24 Weeks (With an Ileostomy)

As every IF and RPL lady knows, reaching 24 weeks pregnant is a milestone to celebrate because at this point your baby has a real chance at survival if you were to go into premature labor. Like your baby would a micro-preemie and would spend a solid 20+ weeks in the NICU–but at least they’d have a chance.

So I’m marking this occasion with my little LS. She is still kicking away in there! I have an anterior placenta (same as with BG) so I don’t feel her in the front very much, but often on my left side or the bottom of my pelvis. As I recall, BG was more chill than LS and I didn’t feel her moving as often. I do wonder if it’s because I drink 1 cup of coffee a day during this pregnancy and I only rarely had coffee with BG. But my heart tells me that LS is going to be more hyper and intense than BG, regardless of how much coffee I drink.

BG is such an easy and pleasant child, and I’m pretty sure the laws of the universe state that you don’t get two pleasant and easy kids in a row. I try to think on the bright side, that a kid who is challenging and pushes you out of your comfort zone can be awesome–that was me, always pushing my parents to see my point of view and get excited about new things (and being frustrated when they didn’t get it). I do hope I’m able to successfully cultivate two very different kids, if that is the case. My sister and I are very different and my own parents did not do a great job of meeting our individual needs and harmonizing us as a family despite our differences. I want to do better for my own kids.

BG is quite excited to meet LS and will put her face close to my belly and say “Hi baby! It’s your big sister! I love you!” And kiss my belly. Does it get any sweeter than that?! I think not. When looking at toys for Christmas, BG has already picked out some things she thinks LS should have, so I figure I’ll throw a few gifts for LS under the tree, even though it feels kind of silly…and a little scary… With all the loss I have experienced, I am naturally afraid of losing LS and I have the f*cked up but very common fear that if I start feeling and acting overly confident, the universe will take her to teach me a lesson. Logically I know that’s not how it works, but emotions are not logical.

I feel like I need to write an update about BG, but for now let me just put on the record that I love this kid with my heart and soul and I think she is an amazing little human and a gift to the world. She is such a loveable little kid, and I tell her every day that she’s a great kid and that I’m so lucky to be her mom ❤20181116_103728_Film1 XOXO,

MLACS

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Wow…second trimester already!

Hey guys, today makes 15 weeks! I had an OB visit today and her heartbeat was spot-on at 160-170 bpm. My belly has been expanding, but not like it did with BG–even though I weigh less now than I did with BG, my tummy is soft/squishy instead of hard. I presume this is because I have loose skin and, moreover, because I don’t have my colon (which was impacted due to taking Zofran with BG).

I loved my body/my belly with BG, but between my squishiness, scars from surgery, and my ostomy bag, I don’t feel very cute. I think part of my lack of enthusiasm for my “bump” is also that it’s my 2nd pregnancy and I have A LOT more on my plate–with BG, Mr. MLACS was gone 50% of the time, we lived in an apartment (now we are homeowners) and I didn’t have a toddler, plus it was a hard-won pregnancy, so I reveled in my ‘pregnant-ness’ and had lots of time and money to buy cute maternity clothes and take bump photos. I can’t be the only one–has anyone else found that their first pregnancy was all pinterest-y, but subsequent pregnancies were less so? I don’t want baby sister to feel less important or celebrated, because she is my little miracle and just because I’m not into *myself* right now is no reflection on how much I’m into her. I hope little sister understands and doesn’t take it personally. Because once she’s here, I’ll give her everything I’ve got just like I did for BG. Oh, and henceforth little sister will be referred to as LS.

So maybe you are wondering…how is pregnancy different with an ostomy? Well, first off, my ostomy bag covers the right half of my belly. As my belly grows and changes, I’ve had more challenges…

1. I eat more–a lot more–so my stoma and ostomy bags are getting a “workout” from all the food I consume.

2. My stoma is changing size. It has increased 2-3mm in diameter (so currently 28-29mm) and is protruding more.

3. Because my belly isn’t flat anymore, my stoma is changing size, and I am eating more, I’m having more leaks. In fact, I’ve gone from changing my appliance once every 4 days to changing it almost every day. And when I have leaks it irritates my peristomal skin.

4. I’m going to try different bases/bags to see if I can prevent leaks, and also because my preferred base only goes up to 35mm and may become too small.

5. My bag is much harder to hide under clothes. I had an easy time concealing it, even under skin tight clothing, prior to pregnancy/my belly growing. But now I can see my bag through almost anything I wear, tight or not. I’m frustrated about that. And between wanting to prevent leaks and also wanting to be comfortable, wearing compression garments is basically out of the question at this point.

6. I need to buy some new maternity clothes that suit my new body, but because I’m not into myself right now and I’m busy, I just haven’t made the effort. I really need to. I really wish I had a good friend here who I felt comfortable asking to go shopping with me.

So to be honest, having an ostomy has made pregnancy less enjoyable for me in some ways, as much as I hate to admit that. But I’m grateful to be healthy and moreover I’m grateful that LS is healthy, and that’s what really matters. The rest is trivial.

XOXO,

MLACS

 

Blunted. Muted. Faded. (Adrenal Fatigue after Prolonged Corticosteroid Use)

Terms which describe how I feel right now. I’m exhausted. I have alot of aches and pains in my muscles and joints. I’m cold all the time, and when I’m cold I can hardly move–it feels like a chore to get up from a chair and go to the next room. I’ve gained weight even though I’ve been eating healthier…

This is Adrenal Fatigue.

Post-surgery and a deadly fight with chronic illness. When does it get better and STAY better? Because I felt fabulous right after surgery…but then weaning off the Prednisone and pain medications revealed that my body is in rough shape and in no way back to “normal”.

It’s good that I’m off the Prednisone–my face has shrunk and I recognize myself in the mirror. My body now has a chance to recover from the damage the Pred did. But how f*cking long will it take to heal???

I’m tired of feeling like sh*t.

And I’m trying to help myself. Been eating more whole foods, way less sugar/processed foods, even though I crave sugar because *adrenal fatigue*.

I started going to the gym again, taking barre and power yoga and lifting weights. I only manage a couple days a week though, so I haven’t seen much results. I’m sore.

I started taking CW (charlotte’s web) brand CBD oil (cannabinoid oil) and it has helped me to feel somewhat better–it successfully weaned me off pain killers, as I was dependent on Hydrocodone (small amount, half of a 5-325 daily). And thank goodness because I have no way to obtain more pain meds at this time. Nor do I want to.

While I like feeling calm and not angry all the time (‘roid rage from presnisone), I miss having energy. I miss having intensity. I feel so lame now.

I read that it could take 12-18 months to recover from “moderate” adrenal fatigue. I really don’t have the patience to feel like crap for another year. I have an almost 3yr old to chase after. I have a house I still need to finish moving into and organize. I have a garage that is full of stuff that I need to declutter (sell/get rid of A LOT). I want to get in shape and look/feel amazing–I also have my 20th highschool reunion coming up in August. We might be moving again (Mr. MLACS is looking for a new position). And if I’m going to TTC, I have to do it soon because I’m 38yrs old already! Plus I want to do more with my life…

I don’t want to just feel ok, I want to feel *good* again. Soon.

XOXO,

MLACS

Resurrection

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“As the legend goes, when the Phoenix resurrects from the flames, she is even more beautiful than before”–Danielle LaPorte

In 2017…I lost my house to a fire, my health to Crohn’s disease (and subsequently my colon to a colectomy, my hair to Stelara, and my mind to Prednisone), and last–but certainly not least–I lost my husband to a SCA (sudden cardiac arrest).

Luckily, I got them all back.

My house has been repaired, my health recovered, and my husband resurrected.

And I lived through it all, with as much grace and courage and dignity as I could muster.

I have scars, both inside and out.

But I feel so proud of myself.

So at peace with myself.

Strong. Confident. Determined.

I have walked through the flames.

I will rise from these ashes.

More beautiful than before–not in vain–but rather, a beauty of essence. Of spirit. Of soul.

In 2018, I will emerge, radiant.

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

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