Mr. MLACS but he’s not got much of an opinion except that he supports me having whatever surgery I choose. I wish my Mom was alive. Not because she would tell me what to do, or hold my hand, but because she would make me feel brave and go forward with whatever surgery without fear or regret. And I could count on her to help me and take care of BG afterwards. I can’t dwell on the way I wish things were, but I wish she was here.

So then, what is my plan?

  1. Humira + Imuran…except I tried the Imuran this week and it made me feel AWFUL. So now I’m going to try 6MP. If I can’t tolerate it at all then I will be so f*cked. Pray for me.
  2. Stelara + 6MP…or if I can’t handle 6MP then Stelara alone…maybe…or…
  3. Surgery

My goal is still to get into remission and off prednisone with drug therapy, and then try to have another baby. Or maybe even to try to have a baby with an illeostomy–but I don’t think I’d try it with a K-pouch or J-pouch simply because they would take awhile to heal and I’m about to be 38 years old, etc.

This…this is what I am working with right now. I actually left my appointment on Monday feeling sad, but relieved. The drugs might work, but if they don’t then surgery could be a great option–provided I don’t end up with complications. I mean, even with complications most people say they would do it again, so…

XOXO,

MLACS

 

 

Being Transparent About Chronic Illness

I’m in need of a new hairstylist since we moved to the South and I went for a consultation with one today. I told her that one of my considerations is that I’m chronically ill. For me, the way that affects my choices about hairstyle are:

  1. I have limited energy and often do not style my hair.
  2.  I’m on a medication (prednisone) that has changed the shape of my face from oval with defined cheek bones to round and puffy. I’m self conscious about that and need a style to compliment my current face shape.
  3.  This medication (prednisone) causes me to have night sweats, so I wake up soaked with my hair matted to my head–one more reason not to bother styling it.
  4. I need to be able to wear my hair in a ponytail due to reasons 1 & 3. When I first got sick I had just had my hair cut and it was too short for a ponytail and it was a nightmare. So I want a cut that is stylish but it can’t be too short.

I had to take BG with me to the salon so the stylist knows I’m also a mom and I told her that I need something low maintinence because I don’t have the time or money for anything high maintinence, though I wish I did (I used to…). I asked if she can do evenings or weekends so that my husband is available to watch BG, as hair is expensive and a babysitter for several hours on top of it is more than I’m willing to spend on myself at this time (especially because of all my f*ing medical bills).

The stylist was awesome–so easy to talk to, knowledgeable, and passionate about her work. I loved her suggestions, but they are beyond my budget–I said $150-$175 is my comfort zone. I guess I am really out-of-touch with reality because stylist said most of her clients will spend about $250-$275 per visit (I assume this is before gratuity and not including purchasing the recommended hair products). Stylist said many of her clients don’t need to return to the salon for 6-9 months provided they use the right products to maintain their color, and with that in-mind I can see the rationale of spending $300 a pop–$600 per year–on services. Mr. MLACS probably spends close to $30 every month for a haircut + gratuity, so about $360 per year, and that’s for the most basic services. So is $600 per year on hair too much for me to spend on premium services? I know some women who color their own hair at home. I know others that spend $1200 every few months for extensions. So I’m not sure what the “average” woman invests in her hair. In any case, I felt sheepish about it but I asked Stylist to work within my budget, so maybe not her trademark balayage, but some blonde highlights that hide my gray hair and a cut that is stylish but functional. Stylist said she had better ideas and would give me $250 for $175 to get me “hooked” (ha ha) because she has a vision and it is ombré. I said I certainly don’t want to take advantage of her and please only do what she is comfortable with. But she waved me off. So I have an appointment scheduled. I hope she’s not just offering the extra services because I told her I’m sick–I never intend to play “the sick card” and would be mortified if that’s what happened here.

I also went to the dentist today. I have gingivitis that is aggravated by my autoimmune digestive issues and the medications I take that dry out my mouth. I was also having constant mouth ulcers that were deep and incredibly painful. My previous dentist just kept telling me to floss, and since my gums were perpetually sore and inflamed and bled easily, and my mouth always full of ulcers, it wasn’t something I wanted to do.

I established care with new dentist in November and his treatment plan has changed my life! He gave me an iodine mouthwash that really helped clear up the mouth ulcers. Then he told me to start rinsing my mouth with hydrogen peroxide every day. His dental assistant went one step further and suggested I use half water + half peroxide in my water flosser. The dentist also told me to floss with dental floss, uhg. I followed directions except that I used my water flosser 2x per day and still didn’t use dental floss. After a month I was amazed when I looked and saw all my gum inflammation was gone! I wasn’t bleeding anymore when I brushed! I hadn’t had a mouth ulcer since starting the treatment!

Then I got sick. I actually had to cancel a cleaning scheduled for February and straight-up told them I was very ill and would call to reschedule when I was well enough *to drive* myself to the appointment. They were like “Uh, sorry you’re sick…call us whenev”. It was awkward but I really couldn’t be bothered to come up with a chipper lie on that day.

But no matter how sh*tty I have felt, I have kept up with my dental treatment plan. And today I got to experience the fruits of my labor–a pain-free teeth cleaning with ZERO bleeding! Omg! I cannot even explain how proud and happy I am. And grateful to this dentist. At my first visit I had asked him about doing clear correct braces (cheaper version of invisalign) and he said I couldn’t even consider it until my gums were healed. And I asked him in all seriousness if he thought that was even possible, since they had been in bad shape for years. He said yes of course if I followed the treatment plan. So I asked today if I am a candidate for braces and he said yes! But then my bubble was burst when I was told it would cost $6500 up-front. I also asked about porcelain veneers but when the dentist said $17,000-18,000 with plans to replace them every 20 years, I nearly choked. Sheesh. I remember my Mom making payments to my orthodontist, but nowadays dentists/orthodontists exclusively accept cash or credit up front. And they encourage you to apply for “care credit” but let me just be honest and say that my credit score is sh*t and I’ve been previously denied, so I didn’t bother applying today. FYI, I am working on my credit but it’s a slow process because *defaulted student loans*. I’m embarrassed about that but lots of people in my generation got f*cked by taking out too many student loans. And of course I have a few old medical bills in collections because *chronic illness*. So I will not be getting clear correct braces anytime soon, and that bums me out. I guess if it was that important to me then I would find a way to earn the $6500. But I have no ideas how to do that as a SAHM because I refuse to do any P2P marketing (no plexus/rodan + fields/lularoe/lipsense/etc.) and I don’t know what I could make to sell on etsy and those “work from home” things are all scams and clearly I am not in a position to go to work (at least not for “fun money” but if my family needed me to I would).

I know it’s ironic that I’m sitting here worrying about my appearance when I have a rotting colon. I definitely struggle to feel like I’ve “earned” the right to spend money on myself and my appearance when I’ve been laying on the couch and usurping my family’s time and money with my medical appointments and bills. I’m just trying to feel like my old self–trying to feel “normal”, look “normal”, act “normal”. But also coming to terms with the fact that chronic illness is part of who I am now, and I’m tired of glossing over it. There has to be a balance, right?

XOXO,

MLACS

Chronically Cray-Cray

I feel like I am losing my mind.

It’s the drugs. I have been doing better this past week–less blood, more stool, less urgency, less cramps (didn’t even take any Bentyl). So I decided I needed to try dropping my Prednisone from 40ng to 35mg yesterday.

Big mistake. HUGE.

I took my 35mg of Prednisone circa 3am Monday morning and went back to sleep, then woke up feeling tired (like chronically ill fatigued not ordinary tired), anxious and disoriented. It’s hard to explain but maybe a good analogy is I felt like an autistic kid with SPD in the middle of chucky cheese. I was freaked the f*ck out.

So what this tells me is, I was in withdrawal from that tiny 5mg Prednisone drop–this is typical. And it’s awful. But it has to be done.

I warned Mr. MLACS that I was “short on spoons” (click HERE to read about the ‘spoon theory’) and basically in survival mode. My goals were simply to:

  1. Take BG to her *very first* dentist appointment at 10am
  2. Not yell at BG for doing obnoxious toddler things that spike my anxiety and wear me out

I also wanted to sweep the incredibly dirty floors (have not even begun to catch up since my hospital stay 3-ish weeks ago) and do some laundry…maybe fold it (ha! who am I kidding? It lives in a heap on top of the dryer) and make something for dinner. Mr. MLACS told me to take it easy and just do what I can. Love that guy.

So I tried to get BG to watch cartoons or play independently while I tried to calm myself down and get my bearings. But she is a toddler and doesn’t understand when mommy needs space and quiet. I snapped at her quite a bit. I just needed to be left the f*ck alone. I just needed to stop sweating and feeling waves of panic wash over me. I just needed to escape. But there was no escape.

And BG wanted my attention. So I did my best. I talked to her about going to the dentist. I think we may have read some books or played something. And in between interacting with her I would ask her to be patient and “give me a minute”. But what I really meant was give me 10 minutes and toddlers don’t have that kind of patience so BG would start jumping on the couch or spilling water everywhere and I would start to lose my sh*t. This was our morning.

Then we had BG’s dentist appointment at 10am. It was hell trying to get us both ready, as I was physically dragging and when I have anxiety I am basically stuck to the couch, too overwhelmed to self actualize. If BG hadn’t been so goddamned annoying I probably wouldn’t have been able to pry myself off the couch, so we have her to thank for any and all productivity yesterday.

BG did very well at the dentist! So did I. To my relief we were the only ones there and the office was cool and quiet, which helped me to stay calm. There was a train running on a track along the perimeter of the room near the ceiling. BG is super into trains so she says “Alllllll abooooooard! Choo choo!” when she sees it. But when it exited to the next room and was out of sight she would whine and moan–that was like nails on a chalkboard. I very dryly told her the train will be back but she wouldn’t quit whining until it entered the room. Uhg. And I was trying to fill out her paperwork so her distracting me–when I’m anxious and have “brain fog”–makes this much harder than it would normally be. But I mean, what is “normal” for me anymore? I don’t even f*cking know.

Anyways.

So the dentist was a very gentle and soft spoken man. He had me hold BG facing me and then lean her back so her head was on his knees and he quickly and gently examined her mouth. Says her teeth look great but she has some plaque and we need to brush thoroughly along her gum line. I’m embarrassed to say that we let BG brush her own teeth and I had a feeling this was insufficient but she is happy to do it and I didn’t want to hold her down to get the job done. But I suppose we’ll have to because I also don’t want her to have a mouth full of cavities at 5 years old like I did.

BG did cry during her exam but the lovely dental assistant handed her a bag of “goodies” when she sat up and that calmed her right down. I was so proud of her because she said “thank you” to everyone and told everyone goodbye as we were leaving. I was drained but offered to take BG to the park. Instead of running and climbing she mostly played pretend–handing me handfuls of mulch to “eat”–and picked up rocks. She’s super into rocks. I’ve had to start limiting the amount of rocks she can take and keep. There were other moms with kids and I spoke to them but certainly wasn’t in the frame of mind to make friends. One of those instances where being a “chronic mom” is isolating. Luckily BG was disinterested in the kids and we stuck to ourselves, “eating” mulch and hoarding rocks under the playground equipment like a couple of trolls. It was just what I needed.

I fed BG snack at the park and we set off for home to make lunch and take a nap. I actually pulled together a good lunch for us and I felt good about accomplishing the dentist, park, and lunch. Then we cuddled up and took a 2 hour nap together. I felt a bit better when we woke up but still fatigued. I put on cartoons and decided to sweep up the floors. You should have seen the massive ball of pet hair that materialized. I’m disgusted. And I just cannot keep up with the house cleaning and neither can Mr. MLACS. I *refuse* to let our dream house get filthy like this once we move in (in August if it goes according to plan). So we will have to budget for a house cleaner to come at least bi-weekly. I feel so bad about that but I just can’t do it myself, at least not consistently–I don’t have enough spoons and I want to use my spoons for other things, like cooking and taking BG to the park.

I asked Mr. MLACS to pick up some things from the grocery store on his way home and threw dinner together–marinaded some chicken breasts in olive oil/lemon juice/lemon zest/salt/pepper and had Mr. MLACS grill them, then we assembled salads. BG does not eat salad. Also the dentist confirmed she is cutting her 2 year molars–that sh*t hurts. So I let her eat an entire container of cut up strawberries for dinner. And a popsicle.

By this time I had calmed down (it only took ALL day). Mr. MLACS was great and totally took BG off my hands so I could chill, and it really helped.

I was exhausted when we went to bed but couldn’t get to sleep until almost 1am. Then was awake from 5am to 6am to toilet and wait for my Prednisone to kick in. I tried 35mg again today but in addition to feeling like sh*t and mentally unstable, I began to have increase in pain and blood. So I gave up and popped that 5mg of Prednisone around 8am. And it helped. But this is bad bad bad that I cannot even drop 5mg at this high of a dose. My GI is probably going to say the Humira isn’t working and tell me to try a different biologic. And I don’t wanna.

XOXO,

MLACS

 

 

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