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

 

 

 

 

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18 thoughts on “White Knuckles

  1. Oh girl this is insane. So sorry for all that you have been going through but glad that these young doctors are helping you. I hope you get your relief very soon. Will pray.

  2. Oh my goodness girl! So all the time when you are running to the bathroom, it is primarily blood? That’s crazy! I hole this new Dr is able to help you. I am praying for you and I hope you feel better very very soon.

    • Today has been good. I’ve been comfortable without taking any pain meds and only 2-3 trips to the toilet since 7am! I’ve been playing with BG and she is so much more relaxed too. I’m grateful for today, even if it doesn’t last. XOXO ❤ you

  3. I’m behind on my blog reading and just read through your last three posts. Good God, girl, I am so so sorry for what you’ve had to go through. I can’t even imagine. And I know you feel weak and powerless and desperate, but I see you as so STRONG. I’m praying harder than ever that you continue to see improvement. xo

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