I Did It! I’m An Ostomate!

I had my surgery late Tuesday afternoon on October 17th, 2017. I woke up to find I have several scars, a stoma, and a colostomy bag, and I was…

Relieved! Happy! Ready to jump up and go live that slice of life I’ve been sidelined from due to chronic illness!

I’ve been walking, eating low residue foods, and emptying/applying my own colostomy bags. I’ve been conservative with my pain meds and I’m ready to bust outta here tomorrow!

Mr. MLACS and my uncle drove me to surgery and stayed there all day and into the night because they didn’t even take me back until 4pm or so. I told them they should at least leave and go eat some delicious food, since I was starving but couldn’t eat. I told them if the shoe was on the other foot I would totally ditch them to go to the thai restaurant around the corner. But they stayed close by and ate at the hospital cafeteria.

The surgery went well and only took 2 hours vs. the usual 3-4 hours. I was told my colon was one of the worst the surgeon has seen–that was validating. CRS said he believes pathology will reveal I have Crohn’s Colitis, but we won’t know until next week.

I have ordered lots of samples of ostomy bags and accessories, so excited to try some stuff out–I haven’t particularly like the first 2 bags I’ve tried, mostly because they are one-pieces and the one I have now has a filter that gets super messy and takes for-ev-er to clean (sensura mio one piece). I will have to try a 2 piece tomorrow, hate to irritate my skin by changing it so much but I’m uncomfortable with the sensura mio one piece. It’s going to take some trial and error to find what I like.

I’m on A LOT of corticosteroids and cannot sleep (it’s 2:30am) even on percocet. I’m also very bloated from the steroids and cannot wait to get back to my 30mg oral dose and start tapering! Before long (God willing) I’ll be down to just 2 pills per day + my supplements! That’s kind of amazing.

I feel SO MUCH better with the colon gone–there is a tiny bit left actually–but I’ll deal with that later and my CRS said it shouldn’t give me much, if any, trouble.

I want to train for a marathon. I want to clean my house all day and play with BG without having to lay down every 15 minutes. I want to go back to nursing school. I want to travel. I want another baby. I want to do ALL THE THINGS!

It’s going to take some getting used to, but I think I will make my own way and figure it out. Being an ostomate is part of my destiny, and I’m going to embrace it and be the best version of myself–even better than before, I think.

XOXO,

MLACS

Advertisements

It’s A Miracle!

Mr. MLACS finally started to sound like himself on Wednesday of this week, exactly one week after his SCA. His short-term memory is still recovering but he is otherwise the man I married.

He had a defibrillator implanted yesterday (Thursday) and did well, now he just can’t lift his left arm past shoulder height for 6 weeks.

I took BG to see him in the hospital on Wednesday and we brought him home today!

I brought super fancy donuts for all the nurses in the ICU and on the regular floor, to thank them.

But I didn’t get any donuts for us.

I have a good friend who is a fitness consultant to the military. She’s amazing. She made a nutrition plan for Mr. MLACS.

Now I’m trying to get myself ready for my surgery on Tuesday Oct. 17th.

I’ve got to get this colon out, I cannot take it any longer. I’m literally sitting on the toilet right now muffling screams, it hurts so bad. And the Prednisone is driving me nuts, I’ve got to get off of it.

I almost had to go to the ER this week because I spiked a fever of 102.3 on Tuesday evening and since I’m on prednisone I’m supposed to go whenever I have a fever and/or feel particularly bad. But I was so exhausted from being at the hospital already, that I begged the on-call GI to let me wait until morning and see if my fever would break, which it did. But I have felt weak ever since. And my incontinence is worse–I’m back to wearing depends 24/7, even at home when I’m 5 feet from the toilet. If I could rip my colon out myself, I would.

So please continue to pray for our family, that Mr. MLACS makes a full recovery and that my colectomy goes smoothly, without any complications, and that I heal quickly afterwards without complications.

XOXO,

MLACS

The Aftermath: Traumatic Brain Injury

I am grieving right now, because Mr. MLACS has come so far…but he is not himself at all. And nobody can say how much he’ll recover or how long this might take.

His voice is different. It’s weak and soft and I don’t recognize it.

His personality is flat. Like he’s stoned, but he’s not on any mind-altering drugs anymore.

His facial expressions are odd. He has this smirk/smile that he does at inappropriate times and it creeps me out.

He remembers A LOT, which is good–his long-term memory is quite good.

But his short term memory is very bad.

And he is delusional.

He imagines things happened that truly didn’t or sees things that aren’t there (ordinary things like he thought his tablet was on the table).

I gave him his cell phone last night and he hasn’t texted or called. When I go see him he doesn’t ask me how BG is or what she’s up to–but he says he does want to get home to her…

But I can’t imagine him being home like this.

I can’t handle it.

It scares me to death.

I can’t have him around BG like this. If I’m freaked out by the changes in him, I can only imagine what it would be like for a little girl.

And I can’t trust him.

So far he’s shown no aggression or sexual inappropriateness but I worry. I can’t help it.

I won’t leave him alone with her. I can’t.

I don’t want him driving anytime soon if ever, and I can’t let him drive her because what if this happens again?

I feel like his death is imminent. I am scarred and have PTSD from his heart failure in 2014 and now this apparent heart attack (though docs are not sure if it was a heart attack, as his heart went into v-tach and then v-fib).

I want to run away because I can’t take this anymore. I want to protect our daughter and shield her from this pain and future pain. It’s her pain that kills me–she doesn’t understand why her daddy is gone. And also she is out of her element because…

We just moved into this new house two weeks ago. It is big and feels foreign to me. It’s full of bad memories, of the fire that happened and now this. I hate this house. I want out. I want to move back home to the Midwest.

You know we just moved to the South a year ago in September. I’m not comfortable here.

I need comfort and familiarity. People here have been very nice and reached out to help but they are either aquaintances or strangers to me. I’ve never gotten used to living here–really the trauma of the house fire, me being sick, and Mr. MLACS’s job being so demanding has kept me from liking it here. It’s also very conservative and that makes me uncomfortable as well.

But Mr. MLACS is the sole breadwinner. His job is here. They will make acommodations for him. He has benefits–including life insurance that I would desperately need when he dies, and he is not elligible for private commercial life insurance, for obvious reasons. So to move, he’d really need to get a different job in order to keep his benefits.

Or, he could end up on permanent disability. I doubt that though, because his functioning seems very high–for someone who died 5 days ago.

People tell me to be patient, he will get better (though how much better is a mystery) and don’t think too far ahead…

Seriously, that is the worst advice. I mean I appreciate their faith and optimism but I need to re-route my family’s future and that starts NOW.

So many things to worry about.

I need to have my surgery so I can feel better and have the stamina to deal with all of this. Then…

I need to figure out what to do–go back to school for nursing? Become a real estate agent? I want to be self-sufficient.

Sell all BG’s baby stuff because it’s just impossible to even consider another pregnancy and child under these circumstances? This makes me want a sibling for her even more–someone to weather these times with her…

My sister is currently here caring for BG so I can go to the hospital and be with Mr. MLACS. It’s not perfect–she smokes cigarettes and I hate having that around BG. Also she is messy and I am currently very anxious and OCD. But I’m so grateful she came to be with us. And my aunt and uncle are coming when my sister leaves sometime this week. I have not spoken to Mr. MLACS’s mother or sister and do not intend to involve them, as we have not been in contact for 2+ years and I do not want them involved with BG. I did speak to Mr. MLACS’s brother though and I dont know when but he said he plans to come see him.

There’s more but to summarize, I’m in a very fucked up situation. But it’s going to be ok–I’m going to take care of myself because I have to and make sure BG has a magical childhood no matter what. I’m going to do right by Mr. MLACS but BG comes first and he would agree. I love him and he loves me, but she is our world.

I am doing my best. That’s all I can do.

XOXO,

MLACS

 

 

Mr. MLACS Had A Heart Attack

He’s been under a lot of stress from work, moving house, and having a sick wife. But he showed no signs of distress.

When he was hospitalized for heart failure in 2014 he had edema (he shed 60+lbs of water in hospital). He was worn down and sick and not acting himself.

But today was like any other day. He texted me “OMW to truck” as he was leaving work and I was busy on the phone arguing with my insurance, so instead of calling I just texted to ask him to stop by the store for milk and cheese for omelets.

And then I got impatient about 30-40 minutes later and called…and his boss answered his phone and told me he “fell in the parking lot”, which to me sounded like he twisted his ankle. But then it came out that he was unconscious…

As it turns out, a woman was getting into her car and saw him putting stuff in his truck, and saw him collapse. She went to check on him and called for help. A man came over and started CPR. The company first response team brought the defibrulator and he was shocked twice before the ambulance arrived. I know he was shocked 4 more times after that. He was taken to our super shitty small-town local hospital and they put him on life support and ran tests. I did not want him admitted there and luckily they decided to send him to the better hospital without me having to fight.

We then had to have him transferred to better hospital’s ER, where we have been for circa 6 hours, and now they are taking him to the ICU and I’m waiting for him to get settled in his room.

The ICU doc told me they need to find out what caused it. That Mr. MLACS is lucky the guys at work acted fast, because that’s what saved his life. And that he may be brain dead or have brain damage but can’t say much for 72 hours. After he left Mr. MLACS’s sedation wore off and he started to wake up–I know he recognized me and I just told him to stay calm, I’ll explain later but right now ppl are helping him get better. So he’s not brain dead, praise God!

BG is at a neighbor’s house–I’m most proud that I stayed calm when I spoke to Mr. MLACS’s boss and just told BG we were putting on her jammies and gathering her things so she could go play next door (they have 5 yr old twins and a 1.5yr old) and she was totally stoked, none the wiser. I so badly want to be with her right now but I know she’s ok.

I have more to say but basically my husband died tonight, but by the grace of God and the swift actions of his co-workers, he is still alive. At first docs said he could be brain dead, but about half an hour ago his sedation wore off and he woke up and I know he recognized me and responded to me asking him to stay calm (so as not to pull his breathing tubes out). So he is NOT brain dead! Oh God, I am so relieved. He is still with us. But time will tell what if any brain damage he sustained. The ICU doc says they need to figure out what is going on with his heart, and that he will probably receive a defibrulator–which I hope so because his older brother has one and it has saved his life multiple times.

I am so grateful he is still here.

And obviously, I’m postponing my colectomy indefinitely.

Please send your prayers and warm thoughts for Mr. MLACS’s full recovery.

XOXO,

MLACS

Aloha, Colon–Booked My Colectomy and Not Looking Back


So the obvious–I’m f*cking done being sick. Things have been worse the past couple of weeks, owing to our moving house (stress), my Stelara is wearing off (like clockwork), I lowered my Prednisone (down to 20mg), and the last f*cking straw–wait for it–I had the flu last week (just shoot me).

After a couple days of toileting 12+ times per day, mostly blood, straining (felt like my body was trying to expel my colon with brut force), dehydration, pain, weakness.etc. I called up my IBD Nurse and said “Listen up–I am well and truly ready to schedule surgery. Tell IBD Specialist she won’t need to have ‘the talk’ with me on Monday and we can just get down to business.” And I meant every word. Something in me just ‘clicked’ and I knew I was meant to have the surgery, and I felt relief and resolve to move forward.

So I met with IBD Specialist yesterday as well as the Colorectal Surgeon (CRS) and the Ostomy Nurse. IBD Specialist said “Just in case you’re interested, you could try Entyvio, Cimzia, or a clinical trial drug”, but I shook my head and said “Nope, drug therapy is not for me. I failed 3 biologics–they all worked but wore off too quickly because I metabolize them too fast, so drugs are not the answer”. Which IBD Specialist wholeheartedly agreed, and basically wished me well and sent me off to the CRS. I asked the CRS a few questions and made it known that I may look like hell *now* but I used to be hot, so minimal scarring would be ideal, as I aspire to be an athlete when I’m well again and to look good naked. I’ll get into the logistics of things in another post.

I saw the Ostomy Nurse, got marked where my stoma will go, and am now testing out a Coloplast mio bag. Testing the bag out is a game changer! Most people don’t but I think everyone should. It’s not bad at all–I forget it’s even there! Easy to conceal under clothing. BG thinks it’s cool. I was building it up in my head that it would be strange and awkward, but it’s not.

Of course then today my colon has been much better and I’m like “WTF colon–quit playing games” but I am still ready for surgery. Mr. MLACS only has to use a week of vacation and they’ll let him work from home the second week, so he doesn’t need to file FMLA. He and BG will stay in a hotel near the hospital (since it is a 2hr drive from where we live) until I’m released.

Ok so so so exhausted, but just wanted to let you guys know “the scoop”.

T-minus TWO WEEKS until surgery!!!

XOXO,
MLACS

September 27th, The Day I Legally Wedded Mr. MLACS Because I Needed Health Insurance

On this day, 6 years ago, I married Mr. MLACS in a very awkward wedding ceremony at a court house in a small town in the BFE. Now for the record, Mr. MLACS had already proposed in June and we had planned a spring wedding. But I was having a UC flare that wasn’t responding well to steroids, so my GI at the time was suggesting Remicade–and I had no health insurance due to working non-traditional jobs and having a pre-existing condition (UC). Remicade infusions were like $20,000. And Mr. MLACS had very good health insurance through his employer. So without any real planning or fanfare, we just did it. And then had a celebratory dinner at some chain restaurant. It felt kind of twilight-zone-esque.

We told only our parents, as I was determined that my disease would not ruin our “real wedding” in Hawaii. We mostly ignored that we were technically married. But it added a calm to our relationship, knowing we were officially stuck with each other.

We had our dream wedding in Hawaii in spring 2012 and I didn’t end up needing Remicade until a year later. And then it stopped working pretty quickly so I only had maybe 3 infusions.

Fast forward to present-day…

Yesterday was our “marriage anniversary”. And here I am, sick as a dog because I have the freaking flu on top of my flare getting worse again because I lowered my Prednisone to 20mg and the Stelara shot is wearing off.

I had called my IBD Specialist the day before to inform them that I am ready for surgery.

Yep, it’s happening.

I’m having a (most likely permanent) ileostomy in the near future. Will see IBD Specialist and my CRS on Monday and schedule the surgery.

I just can’t go on like this. Or if I can, then I don’t want to.

I’m sort of freaking out but Mr. MLACS has been cool as a cucumber, as though he is unphased. At first I wanted a more emotional reaction from him, I mean, this is a BIG deal. But now I’m ok with Mr. MLACS remaining neutral because then I can be a basket case knowing he can handle everything.

So here we are, 6 years of marriage and 7 years of being together, and I’m having my colon removed. I actually did not see this coming. But it’s ok. I’m as ready as I’ll ever be.

XOXO,
MLACS

A Tale Of Two Boobs: The Finale

So for those of you who missed the first few installments of “A Tale of Two Boobs”, this is a series of posts about my struggle with breastfeeding. I felt this primal urge to breastfeed my BG, and I put my body through hell to make it happen.

Well now, 2.5 years later, I have finally weaned BG.

I haven’t nursed her at all in 3 days. It was time–I had only been nursing on my “business boob” for months, as my “casual boob” was never a good producer anyways. And the milk in “business boob” had been reduced to a trickle within the last few weeks. I don’t know why exactly, maybe my hormones shifting as I’m weaning off the Prednisone. Maybe the Stelara. But both BG and I were ready and in a good place to stop, so it doesn’t really matter what the catalyst was.

As I lay here with cabbage leaves tucked into my tank top (a trick to help dry up your milk), I can reflect fondly on my breastfeeding relationship with BG, without any tears. I’m ok that we’re done breastfeeding. I feel like “my work here is done”. Often it’s emotional for moms to quit breastfeeding, and after how emotional I was and how desperately I wanted to do it, you’d think I’d be heartbroken. But I’m not.

I feel relieved that weaning happened organically, and did not end in dramatics (as you know I am prone to dramatics). I’m grateful that my chronic illness didn’t dictate my breastfeeding relationship with BG–I breastfed her through all the turmoil during the past 8+ months of my flare. It would have been traumatic if my milk had dried up while I was hospitalized. This flare shook up my relationship with BG, and breastfeeding was one thing that I was able to continue to do for her even when I was otherwise incapacitated. It was our foundation.

I shared countless tender moments with BG while breastfeeding. I will always treaaure the memories… sitting in the rocking chair in her nursery, light streaming in, rocking for hours and just staring at her in my arms (propped up on the boppy pillow–we got more than our moneys worth outta that thing). I remember breastfeeding her under the trees on the beach in Costa Rica, while a mommy monkey and baby monkey played right above us, and the sound of the ocean lulled us to sleep. There were also lots of backseat breastfeeding sessions in the car–sitting in the target parking lot. And all the times BG needed comfort–when she was scared of a thunderstorm or in pain because she was teething–that I was able to comfort her by breastfeeding her. It was such a relief to me to be able to pop a boob in her mouth and instantly make her feel better.

It’s been such a journey. I didn’t really even want to breastfeed before BG was born–it just seemed so foreign to me. But from the moment they placed her on my chest it’s all I wanted to do, as a way to love and protect and provide for her.

Through excruciating nipple injuries and mastitis. Through a struggle with low supply and taking ALL the herbs and finally, Domeperidone. I have no doubt that all the antibiotics I took and the Domperidone contributed to my current flare. But I don’t regret any of it.

My BG is healthy as can be–only had a handful of colds and I nursed her through those. I know that my milk helped to build and support her immune system. I believe that she will be spared the autoimmune issues that I am plagued with. That’s priceless to me.

I really don’t think that everyone should struggle to breastfeed the way I did. Obviously, there are plenty of healthy, happy kids out there that were given formula. We as mothers have to follow our own paths and no two will be exactly alike. I never, ever want to make another mother feel bad for how she feeds her baby!

But for me, I am so grateful that I was able to breastfeed BG. I never imagined how difficult it would be–the amount of tears that I would shed as I struggled through pain, frustration, guilt and worry. I couldn’t fathom the amount of joy I would feel as I cradled her in my arms and breastfed her for countless hours…I wouldn’t trade a single second of it.

But it’s ok that we’re done. I still cradle her, carry her, hold her and rock her. She still falls asleep nestled in the crook of my arm with her head on my chest. We say “I love you” to each other 1,000x per day and we smother each other in hugs and kisses. We have evolved, but no love is lost.

XOXO,
MLACS