In Mexico, It's Called Remicado

I will now vividly recall the events of last Thursday, the day when Remicade made itself apparent as a non-opntion in my Crohn's fight.  Creepy stuff.

I went into the BIDMC Pheresis Unit at 7:15 to start pre-medicating [I had a reaction of chills and lower back pain during my second infusion, and we used Benedryl to help counteract it as it happened].  We tried both Hydrocortizone and Benedryl this time before my Remicade, to pack more of a punch.  

I was nervous at the start, I hate IV lines.  I felt more and more relaxed though, as I watched my favorite Girls- the Golden variety.  I was all set to start my third and hopefully, more successful Remicade infusion. 

I even got my own little tv.

I was super groggy from the Benedryl.  I started to doze a little when I felt the smallest sensation of restlessness in my legs.  I have been on steroids a number of times, and this is one of the side effects.  I have never had them through an IV though, and I wasn't expecting this feeling.  It was a bit strange, sort of just makes you want to shake it right out of your hands and feet.  You can't really do that in a hospital bed, though.  It passed after a couple of hours and really wasn't so bad.  Then, I started noticing that there was a heavy feeling in my chest.  I was tired and breathing slowly, this was more of a pressure that came on quickly.  I couldn't breathe as well, either.  My throat wasn't closing up, but I was definitely having a serious reaction.  

I called for my nurse, loudly, and she came and stopped my infusion.  Within the first 15 minutes of an IV Remicade infusion, and I'm not sure if this is for every drug, you only get 3 drops of the drug.  I wasn't yet that far in, and I was already having a reaction.  My nurse and I sat together as she asked me what I was feeling and helped me to stay calm.  Freaking out when these things happen will only make them feel worse.  You've got to keep calm so you can describe to the people around you exactly what you're feeling.  If you would have blindfolded me, I would have told you that there was a small elephant sitting on my chest, holding down my arms, while keeping his trunk over my mouth.  I just couldn't muster the breath to explain what was going on!  My nurse seemed to understand with the few words that I let out.  Then, the back pain came.  I have had lower back pain for the last few years, only really bothering me if I slouch too much, but this was different.  I had twinges of it during my first baby reaction during the last treatment.  A serious and very deep throbbing, this time.  I couldn't move my back at all while it ran through my spine. 

I waited before breathing, because it seemed to make it worse, but it only lasted about ten minutes after my nurse stopped the drip.  It sucked, but I was happy to learn that this treatment was something that I didn't want to go any further with.  I was bummed, because that meant continuing the search for what might bring relief from the symptoms of Crohn's.

A girl just can't win.

Think about it this way-- if you had just eaten a double burrito with fire ass salsa after a night of heavy beer drinking and needed to drop it somewhere, and this is what you saw everywhere you turned:

You'd be pretty frustrated, right?

I saw my doctor about a week after that whole ordeal, with labs in between and some phone calls about my other medications.  He thinks that Humira is the next step.  Thinking on it, in terms of side effects, it's like taking a step down from Remicade.  I'm happy about that.  I'm not as deep in research as I could be about Humira, but I will be, I've heard alright things.  I don't want to be on any drug, but my phlegmon is worse than we thought, and the bowel wall has been perforated.  It could result in an abscess, which would require surgery and ultimately mean more antibiotics anyway.  All of these drugs take their toll in different ways, and I certainly don't want more than I have.  5 is enough.

I am working with a Nutritional Therapist, a Psychological Therapist, my GI Team, and super supportive family to find out what's going to work best for me.  Time is an issue, and I'm trying to keep stress down.  It's nerve-wracking to have to think about this stuff all day, every day.  I'm becoming more and more frustrated that in every new direction I have turned, I've found another dead end.  I could cry forever.

Fuck that noise.  It's nice outside.

My Friend, Phlegmon

Shooting pain in the lower left side of your abdomen isn't a good sign.  On the right side, if you've still got an appendix, at least you know that he could be the culprit.  But, if you have Crohn's Disease, left side pain is not a nice thing.  I had been out of the hospital just a few weeks when I started feeling a little swollen in the belly and having a strange discomfort.  It got worse over the next week and off I went to BIDMC Emergency.  Again.

It seems as though every time I go into the ER, I am bombarded by heart monitors and swarms of medical staff.  My hear rate has been super high and I am left with those sticky little fellas that hurt like hell to remove. I recommend olive oil and not rubbing alcohol, my skin is crazy sensitive and I have small tears where the stickies were.  This is from last month's ordeal.

Since my regular GI Doc is out on maternity leave, I called within that first painful week and spoke to the fellow who'd taken over my case for the time being.  I told him about my pain, and he said that means my ulceration is 'healing'.  What a stupid thing to say.  Within 5 days of that spectacular response, I was admitted once more.  I had endured huge amounts of pain because I thought I was 'getting better'.  Hooray. 

[I have since been referred to a different doctor on the team and I am much happier.]

After a whole lot of testing in the emergency room, and morphine- which I have never need in the past, we found that I had what is called a Phlegmon.  [We weren't sure if my ovaries were at risk for infection or disease, so ultrasound and a pelvic CT scan were ordered, and once that was out of our minds, we concentrated on this new infection]  A phlegmon is basically a gathering of pus and/ or bacterial infection that pretty much hasn't amounted to anything.  So, pretty much an abscess or fistula that would/ could have formed but hasn't yet.  Kind of like me, right?  All the goods but no formed plan?  Awesome.  At least I can relate to my infections.

If you have a little body, and you're unsure of what your IV needs are, ask your nurse.  They will explain everything you need to know, and they will start your IV very slowly for you if you ask.  Some meds sting a little, and it's really helpful to have a god idea about what's happening.

I was started on two IV antibiotics, which usually work together for things like this.  I had an omental infarction about a year and a half ago, which is another infection- pretty much of the guts outside of your colon.  That was super fun.  Anyway, the two antibiotics are Flagyl and Cipro [those are shorter names for longer meds].  I will be finished with them one month from the initial start date.  Because I needed them through an IV, and we were still unsure of the path of this phlegmon, I had to stay and be monitored for 5 days in the BIDMC suites.  I was in the Farr building this time, a first, and the staff was fantastic as usual.  The only thing about being in the Farr building that I didn't like was the lack of younger people around me.  

I found a dry erase board in one of the computer rooms and made myself a little more comfy. 


There were Therapy dogs in our building!  Their owners, who are volunteers with the hospital, were awesome, and each pup had a great and very friendly personality.  I got to hang with three of them during my stay, and they're a real help when you're lonely or scared.

Ziggy!


Of course, for most of my being admitted, Steven was away on business- this time for two weeks.  That's just the luck we have.  He was in Denver filming for Chrysler, and then in Austin, directing his first commercial for television!  Zipcar!  I am soo proud, and his producer sent him home a day early to be with me in the hospital.  I also had a visit from my friends Rachael and Meg, and it made my week.



I have lots of blog-worthy stuff on reserve from the past few weeks, and I'll load ya'll suckers up soon.  Appointments and meetings that went really well, and some info on new doctor peeps.  Today, I am in some pain.  Healing from an infection like that will leave you with tum tenderness, so you can't rush much.  It gets me out of doing dishes.


I hope everyone had a great Easter weekend.  And if Easter isn't your thing, hope you had a great weekend in general.  I spent mine in Marblehead, healing and having yummy meals with family.  Coloring eggs is always a good time, even if the tattoo-stick-on kind doesn't end up working. 


I feel like I've gotten to a point where I'm gabbing just to gab.  Been a while since I've written and I want to talk forever....  I'l leave you darlings with this.  If you feel like you're in a lot of pain, and that you can 'tough it out', think about your options.  Trust me, you don't want anything getting worse than it has to.  And if you talk to your doctor and get feedback that you're not sure of, don't be afraid to ask another one.


Trust your guts.  Not his.

Hello, Strangers

Been quite a while since my last post.  

Things have been a bit crazy in my posted-up-ness here in Cambridge.  I took a trip to the old Emergency Department on Friday afternoon, to try and figure out why I have been so nauseous lately.  I started a new med last month and stopped it two weeks into treatment because it made me feel sick to my stomach, but ceasing the drug didn't make those awful feelings go away.

It turns out that there's been a pretty nasty virus going around Boston.  People have been in and out of the ED with symptoms of vomiting and diarrhea, dizziness and fevers.  Unfortunately for people like me, with Autoimmune Disorders, viruses like these can do much more damage.  My body suffers a lot more than someone who isn't sick.

The amazing thing? These symptoms DO NOT seem like flare symptoms.  There is no blood, and minimal cramping.  What's happening seems to be virus only, and I am praying as hard as I can that they are!

Some of this is a bit embarrassing, but I always offer full detail in my fight against Crohn's Crap.  

In the hospital, nurses help you with sponge baths.  Here at home, I have been too weak to stand so long in the shower, so I set up a home sponge bath station of my own.  

I also recommend spending as much time as you can in open sunlight.  It's healing!

Pup and I open our bedroom window and expose our bellies to the light!  It feels good and makes the pain go away, if only for a few minutes at a time. :)

I've been cooking when I have energy in the day, and eggs are always amazing!

Add your favorite fresh fruit, and your tum will thank you...

So, while trying to keep from heaving while this virus wreaks havoc on my system, I am moving around with the energy that I do have and fill my body with things that will help me to feel soo much better.

Are you taking care of your bod?

Have a great weekend!