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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Try, Try, Try, Try it Again (learning curve as an ostomate)

In the words of Daniel Tiger, whom BG loves to quote, “Keep trying, and you’ll get better! Try try try!” She will sing this song to me at the most frustrating moments–like when I’m fumbling trying to work the tv remote to find the cartoon she wants. Bless her heart.

Well this weekend was an exercise in futility.

I had FIVE bag blowouts.

Like as in, my colostomy bag leaked/fell off and I had to clean up a literal pile of sh*t.

Five times.

I was doing SO well for the first 10 days post-op, until Friday, when I started to have sharp pains on the right side of my stoma. The pains would come and go, and I found they were worse when I had any sort of compression on the bag. So I tried to wear slightly less restrictive underwear (which I tuck the bag into–these are not ostomy-specific undies, just high-waisted Wacoal briefs I bought at Dillard’s last week). On Friday I saw my home health nurse but didn’t change my bag until after she left. Lo and behold, I found my skin was pulling away from my stoma on the right side where I was having the sharp pains. I was freaked out because:

  1. There was “output” (aka poop) in the crevice and I thought it could be infected.
  2. I had no idea how to address it–there are literally thousands of different products and appliances and I have a bathroom full of samples but needed to google what they are even for and how/when to apply them. So I’m all up-in-arms because I was woefully unprepared for this when I decided to change my bag. FML.

An ostomate wants to be prepared to change their bag. You want to have all your products that you might need within arms reach, otherwise if you have to jump up and search for things with your bag off and your stoma decides to “output” then you have a mess and it becomes a stressful situation.

I tore through my boxes of samples and found some seals–these things are supposed to help you get a good seal around your stoma and prevent leaks. My thought was that I could use the seal to cover up the open wound/crevice on my right side of my stoma, to keep it clean and hopefully make it stop hurting. So I nervously molded the seal and placed a new bag on, and it seemed to do the trick. The next day we got up and collectively took BG to her Little Gym class, where I mostly sat while Mr. MLACS participated with BG. Then we decided to go to a pumpkin patch about a 1.5 hours drive from where we live. We all got ready and I was pleased that I had managed to coordinate our outfits in a fall theme of blue jeans and shades of gray and navy blue–hoping to get a cute family picture. We get inthe car and 5 minutes down the road…

BOOM!

I feel my bag fall off and a warmth in my pants…

So we pulled over into an empty parking lot and I proceeded to clean up the mess. Poo everywhere. Luckily I came prepared–baby wipes, hand sanitizer, ostomy supplies (new bag, scissors, adhesive remover wipes, barrier wipes, gauze), fresh change of clothes and a ziploc bag to put my soiled clothes in.

It probably took me 20 minutes fumbling around in the drivers seat, but I got myself cleaned up and the bag changed. Then exhaled a long sigh of relief. It happens to everyone at some point, and at least I was prepared–I almost walked out of the house without that extra change of clothes and the ziploc bag, but my guardian angel must have been looking out for me.

We went to the pumpkin patch and had an absolutely wonderful time! There were pumpkins galore and lots of fun activities for kids. The air was crisp and the sound of childrens laughter echoed off every tree and hay bale and corn stalk under a clear blue sky. Perfection.

Then we got back to the car and I noticed my bag…was starting to come away from my skin…and I had no more bags and no more clothes, and a 1.5 hour drive home.

F*ck.

I had read that some ostomates would use medical tape or duct tape to hold their bags on in a pinch. And here in the South there is a Dollar General store like every few miles, even on the country roads. So I held my bag on until we reached a DG store and send Mr. MLACS inside to fetch ALL the tape. And chocolate. Because post-op my body craves a lot of chocolate, especially in emergencies.

I quickly duct taped the perimeter of my bag and said a silent prayer that it would hold another 45 minutes until we arrived home, and stuffed my face with a couple Ghiardhelli chocolate squares as I squeeled the tires out of the parking lot.

Just before we reached the house, I felt the bag coming unglued and reached my hand under my seatbelt to try to hold it on a couple more minutes until we reached the house. Then I hobbled inside the house, shouting for Mr. MLACS to bring me a trash bag and a pack of wipes. It was another ridiculous mess. By the time I was done cleaning it up I was thoroughly exhausted and my nerves were shot. My peri-stomal skin was also thoroughly irritated from all the bag changing. Someone brought us dinner, which was absolutely delicious, and we started to watch a Harry Potter movie (in honor of Halloween) and I think I fell asleep on the couch about 5 minutes in.

Then I woke up at 4am, with ANOTHER f*ing bag leak.

F*CK. F*CK. F*CK.

It wasn’t too bad but I had used a different bag/flange and the adhesive made my already irritated skin red and raw, so I had to try to address that. I googled and decided to dry it with a hair dryer and put some stoma powder on it. The first bag wouldn’t stick at all, so I had to cut another one. But finally, I got a bag on.

I was exhausted and laid around all morning, but since Mr. MLACS cannot drive for 6 months since he had his defibrillator/pacemaker placed, I amthe designated “errand runner”. And we needed some stuff from walmart–namely a warm undershirt and tights for BG to wear under her minnie mouse halloween costume at soccer practice that afternoon. So I rallied and schlepped myself to walmart. Got BG’s stuff and a few groceries. Tossed in a bag of peanut butter M&M’s for myself. Got back to the car and…

BOOM!

Bag leak #4 was in effect.

This time, I didn’t freak out. I sat quietly in the drivers seat and ate my peanut butter M&M’s.

Got home and it was chaos because we needed to get ready to leave for BG’s soccer practice. Mr. MLACS got BG ready while I addressed my bag–this leak wasn’t too messy so it didn’t take me long to clean myself up. We went to practice and I took lots of pictures while Mr. MLACS participated with BG–I love soccer so I usually do it with her but not that day, and to be fair 12 days post-op is a bit soon even on a good day. Then we came home and again someone brought us dinner (so lovely being everyone’s favorite charity case as of recently–I certainly won’t refuse a home cooked meal). And again I collapsed on the couch, exhausted and frustrated.

Woke up on Monday morning to…

Bag leak #5!

This was a couple hours prior to embarking on a 1.5 hour drive to see my Colorectal Surgeon and Ostomy Nurse. My skin was still raw and I knew they would have me remove the bag again, so I didn’t try anything fancy, just slapped on a one-piece drainable bag.

We got to the surgeon’s office and my blood pressure–which has been low since surgery–was like 140/80. Clearly, I was stressed out. I asked the surgeon’s nurse if he would “fix it” (meaning sew the skin back to my stoma on the right side) and I was surprised when she said “No, probably not”. Like…what? So he would just leave me with this hole that is causing me leaks and potential infection? WTF?

The Ostomy Nurse came in and explained that the body will “heal its self” and she has seen the skin pull away from the entire stoma and nothing done to repair it. Apparently, this is not uncommon and is actually expected in someone like me because my skin is thinned and my ability to heal weakened from the long-term  high-dose Prednisone I’ve been taking since January. I was disappointed because I wanted my stome *fixed*.

Instead the Ostomy Nurse took a look at my peristomal skin and decided to use an anti-fungal powder in the red areas. Then she chose to fill in the crevice between my skin and stoma with a bit of stoma powder, followed by “caulking” around my stoma with paste, prior to applying a new type of bag–the Coloplast sensura mio flex two-piece drainable bag/base. She used Hollister Adapt stoma powder and paste, and Cavillon 3M barrier/adhesive spray.

I spoke to my surgeon and told him things had gone well up until these bag blowouts, which really makes me wonder if I’m cut out to be an ostomate or if I ought to consider the j-pouch. It is stressful to have peri-stomal skin issues and to live in fear of bag blowouts, on top of the other adjustments of life with a bag. The surgeon said it will get easier. I hope he’s right.

So far, I’ve gone 24 hours without a bag blowout since the Ostomy Nurse fixed me up yesterday.

I’m hoping to have a somewhat relaxing day at home with BG and Mr. MLACS, doing a bit of cleaning and I want to bake a banana cake with cream cheese frosting. Then we’ll trick-or-treat this evening.

And Mr. MLACS returns to work tomorrow. I’m not ready for him to go back, mostly because I just like having him around and also because I’m scared of him going back to work and being stressed out and something happening again–he collapsed at work, if you recall. He was working 12+ hour days and he wouldn’t tell them “No”. He has said he will advocate for himself and insist on shorter hours and will not stray from doctors orders. I’m still freaked out.

But you know you gotta “Keep trying and you’ll get beeeetterrrr! Try! Try! Try!”

XOXO,

MLACS

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

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

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