My Potterybarn Life

So of course the house won’t be finished on schedule. My gut instinct (and plenty of experience dealing with contractors) told me as much. They said it will be a “couple more weeks” and we can deal with that–but no more than that.

Meanwhile, I have been entertaining myself by shopping both online and in stores. It’s been quite a thrill! Mr. MLACS and I agreed on a budget and he has given me carte blanche to do as I please. I’m happy to say that I have been able to buy a lot of my first choice high-end items (potterybarn, restoration hardware, crate and barrel, west elm, williams sonoma, etc.) and then some lovely modestly-priced items as well (target, wayfair, hayneedle, home goods, etc.) and even some custom pieces from etsy and local artists.

But the “pièce de résistance” is my PB comfort slipcovered custom sectional sofa in “everyday linen”. I have always dreamed of having a potterybarn slipcovered sofa and I ordered exactly what I wanted–even upgraded to the feather down filling.

I also bought a PB leather recliner that I adore because it is very stylish, but it’s really for Mr. MLACS–mostly as a decoy so he doesn’t sit his greasy a** on my PB couch when he gets home from work or comes in from playing outside with BG and the dog. Mr. MLACS has been wanting a recliner for ages, so it’s win/win for both of us.

I see my facebook newsfeed full of fiery indignance about politics/politicians/social injustice/other very important things that I should be more aware of. And I wonder if I’ve truly become a shallow person, because I give no f*cks about any of it. None. I watch cartoons all day and sing songs and play playdoh and buy groceries and sweep up gobs of pet hair and cook dinner. But do you know what really inspires me??? What really matters to me???

My muthaf*ckin’ potterybarn sofa sectional. That’s what.

Sorry to disappoint you if you thought I was better than that. I’m not.

I have literally spent hours agonizing over which throw pillows to accessorize my couch with. HOURS. Who does that???

Me. I do that.

All the pinterest’ing and online shopping has been great because it keeps me off social media (I love/hate social media–mostly hate) and gives me something to look forward to. I feel giddy every time the doorbell chimes and I see the UPS/FedEx/USPS carrier making haste toward their vehicle, because I know that means there is a special delivery for moi! BG gets excited too and loves to open the boxes with me and reveal the “prize” (BG’s short for “surprise”) inside. It never gets old for either one of us.

I could sit here and wax poetic about all the faaaaaaabulous things I’ve recently acquired (the boxes of which are cluttering my foyer and the UPS guy has to wonder WTF is going on because I can barely open the door).

But let me also enlighten you about the current state of my colon.

I will see the IBD Specialist this Thursday (so 3 days from now). I need to discuss some things with her:

  1. I’ve still got this perianal fistula. Lately it itches a bit–is that good or bad? It doesn’t hurt though. And I’m still slightly incontinent (anal leakage). So I’d like to see one of their Colorectal surgeons and get their opinion. Also, I want to know if they will do a laser fistulotomy. And if they are capable of doing a colectomy laproscopically. Sh*t I should probably already have asked, but did not have the presence of mind to even consider until recently.
  2. The Stelara is working, but I worry. I just hit the 3 week mark post-infusion and I’ve read the half-life of Stelara is 3 weeks. I woke up today with a bit of blood and mucus. Is it wearing off already? Or is this a blip on the radar? My concern about it “wearing off” is legit IMO because I “failed” Humira due to my serum levels never accumulating to theraputic levels–because as IBD Specialist phrased it, my body “clears it too quickly”. So, like, maybe it’s clearing the Stelara too quickly? They have me scheduled to take my Stelara injection 8 weeks from the initial infusion, but they could move the Stelara up to every 4 weeks. My question is: what has to happen for them to give me Stelara every 4 weeks?
  3. I’m very determined to wean from the prednisone, and I’m down to 27.5 mg, but I was supposed to drop to 25 mg today and decided against it due to the blood and mucus. Frustrating.
  4. As my prednisone goes down my weight goes up. Isn’t it ironic? Prednisone was like dexatrim for me at higher doses. I lost almost 30 lbs. And now I’ve gained like 25 of it back. I feel much stronger physically and much sharper mentally, so I’m grateful for that and I would WAY rather be chubby than sick. But, it’s still disappointing to have a fat face from prednisone and now a giggly tummy to match. This is definitely something I have some control over and I need to go back to recording my food on myfitnesspal and making better choices. However, it’s harder to make good choices when I’m tired and sore due to prednisone withdrawal–the fact is that I crave sugar. I should probably see an endocrinologist regarding my hypothyroid and adrenal fatigue.
  5. I still want to start TTC soon and I need to know the IBD Specialist’s criteria for when it’s in the realm of possibility. I don’t intend to wait until everything is peachy and perfect, because that likely will never happen. I just want to safely muddle through a pregnancy before having my colon surgically removed–this doesn’t require me to be in full remission, as half-assed remission will suffice.

Ok that’s all for now because BG is peeved that I have not been catering to her this morning and I’m afraid she’s going to complain to HR. Gotta go.

XOXO,

MLACS

 

 

 

Daring To Dream

To recap my last post:

  1. I had the Stelara infusion a week ago and it is working–no blood in my stools and I feel better all-around.
  2. I’ve gained 10 lbs and lost a lot of hair since I started taking 6MP (mercaptopurine) a few weeks ago.

Well, I spoke to the IBD Specialist’s Nurse Practitioner via email (patient portal–so convenient) and she told me to go ahead and quit the 6MP. So I have not taken it the last 2 days and so far, so good–no blood.

Speaking of blood though, I am having my first *real* period in 6 months–it’s very heavy but not painful, just uncomfortable. It’s a good thing though, because it means my body has healed enough that it is willing to consider getting pregnant.

I was cleaning the guest bathroom yesterday and stumbled across some brown paper bags of medication, and I knew they were mine not Mr. MLACS’s, but I had to stop and think of what it was…??

And it stung me like a bee–it’s Crinone (progesterone to support a pregnancy). The Crinone I had bought and paid for back in December after I met my new OBGYN and expressed to him my desire to start TTC (trying to conceive) again. Just before all hell broke loose with my UC-turned-Crohn’s. I shelled out $300+ for this stuff, and I wonder if I will ever get to use it.

Mr. MLACS has been very flirty with me lately, and instead of feeling “blah” about it, I have felt more interested. I got a babysitter and we went on our…2nd?…date, just him and me, since BG was born (28 months ago). We went out to eat at a fun Caribbean-style restaurant–I even had half a glass of wine! I had been thinking about having a glass of wine and I finally felt good enough to try it, and I was tipsy but my liver appears to be worse for the wear. We talked about having a second baby, and we are both ready to try (Mr. MLACS is most def ready to resume our sex life).

We are actually in a much better position to TTC *now* than we were before I became ill. Before I became ill, we had no idea how we were going to get our (burnt to a crisp) dream home repaired. Our marriage was strained from the stress of moving to a place where we knew no one, our house burned down as soon as we signed the contract, and Mr. MLACS’s job was grinding him to the bone, leaving me alone with BG and to do ALL the things by myself. We were miserable. And *then* I got sick and that was the “stick that broke the camel’s back”. Things had to change, there was no trudging on the way we had been. I couldn’t. And at first everything got much, much worse. But when you hit rock bottom, the only place to go is up… So things have been steadily improving. Most importantly, our trials have made our marriage stronger. Well that, and I am not afraid of being unable to parent BG through a pregnancy and another baby, because I managed to do it through my illness. Plus, Mr. MLACS really stepped up and now him and BG are very close–she doesn’t need me as much. If you recall, he was away for work most of the first 18 months of her life, so we were all used to me being the primary caregiver, even when Mr. MLACS was home. But when I got sick, he had to take over and that was actually a good thing, because they have a very strong bond now.

So there are silver linings to my illness–we are stronger as a couple and as a family. We have had time to settle our affairs and we are going to move into our new home soon–we are finally out of the stress and the depression/funk we had in the wake of our house burning down. Mr. MLACS’s job has become a much less toxic place and new management is very “pro-family”, so he is home on time a lot more and a lot less stressed.

We are in a good place to have a baby.

I just have to wean off the prednisone before we can try. I’m going to drop from 32.5mg to 30mg tomorrow. I can’t imagine that my weaning will go completely smoothly–I’ll probably have to hold several weeks at various doses, pending my symptoms. But I am daring to dream that the Stelara will quell my immune system and allow me to wean off the prednisone, given patience and time.

Assuming I can straighten myself out, then we’ll *just* have to work on getting pregnant (ha ha ha ha ha–because it was SO easy–it *only* took 6 IUI’s to conceive BG).

I mean, everybody’s gotta have a dream, right?

XOXO,

MLACS

 

Hair Today, Gone Tomorrow…

Y’all know I just spent all kinds of money getting my hair done. And now it is f*ing falling out.

I’m pissed.

My shower walls are covered in hair (as it comes out in clumps when I wash it). My shower drain is clogged. I’m pulling huge hairballs off my brush almost daily. There’s hair all over my clothes, the floors, etc.

I don’t know exactly why this is happening but my best guess would be the 6MP that I started taking a few weeks ago. The same sh*t that facilitated my gaining 10 lbs since I started it. Nasty sh*t. And I’m only on 50mg/day. That’s not even a proper dose for my size. Technically it is not supposed to “work” until you’ve taken it for at least 6 weeks, and it’s not considered very effective as an immunosuppressant at such a low dose. So *technically* since I’m no longer taking Humira and don’t need 6MP to keep antibodies at bay, my IBD Specialist told me I can quit taking it the last time I saw her. But I thought it was helping so she said “If it makes you feel better (as in, mentally better because she doesn’t believe I could have a clinical response sooner than 6 weeks) then you can stay on it until after your Stelara infusion”.

Well, I’ve had the Stelara infusion and it *is* helping. I feel better! I even felt brave enough to drop my prednisone from 35mg to 32.5mg on Monday. So hey, given all the sh*tty side effects and the fact that IBD Specialist thinks the 6MP is *moot* in my treatment, then I should just quit… right?

But I’m scared. I’m afraid that it (6MP) is working to some extent and that quitting will impede my prednisone taper. And I want off the prednisone NOW–I want my *face* back (because “moon face”).

Which brings me back to… Maybe instead of f*cking with all these drugs, I should just have the (permanent ileostomy) surgery already. I know a stoma is forever and it wouldn’t make my life “gravy” but I am pretty f*ing sick of my current set of issues and I might like to trade them in for a new set–you know, for variety.

And also, I would look horrible bald.

XOXO,

MLACS

Just Waiting…

Hey peeps! Last we spoke, I was headed to see the IBD specialist’s Nurse Practitioner. Well that happened a week and a half ago, and I figure I should update you on my colon.

  1. I am starting Stelara ASAP. But (there is always a “but”) the infusion center scheduled me *way* far out on July 12th and that is not acceptable, so together with my IBD MA (medical assistant) we are working to figure out WTF is up with that.
  2. I haven’t spoken of it in awhile, but I still have a perianal fistula. Looking forward to getting that resolved one way or another in the near-ish future, I hope–fistulas are tricky, fickle things.
  3. I managed to drop my Prednisone from 40mg/day to now 35mg/day. I accomplished this by dropping 2.5mg instead of 5mg. I plan to stay at 35mg until after my first Stelara infusion, unless for some reason I am compelled to drop to 32.5mg–but my symptoms have increased a bit so I doubt I will attempt that.
  4. The 6MP does appear to be working. My toileting is down to 2-3x per day, mostly formed (albeit oddly), with only a little blood and mucus. I do still have “urgency’ when I need to poop, but I can’t complain–I am SO much better than I was a couple months ago. Amen.
  5. Plan is still to try Stelara and then have the surgery (ileostomy) if the Stelara doesn’t work. I feel so close to remission right now–as if I’m hobbling toward an imaginary “finish line” in a nightmare-ish marathon. It will really crush me if I have come this far but can’t reach remission. Like come the f*ck on.
  6. So my current IBD meds are: 35mg Prednisone + Humira 40mg/weekly injection + 50mg 6MP.
  7. I am also still breastfeeding BG at naptime and bedtime. She is healthy as a horse and has only had a few minor headcolds in 27 months (no croup, never had to suction her nose). I really feel the breastmilk is what boosts her immune system, and since my immune system is so f*cked up I am elated that BG’s is functioning so well and will continue to breastfeed her for awhile. So at least my body is doing something right.
  8. People have been asking me if I’m going to have another kid. My answer is I want to, but I have to get better first. What I don’t bother mentioning is that even when I do “start trying” I hardly expect things to be easy or timely, because that is not my lot in life. But I really, really hope it works out.

XOXO,

MLACS

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

 

 

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

 

 

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