The Battle Begins

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So it looks like I’m being discharged shortly, I can’t wait to go home.  I’m feeling a bit better and can keep food down with minimum pain, and I am most certainly looking forward to stopping at Panera and grabbing a bread bowl with cheesy broccoli soup on my way back to the house.  As always, despite my bitching, all of the nurses, aides and doctors were wonderful here.  They were even wonderful the couple times I lost my shit because I was in pain/tired/or just a bitch.  Just another reason why I keep coming here for treatment despite it being 45 minutes from home.  Anyway, I am escaping!  Leaving!  Running home!  I can’t wait to see my kiddo and all the furry minions at the house.  :)

One part I’m not looking forward is getting my medications.  I am no longer going to be getting my Remicade infusions, I am being switched to Cimzia, which is an inject-able.  It’s not necessarily as strong as Remicade according to my GI doctor, but I’ve already built up a resistance to Humira and Remicade so I’m running out of options.  The nurse I have is looking into where I need to get the prescription from, and my GI already started the battle for it with my insurance.  Cimzia before insurance, is approximately $3,000 before insurance for 1- 200mg dose… and I need 2 doses for the first month.  My healthcare also will not cover it the drug with out “strong documentation” that all other drugs have failed me.  *sighs*  I always hate this part of it.  The last time this battle played out (beyond the one with Entocort, which I won pretty quickly) was when I went on Humira.  It took months to get my health insurance to approve it, and by the time they did?  Humira stopped working for me.   Yeah.  So I’m thrilled.  Beyond that I’m staying on my prescription for 6mp as well as taking favorite of all drugs : Prednisone (are you guys ready for mood-swings and moon-face???),  I can’t wait.

I don’t know.  I’m doing my best to not be stressed out about it.  Just focusing on getting home, getting relaxed and finishing getting well.  I want to be in top shape for my kiddo’s 7th birthday in a couple of weeks.  Wish me luck, and Crohns be damned.

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Day 2 – It’s 5am – Get out of my room

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Yup, I’m still here, I was roaming around outside of my hospital room today though.  Always nice, I even ran into a couple of my nurses from the previous stays.  I don’t know whether or not to be flattered that I was remembered or not, but oh well.

Things are going alright, the aides and nurses left me alone most of last night so I got almost a full night of sleep (with out pain medication!!) and am feeling much better.  The powers that be let me have some clear liquids yesterday, which trust me, I really appreciated.  The aide that brought me my tea laughed and said I was the happiest patient in the hospital.  Haha, what can I say, I’m easily pleased.

I have been up for quite a bit though, it seems like all the people who didn’t stop by overnight decided to come in at the same time this morning… 5am.  I had a Surgical PA, two aides, my Nurse, and of course someone had to come in and draw my blood.  I shit you not, everyone was in here with in 10 minutes.  I had had grand dreams of sleeping until after the sun came up, but… nope.  After the blood draw I just gave up and ordered a tea.

One of the two surgeons I am seeing stopped in, I happen to like him despite is poor bedside manner.  He is very straight forward and very easily agitated.  He’s not sure what the plan is for me, he thinks I should try eating soon and we can go from there.  However he agreed that someone should have stopped in and gave me an update last night.  So he’s off to check with the other surgeon and my GI to see what’s going on.  *Shrugs* I’m just happy I have one pro-active doctor, usually they avoid me… which I give them good reason to. :)

So as for my Crohns Disease goes, we knew I had a patch of inflammation and a fistula that runs from my bladder to my intestine.  I am getting Remicade infusions every 8 weeks and have been working to control the other symptoms of my disease through diet and exercise.  I did very well, had very little symptoms for almost a year (minus the symptoms from the fistula), I was >< this close to remission.  I had a bad time with the fistula once (when I was a bit late for a Remicade appt), and then just recently I started “flaring” again.  I put quotations around “flaring” because honestly, beyond the obstructions and the fistula (the cause of the obstructions) I haven’t had what I call – normal symptoms – of a flare since I began Remicade almost 3 years ago.  Out of nowhere, a handful of weeks again I started running to the bathroom multiple times a day.  The stomach pains came back and the fatigue worsened, and I got nervous.  I made an appointment with my GI, but before the appointment came I had my Remicade infusion and the flare went away.  My appointment went well, and I went back to normal life.  A couple of weeks after that the flare came back… and an obstruction.

When I got here I had an x-ray and a cat-scan done, and while they did show an obstruction, it also showed another patch of inflammation.  My disease managed to spread to another part of my intestines.  My GI brought up that it’s possible that either A. the dose of Remicade is now too small, or B. my body has built antibodies against it, just like it did with Humira.  So I need to talk to him about solutions to that, either adding meds or changing meds, I haven’t burnt through all the biologics yet but there isn’t many left that he thinks will work.  He mentioned 6mp again, but I had too many side effects and steroids made me nuts.  So we’ll see.  Blah.  I think that’s the part that gets me down the most.  In the 7 years I’ve been sick, 6 years diagnosed, I haven’t gone into a full remission yet, and it’s disheartening that I still might not get that chance.

Ugh, I don’t know.  The good part?  My favorite nurse just started shift, she’s back out there hunting down information and doctors for me.  (she was the one who convinced everyone to let me have tea) So wish me luck!

Everything You Ever Wanted to Know About Silence

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This is one of my favorite bands.  When I first started listening to them, I fell in love with the raw emotion and the bitter wounds these songs painted a picture of.  Years later, I related to this band more than I wanted to.  The lead singer, Daryl Palumbo, suffers from Crohns Disease.  This song was specifically written about the disease and it’s effect on his life.  The lyrics make me stop in the middle of thought every time I hear them.  Give it a listen though it’s not everyone’s cup of tea.  If you’re daring, Google the lyrics.

I’ve never reached full remission, not once, with this disease.  I’ve come very close over the years, but as they say, no fucking cigar.  For the past couple of years, I’ve only dealt with problems from my fistula (connects my bladder and intestine).  Pretty lucky, and I am have been thankful.  The “typical” symptoms have for the most part, stayed away.

Well.  They did stay away.  Past tense.  Yup.  I am back in a full-blown Crohns flare.  I had been crossing my fingers over the past week or so, thinking that maybe it was a stomach bug.  Maybe I really wasn’t getting sick, it was a fluke.  It had to be a fluke.  I even had a moment of hope earlier.  I only got stuck in the bathroom just a couple of times.  I managed to eat *and* keep it down.  Luckily my damned innards decided to at least keep the false hope up until I got home.

To be quiet honest, I am having a hard time dealing with it.  The fistula problems and the fatigue are pretty difficult, but the full blown flare?  It’s been pretty hard to deal with all of the symptoms combined again.  Then of course there’s the fear.  The last time I had a flare, was a couple of years ago.  I had been on Humira for a couple of months, and out of nowhere got sick again.  Then I got sicker.  Then the weight starting falling off.  Humira was no longer working, despite increasing injections.  That’s how I ended up on Remicade to begin with.

What if Remicade isn’t working anymore?

I don’t know.  I’m trying not to worry about it, I’m trying to keep my stress down.

Crohns Disease: what I’ve learned from it

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Crohn’s and Colitis Awareness Week
December 1-7th

I’ve been sick since June of 2007.  I was diagnosed with Crohn’s Disease (after several misdiagnoses and the almost dead-part) in April of 2008.  It’s been 4, almost 5 years now living with Crohn’s.  It’s been years of grieving what Crohn’s has taken from me, what it’s put my family and myself through.

The drugs are almost the worst part.  6mp and Prednisone have been the worst for me, although the multiple allergic reactions to Humira come close.  6mp and Pred alone caused moonface, hair-loss, weight gain/loss, joint pain and inflammation, migraines, nose bleeds, paranoia and mood swings, and PAIN.  (I’m currently only on Remicade, I am now refusing Prednisone, PERIOD)

I looked at it like this:  So I have this life long disease, that makes me feel like someone is chewing their way out of my stomach, from the inside, with a pack of rabid dogs.  So while my weight yo-yos 40-60lbs I have to take these drugs that make me even MORE miserable in an attempt to go into remission? Greeeat.

The only other thing that really got to me, is when I would have really bad days, days where getting out of bed was a challenge, it really hurt me inside to know that I could be in the forest preserve with my daughter, or working on my house, or hell, anything.  The bad days were brutal.  They would get me in such a funk, I’d think about how if I didn’t have Crohn’s I could be such a better mother, girlfriend, employee.

I focused so long on the things I had “lost”, the things I was “missing out on”, the pain I was in, that I missed the things that living with Crohn’s Disease has given me.  Sure, I have to deal with being sick and the drugs and doctors, but you know what, it’s given me a different perspective.

It took me a few years, but you know what?  I finally realized that I’m a better person because of my battle with Crohns.  I’ve learned that I can still be a great mother even if we don’t play outside EVERY day, I’ve learned that my daughter is very understanding and bright, and her experience with me getting sick (and the hospital stays), has helped her understand another sick little girl and befriend her.

My being sick has forced me to rely on my family and friends, even though it’s against my nature, and in return I learned how much the people I care about, care about me, and how lucky I am to have the people I surround myself with.

I have learned that my self worth is not based on how many days I feel like utter crap, but how many days I don’t let it get me down.  How many good days I have, and how many days I go out and do what I do regardless because FUCK CROHNS.

Because of this disease, I learned that I can have a relationship with a very understanding man who will stand by me and support me through every step I have to deal with, a forced step or not.  Because of this disease, I’ve learned that it’s okay to lean on people and let them know I hurt.  It’s okay not to be super woman all the time.

Most importantly, with this disease, I’ve learned how strong I really am.  There have been some moments where I have been terrified, where I didn’t want to face it, where I wanted to trade in my body on the black market.  Lets face it, I’m going to have more of those days, it’s inevitable.  I’ve learned that I’m strong enough to get through it, make it.  There is a difference between Living Life and Just Living, and I refuse to miss out.  This disease has taught me that I can make it through and enjoy life regardless.

I’ve come a long way with this disease, as many of my “Crohnies” have.  I’m proud of us, I’m happy to see awareness of both Crohns and UC spreading.  Now maybe one day we can find a cure.  In the meantime, I’ll be right here.  :)

Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient.  I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count.  My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas.  I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult.  Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy.  He seems alright, however it made my day when I managed to make him uncomfortable.  After he described the surgery I said “You know um, hey.  I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my intestines and what not… and if you find him… please bring him back.  I miss him.”  It was like I kicked his puppy.  Or first born child.  Either way after a good 20 second blank stare and a blush, he laughed.  Which means he’s okay in my book.  So far.

So here’s the deal.  Crohns has destroyed at least a 2 ft section of my small intestine.  For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst.  Said section developed a fistula that attached itself to my bladder.  So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder.  Yeah.  I’m 26 years old and I’m having bladder reconstructive surgery.  Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery.  The surgeon wants it before the year ends, and I want it before the holidays.  Nothing like major surgery before Christmas.  So I’m aiming for the beginning of December.  I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time.  Complete remission.  Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery?  Hell no!  It’s something I’ve literally been avoiding for 5 years.  It took major convincing to get me to go on Remicade, even Humira.  Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital.  However, after 5 years of this, I’m tired.  I’m tired of the constant pain, the stomach issues, the 3 year long UTI.  I’m tired of hospitalizations every other month and steroids.  I’m tired of being sick.  Surgery gives me the chance to be healthy, at least for a little while.  So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.

Take it back, I want it back.

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Have you ever felt like you have lost control of your body?  That no matter what you do it’s not yours anymore?  My body changes so much I barely recognize it.  In the past 7 years I’ve gone from 180 to 140 (diet and exercise) to 160 to 115 (Crohns) to 140 (Remission) to 125 (Crohns) to 145 (now – Prednisone and psuedo-remission).  I don’t recognize my body.

I look in the mirror and sure, there’s that scar from the bike that went into my leg.   Oh look, that birthmark and can’t forget my tattoos.  I recognize the chicken pox scars on my rib cage and the scars from my boots on my ankles.  Other than that?  Meh.

When I was at my lowest weight I hated myself, I looked in the mirror and saw my ribs poking out and my hip bones protruding.  I looked like I had starved myself and I resembled more a bobble-head than a person.  I looked in the mirror and hated my body.

When I finally got up to my resting weight 130-140, I felt a bit more comfortable but the weight had distributed differently.  I got used to it though, and tried to learn how to wear clothes differently.  I figured I at least I didn’t look like I was starving.  My body could still do the things I wanted it to.  I could dance, I could run my few miles a few times a week.  I could live.

Then I got Pneumonia.  It became harder for me to run more than a couple of miles at a time, that was back in what? June? I am still coughing up stuff.  Then Tim left, and being a single mom of a 4 year old?  Well, let me tell you, it doesn’t afford running very much.  If you have no sitters, like myself, no running at all.

Then I started the Prednisone after the Humira failed.  Almost immediately my body changed.  My face swelled and I lost sight of my cheekbones that drew so many compliments.  My fingers, wrists, ankles and feet swelled and ached.  I gained 10 lbs.  I lost my body again.  I couldn’t fit into my clothes and I hated looking in the mirror.  Nothing like moon-face and two psuedo black eyes looking back at you to kill any good mood.

I am weaning off the Prednisone and am almost done.  The swelling has gone down and I dropped 5 lbs already but I still don’t recognized myself.  Looking the mirror today I realized I don’t see me anymore.  I miss seeing myself in the mirror.

Today I have decided to get my body back.  I have decided to take it back and keep it.  I am on so many drugs I can’t even count them all anymore, but they will not have me.  I’ve slowly been making changes to my diet and sneaking in quick work outs here and there, but today?  I’m setting a goal (and ya’ll know how I am about achieving my goals) to get myself back.  I’m speaking to someone about products she’s using to prevent further hair loss (Since starting 6mp my hair is thinning, and quickly) and what she uses to help her skin (break outs).  I’ve re-created a stronger work out schedule since I can no longer go running, and I’m changing my diet back.

I will get my body back.  I will learn to see myself in the mirror and again be proud of myself.  I will be me, not just inside, but out.

Fuck Crohns.

Anger. Acceptance. Moving right along.

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Let me tell you something.  I went to start writing this entry a little while ago.  I found I had too many conflicting thoughts in my head and things were just not coming out just right.  I grabbed my cup of coffee and sat back down after a quick pace around the house, and after a few minutes, my head cleared.  I found a remedy to the craziness that can be my thought process.  A dog on my lap, a cup of coffee, and the crickets outside.

So I went to my G.I. today, the appointment over all went smoothly.  We discussed my (still-there) symptoms and my current doses of my meds.  I guess Dr. C is concerned that because my body built up the anti-bodies against the Humira so quickly that the same might happen with Remicade.  We discussed my options for the future.

A. Surgery (Fistula related – and most likely have immediate relief)
B. Continue Remicade un-aided (and risk building an immunity towards the drug and having surgery anyway)
C. Continue Remicade and add in 6mp to suppress my immune system (more?) and hopefully keep the Remi working long-term (and increase my risk of lymphoma and other serious side-effects down the line)

 To say I was not expecting that conversation is putting it extremely lightly.  However, I was mature (which is highly unlike me when it comes to medical issues, especially the quality of life vs quantity of life issues) and I talked to him about it and got all of the information I could (most of which I’ve had for months).

I’ve always said that I want to live my life no matter what.  I do not want Crohns to dictate my life and what I want to do.  I’ve also been trying to avoid surgery as well, to me that is last resort, I know the success ratings, but at this point in my life, I don’t want it.  I’m 25 and I am terrified I’ll set off a chain reaction of surgeries and med issues..  This is my personal choice (so don’t argue) and I’m going to stick by it until it’s completely needed.

So surgery is out, unless something serious happens.

So Dr. C goes on to say in that case, we need to find a way to close this fistula asap. We also need to find a way to prevent my body from turning against the Remicade.  Which is where the 6mp comes in.

We discussed the side-effects of that drug, which the one that I am mostly concerned about (who needs a pancreas, fuck-a-pancreas) is the lymphoma risk, which is also a risk I’m taking with Remicade.  Dr. C informed me that it will up that risk being on both drugs, especially on the 6mp.  Yet again it comes down to making my symptoms go away so I can lead a some what normal life, and it seems like adding the 6mp will make that happen, as well as allow me to get off the prednisone the rest of the way (I’ve already begun weaning myself off).  The day-to-day side effects are much more bearable than the steroids I have heard, which is important to me as well. Plus, obviously the pred isn’t helping me much anyway.

So I chose to start 6mp.  I got my prescriptions, my instructions for bloodwork/follow-ups/generally annoying doctor crap and headed out.  I was supposed to start it today, but unfortunately could not make it to the pharmacy.  So tomorrow will be day 1.

You know, I know that a lot of Crohns patients end up on 6mp and are okay with it, but I’m just wierded out. I’ve been anti-meds for so long, that I had a hard time just taking all of those Pentasa pills.  I’m sure some of you remember the blogs that came around when I started the Humira injections in March/April, I’m just not a fan of these hardcore drugs.  So beginning Remicade earlier this week was rough on me mentally too, now adding 6mp?

To say I was overwhelmed and upset (at first) is putting it mildly.  My thoughts were going insane.  So on the way home, I put in my ear-buds (we were on the bike) and blasted my thoughts with some tunes and just worked on hashing everything out.

I’ve decided to stop worrying about the long-term effects of these drugs.  They aren’t any more daunting or terrifying than completely uncontrolled Crohns disease is, at least not to me.  I’m okay with starting yet another drug (I don’t particularly like it, but hey) and I’ve decided to try and make the best of things no matter what happens with this disease.  All I can do is smile and be happy, the end result is in the future, what matters is the now.

So I hope the 6mp helps the Remi.  I hope this all works out and the fistula heals (after god, uhh, since last fall?) and my body can get a break.

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On another note, I just want to say I feel so incredibly grateful for the people I have in my life.  My doctor who has dealt with my shenanigans for 3 years now despite me doing my best to ignore this disease.  My parents for helping me out and letting me vent.  My online friends and support network (thank you twitter, you’re not just a slut anymore) as well have saved my sanity more than a couple times.  My friends who send me random texts when my mood seems a little down or “just to check up” on me or see if I need anything.  To the boyfriend who hasn’t batted an eye about dating someone with a Chonic illness.  The boy sat through my infusion and came to my GI appt with me.  I can’t say what he thinks inside, but so far just knowing that I have a hand to hold if I need it so so reassuring.

A lot of you know I’ve been struggling mentally with certain aspects of being sick, and I just want to say thank you all for everything.  Every-thing.

Well, except for the picture of someones ass I got.  Granted, it made me smile (and choke on my soda), but no one should write “No worries” in sharpie on their ass.  That’s just strange. Keep your fetishes to yourself.  :)