MLACS Mash-Up

Hey y’all…

(I live in the South now so “y’all” is how they say “you all”…I still say “you guys” because I cannot bring myself to say y’all…IRL…)

I figured I’d update. But I’m exhausted so this won’t be interesting. If you’d like to skip it then cliff notes are: the MLACS family is doing just fine.

I actually feel worse now than I did directly after surgery. Why? Because I’m weaning off Prednisone, I’m down to 20mg/day,¬†and I’m in *withdrawal*. My adrenal glands ceased function and let the Prednisone take over back in January of 2017. Now weaning creates a *deficit* in hormones (adrenaline, cortisol, epinephrine, etc.) which is supposed to “inspire” my adrenal glands to wake back up and start producing hormones again. Except, after being dormant so long, me being so sick, etc. the adrenal glands don’t simply *snap* back to life. Nope. That’s not how it works.

So here I lay, exhausted to my core yet unable to sleep properly. Anxious and feeling the urge to OCD clean the house and do ALL the things, but struggling to actually get anything done–and thus I am frustrated.

However sluggish I may feel, I have still managed to cook and bake and EAT quite a bit and I’m craving *sugar* due to my adrenal fatigue, so I feel crappy about eating all that sugar. And I’ve gained a few pounds instead of losing it like I had planned. But if you could only taste my gluten-free pumpkin bundt cake or my bread pudding with bourbon sauce–you’d know why.

Ironically, I am not cooking Thanksgiving dinner–we are going to a fancy brunch buffet at a Waldorf Astoria hotel–the menu is like three pages long and while it is pricey, kids under 3 eat free so at least we don’t have to pay for BG. I’m excited, but then also nervous because we have to drive 1.5hr+ and this is *the worst* travel holiday of the year and what if we get in a car wreck and die, all because *I* wanted to stuff my face at a fancy buffet???

This is how my mind works…

I also don’t know what to wear to this buffet because I need to dress nicely but also comfortably enough to eat my $85 worth *and* conceal my ostomy bag when it gets full. I’m considering taking closed bags (as opposed to the drainable I usually use) and just tossing them as they fill up. FTR, I’m currently using the coloplast sensura mio click and my base/flange is #10502 (I forget the bag #’s but those are less important).

My hair stopped falling out in clumps and is actually growing back (remember how I lost like 50% of my hair while taking Stelara?) which in theory is good but in reality I have all these 2 inch strands of hair sticking up all over my head and hairspray won’t tame them and not even a ball cap can conceal them–I’ve seriously considered getting a wig.

It’s hard. I want to look and feel *good* again. I want to look like I did a year ago *before* I got sick…in fact, I want to look better than that. I hate pictures of myself now. It’s pathetic–I need a family photo because we haven’t had our portrait done in 2+ years and Mr. MLACS just almost died, etc. But photos are expensive (for a good photog) and it’s a PIA to plan outfits, hair, etc. and most of all *I hate how I look* so I have not booked anything and it’s stressing.me.out.

Oh and because I’m absolutely insane I decided to host an open house on 2 weeks notice and invite everybody we know here. Am I having it catered? Am I having someone to come and clean my very *white* house? Of course NOT! I’ll be doing it all myself. Oh and I’m letting people bring their kids.

I know. I know. I’m already kicking myself.

So to change the subject, I saw my Colorectal Surgeon (CRS) yesterday for a post-op. I asked about the pathology report for my colon and I was not prepared…

It’s Crohn’s.

Without a doubt.

I really truly thought it would say UC. My disease never acted like Crohn’s–I got better when smoking cigarettes FFS!

The CRS said I can still have the j-pouch surgery but chances are I’ll have complications and eventually the pouch will have to be removed. I knew all of this already. I’m intending to keep my ostomy but I’m not ready for “barbie butt” yet. I told my CRS I really want to heal and then try to get pregnant.

Speaking of pregnant…

A lot of people (both my IF blogger girlfriends and ppl IRL) are falling pregnant and/or giving birth. I’m happy for you/them, but sad for me.

There, I said it.

I’m having the secondary infertility blues.

Which are NOT the same as primary infertility–my heart goes out to those who are dealing with primary infertility.

I mean, I haven’t even been able to *try* to conceive. So is it odd that I claim secondary infertility? I don’t think so…because lack of ability to get pregnant due to medical issues still adds up to *not pregnant*.

Ok gotta go, but I hope you all have a lovely Thanksgiving (to my USA friendsl and that everyone is getting in the holiday spirit.

XOXO,

MLACS

 

 

 

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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

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

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

I Need To Let Go But I Can’t

UPDATE:

Saw IBD Specialist and the Colorectal Surgeon this past Monday. There were some surprises.

1. IBD Specialist says if the Stelara does not work (and by “work” she means get/keep me in remission without prednisone) then she said my “only other options” are a clinical trial of a drug (cannot remember the name but started with a “p”) OR surgery…then she told me I don’t even qualify for the clinical trial so that leaves…surgery. M’kay then. I didn’t bother asking her why she changed her tune (initially she said I could try entyvio, xeljanx, etc.) because I had already resigned myself to surgery if Stelara doesn’t work. But I was taken aback that she straight up told me surgery is my only other option.

2. I have been “stuck” at 25mg prednisone for 3 weeks now and still having blood/urgency/straining/rectal pain/lower back pain/joint and muscle pain…I still have enough energy to live my life though and TBH vicodin has been my go-to for my aches and pains because all I need is 1/2 a pill and I feel fine. These aches and pains are only going to get worse as I wean off the prednisone and I don’t want to be reliant to painkillers, so I’m looking into Charlotte’s Web CBD oil. But more importantly, IBD Specialist said she’s ok if I wait 2 weeks post-my next Stelara injection to drop 2.5mg, but…

3. IBD Specialist wants to see me in 4 weeks and if I’m still struggling to wean off the prednisone then BOOM it’s time to schedule surgery. I was like “Um, I do not want to deal with this right now so can we schedule surgery for after the holidays? I mean, it takes a couple months to get on the schedule, right??” Thinking no big deal so long as I’m stable…but IBD Specialist’s eyes got all big and she practically shouted “NO!” She said she doesn’t want me on the steroids that long and surgery can usually be scheduled within 2 weeks time. I was NOT ready to consider surgery in October (but if you’ve been following my story then you know I’m just not ready for surgery, period, but trying to come to terms with it). IBD Specialist reiterated what I’ve heard many times “Most people say they wish they had had the surgery sooner after they realize how much better they feel post-surgery”. Which helps. But I’m still freaked the f*ck out.

4. IBD Specialist allowed that one of her nurses could help me give myself my 1st Stelara injection at my appointment even though it was technically 4 days early. For some unknown reason, CVS Specialty pharmacy shipped my freaking Stelara to their office, even after confirming that it was to be sent to my home address like half a dozen times. Bizarre. So btw I had to let CVS know that they flucked up and they are lucky I happened to have that appointment on Monday because its a 4 hour drive round trip–CVS said they didn’t know why that happened, oops, they are sorry *sigh*.

5. I told IBD Specialist that I always respond quickly to the biologics but my problem is they wear off quickly. IBD Specialist said there is no way she can justify moving my Stelara up from every 8 weeks to every 4 weeks because there is no evidence to support it (at this time). I told her it would probably stop the blood immediately and it did, just like last time. But my thought is: really, how much time would it buy me (to avoid surgery) anyway? So not faulting her for not trying every 4 weeks.

5. Then I saw the surgeon (CRS) and I liked him a lot! Easy to talk to and he surprised me by saying…

I MIGHT be a candidate for a j-pouch!!!

WHAAAAT?!!

Ok lets not get too excited because it probably isn’t the best option for me, but I’m thrilled that he didn’t automatically take it off the table as an option the way IBD Specialist did. CRS said that he would remove the colon and send it to pathology, and if it looked like UC instead of Crohn’s then the j-pouch could be considered.

6. CRS offered that I could have a colostomy instead of a ileostomy (leaving a small part of my colon), which confused me because I thought removing the entire colon was standard. He said it used to be standard. He then said many people prefer to take the whole colon out to avoid future disease and also because the output is thicker/smelly-er
and not as desireable with a colostomy bag. I said I’d rather do the ileostomy.

7. I asked about pregnancy with a stoma and he said it is very do-able and they take care to preserve fertility by wrapping the ovaries and fallopian tubes in some sort of gauze-like material that dissolves in 2 weeks–it prevents adhesions, which are the main threat to a womans fertility by having surgery. I said “Will I have to wait like 6 months post-surgery to try?” And he said no way, as long as things go well 3-4 months is plenty of time–this was another surprise.

8. I’m scheduled to see the CRS in 4 weeks when I see IBD Specialist, but if I’m doing well he said I should cancel. He also said I would have the opportunity to meet with his stoma nurse a couple weeks prior to surgery. I told him I’d like to actually try wearing a bag prior to surgery to see how it goes and he said he hasn’t had a patient ask to do that before but he’s sure the stoma nurse could help me do it.

So I left feeling like they “sold” me on surgery. But then started looking at the literature at home and began to feel uneasy again. That’s how it is–one minute I’m gung-ho and certain the surgery will improve my quality of life and allow me to do ALL the things. The next minute I’m freaking out about wearing a bag because it is undeniably a life changing thing.

Then I saw my OBGYN on Tuesday and he said that I should feel free to go ahead and get pregnant NOW even on 25mg prednisone because “lots of women take prednisone during pregnancy and stelara is a category B drug”. Pregnancy put me into remission last time. Maybe I should just go for it even though IBD Specialist acts like it would be criminal to get pregnant on prednisone. For all you ladies, my skin “down there” is a bit thin especially around my perinium and I have not had sex since January for fear of tearing (and because I was like, dying). But OBGYN gave me some estrace (estrogen) cream as it helps to thicken the skin and helps lubrication. So, I’m feeling a little braver about sex. But will wait until I’m ovulating to try.

9. I also saw my Dermatologist on Tuesday b/c I also have peri-oral dermatitis and some strange chin acne that the doc attributed to prednisone. Of course antibiotics would be the best treatment but I cannot take those so he gave me topical creams. This is ALL owing to IBD. Crazy how it affects our body in so many (crappy) ways.

10. My current situation: The Stelara injection worked very well…for 2 days. Since then I have been bleeding with every BM, having explosive diarrhea, cramps, straining, and urgency. My frequency is about the same and not too bad, maybe toileting 5x per day (really only morning and night when I’m home, so not inconvenient) *but* my rectum is sore every time I leave the toilet–I feel the need to lay down after a BM and that is a step in the wrong direction. My energy has been crappy this week too, and Mr. MLACS made it possible for me to just lay around all day Saturday while he took BG out-and-about. I used that time to look at various ostomy blogs, watch ostomy youtube videos, and try to wrap my head around what is happening/what is going to happen to me. I cried–not a lot–but I let out a few sobs that had been trapped inside my chest. I allowed myself to think about the “what if’s”. There is SO much to think about–I have no family here and no friends I would ask for help with BG or for myself–I think if Mr. MLACS takes off 2 weeks that will be enough for me to do light activity and care for BG…what if it’s not? My surgery is at a hospital 2 hours from home so where will Mr. MLACS and BG stay for that first week while I’m in the hospital (will need them nearby)? What ostomy supplies will work for me–what do I need to buy and how much will it cost (belts, underwear, new clothes?) What if I can’t enjoy the holidays with my family? My good friend and her son are coming to spend Thanksgiving with us–what if I can’t cook the dinner I want to make for us? (I mean I can order a meal but I love to cook and this would disappoint me.) What if I fall asleep on my brand new potterybarn couch and wake up covered in sh*t because my colostomy bag burst? What if I go through this surgery with the promise of “feeling SO MUCH better” but then I don’t???
And then I go to “Is it really THAT bad? Do I really NEED the surgery? Maybe I should just try to get pregnant…but what if I don’t go into remission and things get worse?”

ALL. DAY. LONG.

These questions and feelings bounce around in my head. And furthermore, my surgeon seems competent and my hospital is nationally ranked in the top 30 for Gastroenterology–I drive about 2 hours each way to see them because they are good.
BUT.
The 2 best hospitals are Mayo Clinic (Minnesota) and Cleveland Clinic (Ohio) and I have been encouraged by other ostomates to go to one of these places for a second opinion and if I need surgery. However, I’m too beat down right now and not ready to take the time and expense to go there. I’m afraid I’ll regret it if I don’t go and things go wrong , but I just don’t have much fight left in me.

For those of you who know me, you know I’m a fighter. So if I’m THST beat down, and I am, then something has got to give.

I’m going to speak with my EFT guru next week and I bet she will be able to help me through this and have peace with whatever decision is revealed through tapping. I can’t “unscramble” myself and I need someone to guide me.

Wish me luck. Send me prayers for peace and clarity and courage. Give me any advice you have. Any inspirational quotes (I am too overwhelmed to read a book right now though). Point me towards ostomate blogs. Thanks in advance for your support.

XOXO,
MLACS

It’s Still An Uphill Battle

Hey guys. Things are ok but not great.

  1. Our house is still not finished, but they said it will really REALLY be done by the first weekend of September. It damn well better be, or they will have to answer for it.
  2. I saw the IBD Specialist a couple weeks ago and she pushed me to wean off the Prednisone quickly, regardless how I felt. I had been having symptoms again (blood, mucus, urgency, frequency) since 3-4 weeks post Stelara infusion. And as I dropped the Prednisone from 27.5 mg to 25mg, and then 25mg to 22.5mg, my symptoms continued to worsen. I “waved the white flag” and messaged the Nurse Practitioner after 2 days at 22.5mg, because I felt awful (fatigued, body aches) and moreover I was back to *running* to the toilet several times per day, straining, bleeding, rectum feeling swollen/hurting, waking in the night to toilet, etc. So the NP suggested I take my Prednisone back up to 25mg and see if it helped. And then call to make an appointment with the MA.
  3. When I called to make an appointment to see IBD Specialist, I spoke with the RN instead of the MA (the RN is not as competent as the MA but she’s very sweet). The RN started to schedule me but stopped to talk to NP and IBD Specialist. When she got back to me, she said they want me to see the Colorectal Surgeon (CRS) at my next appointment. I asked to see the CRS at my last appointment but IBD Specialist said it was pointless to discuss my perianal fistula/incontinence/thrombosed hemorrhoids at this point, because the CRS wouldn’t do anything until I’m in remission. So then, the fact that IBD Specialist was referring me to the CRS now is NOT good… She believes that I am steroid refractory and 50/50 I am failing Stelara. IBD Specialist wants to prepare me for surgery (which for me would be a permanent ileostomy).

I really, truly thought the Stelara was going to work. And in fact, I do think it works. But I need to take it every 4 weeks instead of every 8 weeks (because that’s when it wore off and I have proven to metabolize these medications quicker than most people, as evidenced by my Humira serum levels never getting above a “2” even with weekly injections and no antibodies). And IBD Specialist has *all* her patients on an every-8-week injection schedule with Stelara. So I highly doubt she will do me the favor of letting me try every 4 weeks. And I get it–how much time would it really buy me? Surgery is imminent. I just don’t want to deal with it right now. I want to move into my new house and have another baby. I want to enjoy the holidays with my family–BG is at a magical age and I want to soak up every minute of her little-ness. I’m so tired of being sick and tired though, that I’m about ready to throw in the towel and just do what they tell me (instead of researching and fighting for more options). I’m not “ready” for an ostomy, but I am really, really tired.

XOXO,

MLACS