More Drugs or Less Colon?

How many more drug therapies do I want to try? When will I feel “ready” for surgery (to remove my diseased colon)? Which surgery option is best for me (permanent illeostomy, j-pouch, k-pouch)?

These are the questions I have been agonizing over since I received results from my colonoscopy on May 2nd and blood tests from these past couple weeks. I have been anxious to learn what the IBD Specialist would recommend at my follow-up appointment this past Monday May 22nd. I was afraid she would only offer options I didn’t like and then bully me to pick one.

I went to the city for the appointment and left Mr. MLACS and BG back home, which was actually good because I needed the 4 hour round trip drive time to myself.

I was trying to act casual when I saw the MA, like “Hey girl” but my blood pressure gave me away–148/80. It was higher to begin with, like 150/90. I groaned and leveled with her that I had been stressing about the appointment. Filled her in on my progress post-colonoscopy: first few days thought I might die, added Cortifoam enemas and they helped, now I feel as good or better than I did pre-colonoscopy *but* it’s moot because I’m still on 40mg prednisone since I got sick when I tried to drop to 35mg. So basically, nothing has really changed.

Then I sat in the small, stark, window-less room by myself for 20+ minutes freaking out until IBD Specialist knocked and entered.

She wasted no time. Asked me questions. Discussed my test results. Then launched into a flow chart of treatment options, during which I was laser-focused, taking it all in and formulating questions to ask at the conclusion of her presentation. Must say, I love well organized notes and flow charts, so I appreciated her giving me the visual.

My test results:

  1. Colonoscopy showed severe left-sided colitis. However, there was no inflammation outside the colon (good) and all biopsies came back clean. I tested negative for CMV.
  2. I tested NORMAL for TPMT, which means I CAN metabolize 6MP and Imuran, so these ARE treatment options for me! Yayyyyyy!
  3. My Humira serum levels were pitifully low (2) and IBD Specialist said this indicates that the Humira isn’t doing anything for me. However, I tested negative for antibodies (to Humira) so it remains an option, albeit a weak one. Boooooo.

So with this in-mind, IBD Specialist presented me with treatment options:

1. Humira + Imuran

I went into this knowing my first choice would be to add Imuran to my Humira. I know the Humira HAS helped me (even if it doesn’t seem like it clinically)  and I’m used to it–no negative side effects–so I don’t want to gamble on a different biologic. Since my Humira levels were low I asked about increasing my dose from 40mg/week to the max dose of 80mg/week, but IBD Specialist said 80mg has not shown to be any more effective than 40mg so she doesn’t prescribe the 80mg dose. Frustrating, but ok. Moving on. She said I can try adding the Imuran in hopes it will “boost” the Humira and make it more effective. I was SO relieved she gave me this option.

2. Remicade + Imuran

Even though I tried and “failed” Remicade, IBD Specialist suggested I try it again and heavily medicate (benadryl, tylenol, etc.) in hopes of avoiding a reaction. Like, apparently I should try it even if I do have antibodies. But after further discussion about my experience with Remicade, she decided it’s not an option after all. I was not at all interested in trying it again.

3. Stelara + Imuran

Stelara is a newer drug that has had great results for a lot of people–I’ve been reading peoples’ experiences on forums and it looks promising. It may take only a few weeks to reach “theraputic levels” or it may take months. It’s my second choice after Humira. I hesitate to switch though because I fear getting very ill again if I quit Humira, potential side effects of Stelara, and I want to have a baby and Stelara is a newer drug so there’s nothing to say of it’s safe for pregnancy or breastfeeding. But glad it’s an option.

4. Entyvio + Imuran

Entyvio is also a newer biologic and plenty of people who “failed” Remicade and/or Humira have found success with Entyvio. But it is slow to work–definitely slower than Stelara. So it would be my 3rd choice… except…

I’m really leaning more towards surgery.

5. Diverting Illeostomy (I think it is called?) Where they would disconnect my colon and give me an ostomy (poop in a bag), which could allow my colon to rest and heal. I crossed this off immediately, saying that if I am to have surgery then it will be THE surgery to remove the diseased colon.

IBD Specialist perked up and said surgery is a great option for me. However, as a “Crohn’s Colitis” patient I am not elligible for the J-pouch. Which I already knew. But I need a 2nd opinion before I will accept her diagnosis, and rule out the J-pouch as an option. I intend to seek a second opinion from the Cleveland Clinic. I have not shared this with IBD Specialist, because she acted indignant that I questioned her diagnosis in the first place. So that leaves the permanent illeostomy or a “continent ostomy” in the form of a K-pouch (I’m not considering BCIR). The illeostomy would *theoretically* be the simplest surgery (with no pouch to fashion) and much less chance of complications now or down the road. IBD Specialist said that since I have never shown inflammation outside the colon there’s maybe only a 2% chance of disease reappearing after surgery, so I could expect to live *MED FREE* as in no more pills, injections, infusions, enemas, steroids, etc. Buh bye medicine cabinet! Which is what I want–no more disease, no more meds, living life to the fullest. But then you have to deal with caring for an ostomy and learning to live with the bag. How will I wear clothes–what will be comfortable? What about when the bag leaks (everyone does sometimes)? What about the audible noises a stoma makes as it empties into the bag–will I avoid eating to avoid embarrassing noises in public? What if my skin is super inflamed by the adhesives used to attach/seal the bag to me–I do have reactions to adhesives (like from bandaids and the sticky pads they use for an EKG, etc.) so this is a serious concern for me. If I wanted or needed to remove my entire rectum it would require a 2nd surgery (I thought it could all be removed at once but apparently the rectum removal is complex). The resulting wound from rectum removal may take for-ev-er to close and many people are ‘oozing’ for a year post-op. So, it could be cut-and-dry or it could be more involved.

The K-pouch removes the entire colon and creates a resevoir pouch akin to the J-pouch, which holds waste and gives you some time in between needing to empty it. You have a “valve” on the outside and when you need to empty your pouch you use a catheter, insert it into the valve and it drains your pouch. You can wear your regular clothes without concern for concealing a bag underneath. You decide when to empty your pouch–no spontaneous noises drawing attention in the middle of a quiet room. No worries about a bag leaking, or changing your bag, or skin irritation from adhesives/leaks/etc. But since it is more complex it is also more prone to complications, and since K-pouches are relatively rare (only a short list of surgeons even know how to perform the surgery) you may well have issues finding someone local to treat you in the event that something goes wrong. Is it worth trying?

The J-pouch is most peoples’ preference because it removes the entire colon, fashions a resevoir pouch (J-pouch) out of your small intestines and then reconnects the pouch to the anus so that waste exits the “normal” way, albeit one can expect to need to empty their pouch at least several times a day so it’s still not ideal. The J-pouch generally requires at least 2 surgeries, though rarely will be performed all in one surgery–but that is not best practice. Many people require 3 surgeries, and that would be me. First they’d remove my diseased colon and give me a temporary illeostomy for several months. Then the second surgery they would create the J-pouch. Then several months later the final surgery would close the illeostomy and connect everything together. Three surgeries is a lot. Then there’s the chance that there would be lingering disease in my anus and it would either require me to take meds like I do now or have a 4th surgery to remove the J-pouch and go back to an illeostomy (or possibly convert to a K-pouch). Then there is “pouchitis” which some people (a lot) end up having “chronic pouchitis” and this requires them to be on antibiotics and who the hell knows what else to deal with it–not f*cking cool. I worry that I would be one of the “lucky ones” to have endless issues with the J-pouch, and what I really want (after 13 years of this disease) is to have surgery and be DONE with it.

Thinking about all this stuff is enough to make my f*cking head explode. On one hand, I’d rather have control over when to have surgery and where (such as traveling to Cleveland Clinic) and if I wait until I’m so ill that surgery is my only option then I may end up with a mediocre surgeon and far more complications. But on the other hand, I’m scared. I don’t want to regret whichever surgery option I choose (and FTR surgery is inevitable, just a matter of when). I have discussed it with Mr. MLACS but he’s not got much of an opinion except that he supports me having whatever surgery I choose. I wish my Mom was alive. Not because she would tell me what to do, or hold my hand, but because she would make me feel brave and go forward with whatever surgery without fear or regret. And I could count on her to help me and take care of BG afterwards. I can’t dwell on the way I wish things were, but I wish she was here.

So then, what is my plan?

  1. Humira + Imuran…except I tried the Imuran this week and it made me feel AWFUL. So now I’m going to try 6MP. If I can’t tolerate it at all then I will be so f*cked. Pray for me.
  2. Stelara + 6MP…or if I can’t handle 6MP then Stelara alone…maybe…or…
  3. Surgery

My goal is still to get into remission and off prednisone with drug therapy, and then try to have another baby. Or maybe even to try to have a baby with an illeostomy–but I don’t think I’d try it with a K-pouch or J-pouch simply because they would take awhile to heal and I’m about to be 38 years old, etc.

This…this is what I am working with right now. I actually left my appointment on Monday feeling sad, but relieved. The drugs might work, but if they don’t then surgery could be a great option–provided I don’t end up with complications. I mean, even with complications most people say they would do it again, so…

XOXO,

MLACS

 

 

Chronically Cray-Cray

I feel like I am losing my mind.

It’s the drugs. I have been doing better this past week–less blood, more stool, less urgency, less cramps (didn’t even take any Bentyl). So I decided I needed to try dropping my Prednisone from 40ng to 35mg yesterday.

Big mistake. HUGE.

I took my 35mg of Prednisone circa 3am Monday morning and went back to sleep, then woke up feeling tired (like chronically ill fatigued not ordinary tired), anxious and disoriented. It’s hard to explain but maybe a good analogy is I felt like an autistic kid with SPD in the middle of chucky cheese. I was freaked the f*ck out.

So what this tells me is, I was in withdrawal from that tiny 5mg Prednisone drop–this is typical. And it’s awful. But it has to be done.

I warned Mr. MLACS that I was “short on spoons” (click HERE to read about the ‘spoon theory’) and basically in survival mode. My goals were simply to:

  1. Take BG to her *very first* dentist appointment at 10am
  2. Not yell at BG for doing obnoxious toddler things that spike my anxiety and wear me out

I also wanted to sweep the incredibly dirty floors (have not even begun to catch up since my hospital stay 3-ish weeks ago) and do some laundry…maybe fold it (ha! who am I kidding? It lives in a heap on top of the dryer) and make something for dinner. Mr. MLACS told me to take it easy and just do what I can. Love that guy.

So I tried to get BG to watch cartoons or play independently while I tried to calm myself down and get my bearings. But she is a toddler and doesn’t understand when mommy needs space and quiet. I snapped at her quite a bit. I just needed to be left the f*ck alone. I just needed to stop sweating and feeling waves of panic wash over me. I just needed to escape. But there was no escape.

And BG wanted my attention. So I did my best. I talked to her about going to the dentist. I think we may have read some books or played something. And in between interacting with her I would ask her to be patient and “give me a minute”. But what I really meant was give me 10 minutes and toddlers don’t have that kind of patience so BG would start jumping on the couch or spilling water everywhere and I would start to lose my sh*t. This was our morning.

Then we had BG’s dentist appointment at 10am. It was hell trying to get us both ready, as I was physically dragging and when I have anxiety I am basically stuck to the couch, too overwhelmed to self actualize. If BG hadn’t been so goddamned annoying I probably wouldn’t have been able to pry myself off the couch, so we have her to thank for any and all productivity yesterday.

BG did very well at the dentist! So did I. To my relief we were the only ones there and the office was cool and quiet, which helped me to stay calm. There was a train running on a track along the perimeter of the room near the ceiling. BG is super into trains so she says “Alllllll abooooooard! Choo choo!” when she sees it. But when it exited to the next room and was out of sight she would whine and moan–that was like nails on a chalkboard. I very dryly told her the train will be back but she wouldn’t quit whining until it entered the room. Uhg. And I was trying to fill out her paperwork so her distracting me–when I’m anxious and have “brain fog”–makes this much harder than it would normally be. But I mean, what is “normal” for me anymore? I don’t even f*cking know.

Anyways.

So the dentist was a very gentle and soft spoken man. He had me hold BG facing me and then lean her back so her head was on his knees and he quickly and gently examined her mouth. Says her teeth look great but she has some plaque and we need to brush thoroughly along her gum line. I’m embarrassed to say that we let BG brush her own teeth and I had a feeling this was insufficient but she is happy to do it and I didn’t want to hold her down to get the job done. But I suppose we’ll have to because I also don’t want her to have a mouth full of cavities at 5 years old like I did.

BG did cry during her exam but the lovely dental assistant handed her a bag of “goodies” when she sat up and that calmed her right down. I was so proud of her because she said “thank you” to everyone and told everyone goodbye as we were leaving. I was drained but offered to take BG to the park. Instead of running and climbing she mostly played pretend–handing me handfuls of mulch to “eat”–and picked up rocks. She’s super into rocks. I’ve had to start limiting the amount of rocks she can take and keep. There were other moms with kids and I spoke to them but certainly wasn’t in the frame of mind to make friends. One of those instances where being a “chronic mom” is isolating. Luckily BG was disinterested in the kids and we stuck to ourselves, “eating” mulch and hoarding rocks under the playground equipment like a couple of trolls. It was just what I needed.

I fed BG snack at the park and we set off for home to make lunch and take a nap. I actually pulled together a good lunch for us and I felt good about accomplishing the dentist, park, and lunch. Then we cuddled up and took a 2 hour nap together. I felt a bit better when we woke up but still fatigued. I put on cartoons and decided to sweep up the floors. You should have seen the massive ball of pet hair that materialized. I’m disgusted. And I just cannot keep up with the house cleaning and neither can Mr. MLACS. I *refuse* to let our dream house get filthy like this once we move in (in August if it goes according to plan). So we will have to budget for a house cleaner to come at least bi-weekly. I feel so bad about that but I just can’t do it myself, at least not consistently–I don’t have enough spoons and I want to use my spoons for other things, like cooking and taking BG to the park.

I asked Mr. MLACS to pick up some things from the grocery store on his way home and threw dinner together–marinaded some chicken breasts in olive oil/lemon juice/lemon zest/salt/pepper and had Mr. MLACS grill them, then we assembled salads. BG does not eat salad. Also the dentist confirmed she is cutting her 2 year molars–that sh*t hurts. So I let her eat an entire container of cut up strawberries for dinner. And a popsicle.

By this time I had calmed down (it only took ALL day). Mr. MLACS was great and totally took BG off my hands so I could chill, and it really helped.

I was exhausted when we went to bed but couldn’t get to sleep until almost 1am. Then was awake from 5am to 6am to toilet and wait for my Prednisone to kick in. I tried 35mg again today but in addition to feeling like sh*t and mentally unstable, I began to have increase in pain and blood. So I gave up and popped that 5mg of Prednisone around 8am. And it helped. But this is bad bad bad that I cannot even drop 5mg at this high of a dose. My GI is probably going to say the Humira isn’t working and tell me to try a different biologic. And I don’t wanna.

XOXO,

MLACS

 

 

A New Diagnosis

Just going to get to the point: I saw the IBD Specialist on Monday and she said that I have *Crohn’s Disease* not *Ulcerative Colitis* due to my fistula. That was not what I wanted to hear. Crohn’s is worse than UC. Crohn’s cannot be eradicated by surgery. Crohn’s is *forever*.

Luckily IBD Specialist had an opening for a colonoscopy at 11am the next day so I took it. I had to do a bowel prep and they gave me Golytely. It was THE worst bowel prep ever–an entire f*ing gallon of foul tasting liquid. Even mixing it with apple juice couldn’t make it civilized. I had stomach cramps, bloating, and severe dehydration. So for future reference–do NOT take Golytely–insist on something (anything) else.

I felt so bad (weak, muscle cramps, sore hemorrhoids and rectum, no sleep) by the time I was done with the prep that I had Mr. MLACS grab me a wheelchair to get from the parking garage to the office. Of course BG was with us too, and Mr. MLACS had planned to take her to the childrens museum while I had my procedure. Unfortunately, it was required that Mr. MLACS remain in the facility during the procedure so he and BG just ran the halls. God bless Mr. MLACS–he has had a tough couple of days worrying about me and keeping up with BG.

What the colonoscopy revealed:

  1. I have severe left-sided colitis. The photos look like chopped liver.
  2. The rest of my GI tract is pristine
  3. Official diagnosis: Crohn’s Colitis *or* Crohn’s Granulomatous Colitis

So IBD Specialist wants me to restart my Rowasa (mesalamine) enemas, and if I find I cannot retain them then she will switch me to cortifoam.

IBD Specialist is confident that she can get me into remission with drug therapy and did not even hint at surgery, so there was no discussion of surgery and no meeting with a colorectal surgeon.

I liked the IBD Specialist and her team, and I am relieved to finally be able to relax because I have a highly motivated and highly competent medical team. I only wish that I could keep them, but unfortunately they are the “House” (if you are familiar with that tv show) of IBD and they only take on problem cases and then once they fix you they send you back to your regular GI.

XOXO,

MLACS

Waiting In The ER: Real Stories

I’ve been waiting to be seen for 4.5 hours, alone because I refuse to subject my family to the germs and all the crazy ass people.

Story #1

I find it odd that entire extended families parade into the ER when only one of them is ill and not even *that* ill because they are sitting there talking to all the aunts/uncles/cousins. Some of them even brought pillows and blankets. I do not understand this “borg” mentality, clearly, as I chose to be alone. Even if Mr. MLACS was here we’d just be looking at our phones because we are not the “loud family reunion in the ER” types.

Story #2

I find it odd and inappropriate that people bring kids to the ER when they don’t need to be there. I saw 5 little girls skipping down the hall in front of 4 adults–surely *one* of the adults coukd have kept the girls? ERs are not places for kids. Also, I saw a birthday party of pre-teen girls–like 8 of them–carrying gifts for someone. And then there are a bunch of teenagers…

Story #3

Speaking of teenagers, there was a band leader and a baton twirler girl dressed in their band uniforms, sequins and all! There are also several members of a track team. And some honky-tonk trouble makers who think it’s funny their friend hurt his hand.

Story #4

There was a mama here with her husband, toddler, and infant. She was here before me. And I felt so bad for her and her family having to wait. They were clearly stressed out and uncomfortable. Finally I heard the baby crying and saw the mama’s head in her hands and went and quietly asked if she needed anything, because my husband and daughter were close by and could drop something off. Poor thing was toast and said no thank you and they left shortly after. I wish she had been seen. I would have given her my spot if that was an option.

Story #5

So Mr. MLACS is parked in the parking with BG, who is watching cartoons in her carseat with a very full belly and fighting sleep. He tells me there are a bunch of people drinking in the ER parking lot. Seriously?! I’m not surprised but it’s so lame.

Story #6

There are some suuuuuper sick looking older people scattered around the waiting room slumped over in wheelchairs. They look like they are ready to die. Kind of creepy.

Then there’s me. Lookin all Johnny Cash “man in black” in head to toe black sweats and a ball cap. Glad I wore the ball cap because it is easier to avoid eye contact with weirdos. I was feeling like crap and then I spiked a 100° fever and I needed to have blood drawn anyways, so decided to hop on over to the ER round dinner time, thinking it wont be crowded because its early. And it wasnt too crowded. But my rookie ass forgot that they take people based on priority. So even though I was here early, at least 6 ambulances have pulled up with messy traumas and then there’s all the people who look like they are dying. And the junkies faking chest pains to jump the line. I am SO screwed. But I already had blood drawn and I do NOT want to have to go to labcorp tomorrow and spend 2 hours waiting there after I “did my time” here. And Mr. MLACS keeps telling me to stay.

But it sucks. I’m sore and achey. I havent eaten sh*t in the last couple days and I brought apple juice but I’ve run out. I am having colon “attacks” and the pain is real and I sit here squirming around, clenching my butt and my jaw, lest they call me while I run to the toilet. I did go twice though and told the front desk my name just in case. Not that they paid any attention. I hate “exploding” in shared public restrooms but I had no choice. I hate that BG and Mr. MLACS are in the parking lot with a bunch of low-lifes. I worry that we’ll be hit by a drunk driver on our way home and it will be all my fault for this useless trip to the ER. But I am grateful to be better off than some of these poor sick folks.

XOXO,

MLACS

 

Decisions Decisions…

Saw the local colorectal surgeon on Tuesday (the one I saw about my hemorrhoids back in February) and saw current GI on Wednesday. Both appointments went better than expected.

Colorectal surgeon asked me questions, including “Are you sure you have a fistula?” and “Are you sure you have Ulcerative Colitis and not Crohn’s?” The answer to both questions is emphatically–YES–but with hesitation about the UC vs. Crohn’s diagnosis because I need a colonoscopy and biopsies to confirm a diagnosis. So far all tests (and my 13 year disease history) point to UC. But people with UC only rarely develop fistulas–that’s a characteristic of Crohn’s–so I see why all my docs are skeptical.

The Surgeon had me drop my pants and lay face down on her table. She commenced poking and prodding and the *highlight* was when she performed a “digital rectal examination” (finger in the butt).

But the good news is my fistula is superficial (only in the skin) and Surgeon only needs to “lance it and lay it open” (fistulotomy) and it will heal. This is great news, because many fistulas require more complex surgery, sometimes multiple surgeries, and can take months or even years to heal. I got super lucky to have an uncomplicated fistula, and I’m grateful to have caught a break on this one. I’m scheduled to have the procedure under anesthesia on May 10th. I could have it done outpatient but that’s not how I roll–prefer to be KO’d and blissfully unaware for procedures.

Saw current GI on Wednesday. To my surprise he actually suggested that I have a second opinion and told me he’s like to refer me to an IBD specialist in his city. I thanked him and said I’d be happy to follow his recommendation. I then asked if he’d mind if I saw my old GI in the midwest while I’m back home in May, and current GI was all for it! What a relief!!! I thought I would have to be the one to bring up getting a second opinion and I was dreading it.

I was so flabberghasted by the way the conversation went that I neglected to press current GI about my medication options to help me wean off the prednisone. But I honestly don’t think he wants to discuss it until after I get a second opinion. So for now I’m stuck at 25mg prednisone. Hating it (prednisone) because I have “moonface” and look chubby even though I’ve lost weight. Had hoped to be back to my old self soon. I really have to let go of my expectations.

Current GI examined me and again (2 days in a row) I received a “digital rectal examination”. He was going to stick a scope in my anus but I requested he not do that and he obliged.

So I need a colonoscopy and current GI said he *can* do it but indicated that one of the second opinion docs would be a better choice. I was surprised he said that. Initially I thought to have the procedure done by my midwestern GI when I see him during my trip home. But talked to his nurse and he is booked that week. Which is actually better because I’ll need someone to take me/pick me up and look after BG because I’ll have to be under anesthesia.

I decided to see if the local Surgeon can “supersize” my order and add a colonoscopy onto my fistulotomy, since I’ll already be under anesthesia and this way Mr. MLACS would only have to take one day off work. I called today and spoke with Surgeon’s nurse, who informed me that Surgeon prefers not to combine the procedures, but she will ask Surgeon and get back to me. Fingers crossed that Surgeon agrees to do both procedures on May 10th.

As for me, my symptoms are still the same, haven’t worsened or improved. Urgency, tenesmus, toilet bowl red with blood, passing very little stool, 5-6x per day. I’m fatigued but still managing quite well. However, I think I need to be checked for anemia. Been bruising easily and today felt winded walking through CVS. I really do not feel like messaging current GI to ask for lab orders and kick myself for not requesting them yesterday, although to my credit, I did inform the MA of my concerns when she was taking vitals and information–so GI ought to have mentioned it.

I started exercising again–tried my first pilates class using the reformers and LOVED it! It’s the perfect activity for me right now and I thought it was fun! The teacher is lovely and I did so well that she asked if I should consider becoming certified to teach. This made me feel good and also has inspired me to find my way back to the fitness industry. I love helping people reach their fitness goals (coaching) and I want to do something outside the home. I’m not prepared to seek certification or teach just yet, but I will start looking into it and find an opportunity when the time is right. Oh! I bet most of you don’t know that I was a fitness competitor and personal trainer for years. Love it but my UC started flaring in 2011 and I never fully recovered–it’s been a rocky few years–and sometimes I don’t see the inside of a gym for weeks or months. So I just do what I can, when I can. And I hardly feel qualified to motivate other people when I’m not in shape. Hopefully that will change soon via meds or surgery, because I miss my super active lifestyle. I’m a “jock” at heart.

We dyed Easter eggs with BG tonight and she was a riot! Threw the biggest fit until we were done coloring the eggs and then greedily shoved them in her Easter basket and clutched them to her chest. Then commenced playing with them–Mr. MLACS was a gorgeous blue “daddy” egg, BG was a radiant pink “baby” egg, and me… I was a cracked yellow “mommy” egg. Mr. MLACS teased me because his “daddy” egg was shining bright like a diamond and my “mommy” egg was plain and beat up. None of these eggs will last until Easter but c’est la vie–just hope BG doesn’t hide them where we can’t find them!

For Easter I bought BG a bunch of trinkets, like a slinky, silly putty, bubbles, stickers, etc. But no candy because refined sugar turns her from a mogwai into a gremlin–seriously, she loses her mind. Plus her idea of a treat is organic fruit snacks and chocolate graham crackers, so why ruin a good thing by showering her with candy?!

Hope you all have a lovely Easter weekend. We will be spending it just the three of us ❤

XOXO,

MLACS

 

Nope.

So, I *thought* I was headed for remission. I *thought* I would be good-as-new in a couple months and ready to run a marathon (not that I run, but I would like to know that I could if I wanted to) and all cleared to get pregnant again–I am so longing for another baby.

But no.

Last Monday I dropped my Prednisone from 25mg to 20mg and tried it for 2 days. My symptoms increased so I was like “Oh hell no!” and increased my Prednisone to 25mg again.

But the damage was done. I opened “pandora’s box” when I dropped my Prednisone and my *beast* of an immune system woke up.

And it keeps getting worse, not better. My frequency has increased from 2-3 toilet sessions to 5-6 sessions. I have cramps and tenderness in my lower abdomen. I have to *run* to the toilet, as my urgency is back (thank goodness for depends). I have tenesmus (feeling like you have to poop but nothing comes out) and the straining is inflaming my hemorrhoids. And I’m not passing much if any stool, just bright red blood–so back to a liquid diet I go.

I talked to my awesome GI nurse in the midwest last week, and I have planned a trip to go visit family and friends and also see my old GI and a colorectal surgeon while I’m there. If I have the surgery to remove my diseased colon (more like *when*, but whatever) I want to do it at my old GI’s hospital because they are nationally ranked as a good hospital for colorectal surgery and I would be close to my support system.

I can’t believe I’m seriously to the point of considering surgery. It feels surreal.

For those who don’t know, my surgery would entail removing my colon in one surgery and fashioning a stoma (a hole in my abdomen where my intestine protrudes) and then I would be pooping in a bag for several months while I heal. Then I would have a second surgery to reattach my intestines to my anus, allowing me to poop out of my butt “normally”. But, it really wouldn’t be normal because without my colon food will pass quickly and I would have to go to the toilet as often or more often than I do now. Which is not desireable. But best-case scenario I would be “disease free” once my colon is removed and no longer need to take medications or worry about getting sick.

Worst case scenario is I might have constant infections or lingering disease in my anus that requires medications. I could also end up with a permanent ostomy bag (poop bag that I wear 24/7 for the rest of my life) if the reattachment surgery fails.

Even though I don’t want to deal with surgery, or a second surgery, or an ostomy bag, or pooping frequently as a ‘new normal’, or the potential complications…

I would still choose surgery over loading myself with drugs and feeling like sh*t for the forseeable future. I would rather live life on-the-go with an ostomy bag than live life on-the-couch with my diseased colon.

But there are lots of other things to worry about besides where and when to have surgery. Like how will Mr. MLACS take off of work to deal with this? Who will help us with BG? What can I expect during recovery–how long before I can lift my 34.5 lb kid into her carseat to go to the store/park/etc.? What will this do to us financially? And how will I come to terms with the fact that we are not having another baby (when that was the cornerstone of my ‘5 year plan’)?

I see a colrectal surgeon tomorrow (here in the South) regarding my fistula. And I see my current GI on Wednesday. Maybe current GI will give me some medication options, but I’m not sure he can or will do what needs to be done to get me well.

Mr. MLACS is pissed that I’m sick again and he was a complete dick about it last night. I really wish he could support me the way I supported him through his medical crisis–I was positive and very “it’s us against the world” and I did a lot of reasearch about what was going on with him. He has a sour attitude and can’t hide his frustration and anger, which makes me feel anxious and guilty on top of all the other sh*t I have to think about and deal with. It’s ok for him to have these feelings but it’s not ok for him to stew in them instead of dealing with them. And then blow up and heap his issues onto my already full plate–which he did last night. I was so exhausted and just… numb… I didn’t even cry. I’m just really disappointed in him and I doubt his ability to deal with whatever comes next. He just texted me that he can take off work to watch BG and take me to my appointment in the city on Wednesday. But if he’s going to use it ammunition to browbeat me during an argument (which he did last night) then I’d rather he just go to work so there’s one less thing for him to complain about. I don’t need his drama right now.

XOXO,

MLACS

White Knuckles

It’s been an interesting few days…

I got worse over the weekend. The more I declined, the more meds I was taking to try to make it bearable. I went from taking 1/2 Hydrocodone to whole Hydrocodones. Popping Bentyl like tic-tacs. And counting the minutes until I could take my next dose of Prednisone.

I felt like a zombie, and despite my efforts I was still in a lot of pain. Waking up every hour at night, rushing to the toilet until I could take my first dose of Prednisone–I started taking it earlier and earlier, like at 2am. After taking it I could sleep for more than an hour, but I’d wake up soaked with sweat, and scrambling to make it to the toilet, trying not to wake anyone else in the house. I started having more intense cramps and my hemorrhoids became very inflamed, and it was hard not to cry out.

Mr. MLACS had to go into work both days this weekend, and both days I had to ask him to come home by lunchtime because I was feeling awful and nodding off. He took BG to the park and did everything else too, while I lay on the couch in between trips to the toilet, sipping my apple juice and pedialyte and taking drugs like I was Lindsay Lohan.

Does it sound glamorous? It’s not.

Sunday was insane.

I had not had a bowel movement in at least 3 weeks. I also had not eaten more than a few bites of solid food. But all of a sudden, my cramps became unbearable and I spent the day sh*tting my brains out. So crazy because the blood just *stopped* when the poo started. Every time I ran to the toilet my heart raced and I felt on the verge of a panic attack. Then when it was over, I would collapse on the couch.

I started having a hard time making it to the toilet–incontinence–and began wearing depends (adult diapers). They’re actually quite comfortable, though I feel embarrassed about it.

Monday came and I’m so grateful that Mr. MLACS stayed home from work so he could take me to see the new GI and care for BG. He’s doing everything. Groceries, pharmacy, meals, bath time, play time, Little Gym, getting me whatever I need–he’s been strong and gentle.

So Mr. MLACS and BG dropped me off at my appointment and went to go buy pet food–BG is in size 3T now so I also asked Mr. MLACS to go to Carter’s and buy some play clothes.

The New GI is relatively young, maybe 40 years old, and not bad looking if you’re into “frat boys”. I came armed with my meticulous medical records, organized from 2004-present. He was impressed and mentioned that he knows some of the more noteable GI’s I’ve seen, like called them by first name “Oh yeah, I saw Matt last weekend at a conference!” And I’m like, “Who is Matt?” because I don’t call doctors by their first names.

Then we got down to it. He was not amused that I had raised my own dose of Prednisone to 60mg (because I was honest) and first off said I’d have to follow his care plan. I pointed out that I was scared, had gone to the ER, and my current GI wasn’t available–I usually follow care plans to the letter.

Then he told me I needed to drop the Prednisone from 60mg to 40mg immediately. Said anything over 40mg is basically a placebo and has no real value. He said after that we’ll slowly taper off of steroids. This raised the hair on my neck because I’m thinking “If I can barely get through the day now, how awful will it be if I crash from cutting 20mg at once?” After I had just agreed to follow his care plan. Sneaky bastard.

Then he told me that he doesn’t prescribe pain meds for his patients because they have more negative outcomes. I balked at that and said “I can’t do it without them!” He dropped it, but I realized he would never give me a prescription for it.

Why did I come here???

He said never go to the ER, always come to his office for whatever I need because “ER’s will just give you c.diff”. Which is cool, and there is an on-call 24/7 (I have none of these resources with current GI).

I mentioned my hemorrhoids. I have “thrombosed hemorrhoids” and they are very, very painful. New GI got me a consult with a colorectal surgeon the same week, to see about lancing them (ouch). He told me to take 2-3 sitz baths per day.

He asked me if I was going to continue care with him or see current GI, and I said “you”. Although, I wasn’t at all sure and it was stressing me out.

When Mr. MLACS and BG picked me up, they had a huge bag of play clothes from Carter’s. He picked out some cute stuff! I know I shouldn’t think like this but it’s reassuring to know that Mr. MLACS can handle everything without me.

I skipped my afternoon dose of Prednisone. And I was…ok. Tuesday was a blur though. I had a Valentines party/playdate to take BG to and I needed goodies to pass out. I had Mr. MLACS buy annie’s organic bunny fruit snack packs. But I didn’t like the valentines he chose (not that he had much choice the day before V-day). So I mustered my strength and made my own to stick on BG’s fruit snack packs. I got us ready to go, but I was huffing and puffing and feeling like I was climbing Mt. Everest. The party was lovely and the hostess went above and beyond with details. BG was happy to munch on the snacks and play with the kids. I, however, kept looking for places to sit down. I had a difficult time talking to the other moms, and they could tell I didn’t feel well. I managed to stay an hour. Then home and crumpled on the couch. I was hungry but nauseous. Panicky but lethargic. My hands wouldn’t stop tremoring. Somehow BG and I managed until Mr. MLACS got home from work.

But things got worse.

It seems I couldn’t make it to the toilet anymore, and I kept messing my depends. I probably wentbto the toilet 15x that day. I was in a lot of pain. And I felt like I was losing my mind. I came out of my sitz bath and fell sobbing into Mr. MLACS’s arms, and I said

I don’t want to do this anymore.

And what I meant is, live like this. I just felt so hopeless. Powerless.

Desperate.

I took 1/2 Hydrocodone and tried to get comfortable on the couch. I woke up at 12am, 1am, and 2am and urgently ran to the toilet–there was less blood, and less pain. But I needed SLEEP so I took my 40mg of Prednisone at 2am to quiet my colon, and I went to sleep with BG in the bed. And I slept 5 hours in a row! For the first time in weeks.

I felt less panicky today and more able to get up and move around (like to make BG breakfast and supervise her art project) without having to bolt to the toilet. Mr. MLACS left work at lunch to take me to the colorectal surgeon consult. He and BG dropped me off and went to play at a park.

I was surprised to find the surgeon was a reatively young woman (30’s I’d guess). Since I was there and curious about the surgery options for my disease, I took the opportunity to ask her (none of my GI’s will discuss it). She said she has better outcomes doing a 3 part surgery, which is

1. Remove colon and create a stoma for a bag (as in, poop in a bag).

2. Remove the anus and fashion the j-pouch

3. Reconnect intestines to the j-pouch and close stoma so patient can go to the toilet “normally”.

She didn’t think I should do anything more to my hemorrhoids at this time, but she gave me prescriptions for a lidocane cream and hydrocortisone cream.

And honestly, today has been better. Less visits to the toilet. Less blood. Less pain. Enough energy to make dinner (enchiladas) and an APPETITE! I ate like 3 enchiladas with sour cream snd avocado, and it tasted like *heaven*.

I should mention: I have lost 22 lbs in 22 days and I am weak. I want to get my strength back.

Then, Mr. MLACS had sweetly ordered chocolate covered strawberries from a store in my hometown, and they were delivered today. And I ate one. And it was scrumptious.

So it appears this new GI was right. It was good to drop from 60mg to 40mg Prednisone. It was good to stop taking Hydrocodone round the clock. My symptoms have improved.

I got my replacement Humira injection pen in the mail today. I will take my 2nd loading dose (2 injections) on Saturday and I can’t wait. I hope it makes a big difference.

I just have to get through Thursday and Friday. If you are the praying type, then prayers are appreciated.

XOXO,

MLACS