ER Part II: Admitted

So to continue my ER waiting room story…

Mr. MLACS and BG dropped me off at the ER circa 6pm. Mr. MLACS asked me to check the tires because our SUV indicated low air pressure. I half-assed kicked the tires and didn’t see anything wrong. Well, Mr. MLACS did his due dilligence and took the truck to a gas station to check the air pressure. Lo and behold, one of the rear tires was missing 20 lbs of air! Clearly there was a leak. So he took BG to a tire shop down the street to have it repaired. Luckily we didn’t need new tires, just a patch job. More importantly, thank God Mr. MLACS was driving when this happened because I often ignore the truck’s “warnings”–most of the time they are false alarms. It could have been a dangerous situation.

I had packed a bunch of snacks for BG (organic squeeze packs, organic cheddar bunnies, organic string cheese stick) so she happily sat and ate her snacks and watched the guys working on cars through a picture window in the waiting room. The truck was finished by 8pm and Mr. MLACS took BG to Raising Canes for a late dinner of chicken strips (not the healthiest but we only eat out 1 or sometimes 2 meals per week so not a big deal).

By 9pm they were done but I was still waiting in the ER…

Now I was feeling anxious because I had not intended to be here more than 4 hours total–awfully naive for someone who has visited ER’s at least half a dozen times.

BG fell asleep in the car but apparently wet through her diaper and woke up. Mr. MLACS got her changed into her spare outfit and placed a blanket in her carseat as a barrier to the urine-soaked seat cover. BG was upset and Mr. MLACS sat next to her in the back seat while she watched cartoons.

Around 10:45pm I called Mr. MLACS and upon hearing the weary tone of Mr. MLACS’s voice and that BG was still awake, I was ready to give up and go home–but I wanted my lab results. So I decided to stand in line at the admissions desk to tell them I need to leave and ask for a copy of my lab results. I stood there for a few minutes, and then…

A nurse came out and called my name! It was FINALLY my turn! Ironically, just as I had decided to give up.

The first thing I did was ask for socks (hospitals always have socks and you get to keep them–they are non-skid and awesome) and a warm blanket because it was freezing in there. I changed into my gown but kept pants on. Went over my symptoms and medications with my nurse. Then a PA came in and informed me that I am anemic, but not “terribly” anemic–my hemoglobin level was 10 (I think “normal” is 12). But it was disturbing because my hemoglobin was 14 just three months ago–falling 4 points is a lot.

The PA left and after awhile a young MD and her “shadow” came in and talked to me and gave me a “digital rectal examination”. While the MD was there, the nurse came back and gave me zofran, bentyl, and morphine. The MD asked me what my anemia symptoms were and I listed them, and she said it would be a good idea for me to have a blood transfusion–usually your hemoglobin has to be below 7 for a blood transfusion, but I had fallen four points and had a lot of symptoms. If I agreed then I would have to be admitted to the hospital to have the transfusion. I said I would do anything to feel better and stronger.

I talked to Mr. MLACS and he said to go for it. I asked the nurse what she thought and she said do it.

By this time it was after midnight and I just wanted to either leave with my family or send them home to go to bed. The PA came back and was skeptical about me being admitted for a blood transfusion because my hemoglobin levels aren’t that low. She said the “hospital team” would have to evaluate me to see what they wanted to do. Uhg.

**somewhere in here I was wheeled away to have x-rays of my chest and abdomen.

I told Mr. MLACS to just go home because I was pretty sure I was being admitted. I begged him to be SO careful because of all the drunk drivers (I could feel his eyeroll through the phone but I had to say it because *anxiety*). I asked him to keep his phone close just in case.

I started to fall asleep and a new MD–a hospital internist–came in and talked to me. I told him the deal: been bleeding for 4 months, got better on Humira + prednisone but then worse when I dropped my prednisone too low, now current GI won’t do anything without 2nd opinions so I’m stuck like this until somebody/anybody helps me. He said “absolutely not” to the blood transfusion and also got an attitude when I asked about IV iron (which is preferred over oral iron for IBD patients)–Internist said it’s too expensive and I’m not anemic enough to warrant it. *rant* This offends me and pisses me off because he is “treating the numbers not the patient”. My symptoms and history show that I am in distress. Whatever it was 3am and I just wanted to be admitted so I could go to sleep. Internist said he wanted to put me on high dose IV steroids. I balked and said sure but only if I won’t have to wean again. He said I shouldn’t need to wean much if at all. So suddenly I was getting admitted for IV steroids instead of a blood transfusion. I had seen an ER MD, a PA, and an Internist MD and every one of them told me something different and confused the hell out of me. But I was proud of myself for keeping my wits about me even with their nonsense and my exhaustion and the morphine.

So I was finally wheeled up to a room and I vaguely remember texting Mr. MLACS my room number before I fell asleep. That was Friday. When I agreed to be admitted for a blood transfusion I was given the impression that I would be released the next day (Saturday).

The nurses woke me up several times to take vital signs/draw blood/give medications but I was exhausted so I barely opened my eyes and kept falling back asleep. Then there was a parade of doctors: Colorectal Surgeon, Internist MD, and Gastroenterologists. The Gastroenterologists were from the same group as the local GI that I *fired* because his nurse didn’t return my calls when I was serious crisis. I only saw that GI one time but these other GI’s kept mentioning his name as though I was still his patient. It was awkward for me to have to correct them–I said “things didn’t work out” with me and the local GI and that it was really his nurse’s fault and I know he is a good doctor. Whatever. They didn’t seem very interested. I was actually shocked when they told me I needed to stay in the hospital for the weekend *at least* and get pumped with IV steroids. That was so NOT what I signed up for! I want to wean off of the steroids! I wanted a blood infusion to quickly fix the anemia and give me some energy and sustain me until one of my GI’s “fixes” me. I wanted to go home to Mr. MLACS and BG. But one of the GI’s turned to me and said “I think you don’t realize how sick you are”, and I thought… she’s right but so what? I was worse off 2 months ago and never got admitted, so why now? I called Mr. MLACS in tears, apologizing over and over for allowing myself to be admitted because if I had only known they would pump me with steroids and keep me all weekend then I wouldn’t have agreed to it. I was SO frustrated. He told me not to worry and that BG was asking for me and they would be there soon to visit.

Mr. MLACS came to visit me Saturday, Sunday, and Monday. Of course Mr. MLACS had to take off work to care for BG and I felt guilty about that because he has a big project this week. But he pretended it was no big deal, which was sweet of him. When they would visit we would walk downstairs and grab snacks and walk around. BG was like a little goodwill ambassador and said “Hi!” to everyone that crossed her path–people would smile and tell us how adorable she is. Then we would hang out in my room and I would cuddle BG and we watched cartoons until she became restless and it was time to go. It was hard to watch them leave, but I won’t lie–it was good for me to just lay in bed and sleep for three days straight. On Sunday the GI agreed that I could be released the next day.

But on Monday the Internist MD came and told me that my hemoglobin had fallen to 8.9 and he offered that I could have an IV iron infusion and I jumped at the opportunity. He said I should be done and out the door by 10am. But no. It was almost 3pm before I was released. We tried to go and eat but BG had missed her nap and was obnoxious so we ended up getting our food to-go.

Today I have been fielding calls from ALL my doctors because they were all notified that I was in the hospital. My biggest problem right now is that I planned a trip to my hometown and planned to see my Midwest GI on May 1st. But then my current GI referred me to a *superstar* IBD specialist in his city and they also offered me May 1st. So now I have to choose. And much to my chagrin, I think I will have to cancel my trip home to the Midwest because I just dont think it’s wise to travel alone with BG for a week in my current state. It’s a 10 hour drive and then we’d stay in a hotel for a week. It’s 3pm now and I’m already anxious for Mr. MLACS to come home and take over with BG because I just want to lay here and not move. I’m still passing blood and going to the toilet 5-10x per day, I’m tired, and my rectum hurts. So… I guess the only reasonable option is to cancel the trip home. And I’ll be seeing the Southern IBD specialist on May 1st.

I hope she can “fix” me.

XOXO,

MLACS

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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