Christmas with a Flare


Yup, I predicted it.  My Crohns Disease is fully flaring.  What is it with the holidays and this disease kicking my ass (pun intended)!?  I had started feeling better, then on Christmas eve, I started with some severe cramping.  It had been happening on and off for weeks, so I didn’t think a whole lot about it.  I just made sure that I ate really soft foods, and took it easy.

Christmas day was really rough.  I had to have gone to the bathroom upwards of 20 times.  Anything I ate or drank went straight through me, but the pain was manageable and my parents are familiar with this mess, so I wasn’t bothered by using their bathroom.  On the way home from their house, the pain ramped up again, but I was determined to not end up in the hospital on freaking Christmas.

Got everything in the house, the kiddo in bed, and laid down for some sleep myself.  I actually managed to get some zzz’s, but at some point my daughter woke me up (she woke up at 12pm thinking it was morning).  When I got up to get her back tucked in, my bowels started moving and the pain was unbearable.  I laid in bed for a couple of hours, trying not to cry nor wake up the boyfriend when I clenched up due to the pain.  Eventually I gave up and moved to the couch.

It was horrible.  I had been so determined to have a normal set of holidays, and it all spiraled out of control.  I sent the boyfriend to work, but seeing as how the pain was bad enough that I couldn’t walk, I called off of my work.  I tried to call my GI doctor’s office for the better part of 4 hours, turns out my GI wasn’t in, neither was my normal nurse.  I ended up playing phone tag with her until the evening, where she finally told me to go in for pain management.

So the day after Christmas, I ended up going into the ER and got some fluids (I hadn’t been able to drink since the day before) and some IV pain medication.  They let me sleep for a little while, and gave me a small script for pain meds for at home.

To be completely honest, I’m pretty scared and emotional about this whole ordeal.  Sure, I’ve had obstructions over the years, and that pesky fistula, but this level of pain and diarrhea?  Not since I first got sick 7 years ago.  The pain meds help take the edge off, but they make me incredibly nauseous.  I mean, if I move I have to fight back the gagging.  So I have two choices… extreme debilitating pain, nausea, or diarrhea or extreme nausea.  Peachy.

I just hate this.  I’ve been useless since Thursday night.  Despite the IV yesterday, I’m dehydrated again, so I barely even get up to go to the bathroom.  Either it’s too painful to walk, or I’m too dizzy and nauseated.  I don’t know how to make it through work like this, which panics me too.  I lost a good handful of days to Noodle’s back to back ear infections, and I don’t want to get in trouble for missing more days… even though I can’t help it.  I don’t know.

I’m glad I made it through Christmas, and what a good Christmas it was.  My daughter told me “Mom, this was the best Christmas ever.” and that made it worth it.  However, I would have much rather gone to work yesterday with my new pens and post-its, and counted down the minutes to get out of there instead of being stuck immobile on my couch, fighting tears from the pain.

This disease genuinely sucks sometimes


Infusions and Awareness Week


Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.  It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.  As you can see from my expression up there, I’m not having a good morning.  I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.  It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.  I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.  After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.  Whatever works I guess.  He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).  At least he’s willing to get creative.  However, being stabbed repeatedly isn’t my cup of tea after a rough morning.  ::Sigh::

I’ve been doing alright lately.  I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.  Most notably was a loss of appetite (I like my food dammit) and hair-loss.  The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome).   I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.  Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.  Welp, here I am.. still kicking on Remicade.  Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.  I’ll argue my case later with my GI.  If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.  Take it as it comes.

One of the things that really, really gets to me, is the fatigue.  I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.  Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.  I think that’s the most frustrating part of it.  Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.  I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.  I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.  All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.  It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.  I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).  I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.  I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.  The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.  (

It could be worse though, and has been worse.  Most days I’ve been managing to keep a positive outlook, some days though it just sucks.  Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.  Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.  Some days, even my online support network can’t even get me out of a funk.  Either way, the best thing to remember is that those of us with IBD are not alone.  It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?  Where I used up all my spoons before I put my shoes on?  I’ll make it, you’ll make it, and things will get better.

“You’d rather whine and cry about your Crohns…”


As pretty much anyone who reads this blog knows, I have Crohns Disease. I have been diagnosed for 6 years, sick for 7 (got sick the day after my daughter was born). There is a brief description of it, but if you do a quick google search for “Crohns Disease Forums” or “Crohns Disease Blogs”, you’ll find some more. Crohns Disease is one of many considered an “Invisible Illness”, part of the IBD family along side Ulcerative Colitis. A lot of the time, someone with Crohns looks pretty healthy, accompanied by “you’re so thin, you look great”! That’s because Crohns Disease is internal, you won’t see any gaping flesh wounds or casts around an apendage. It’s all our insides trying beat us up.

It’s thought to be an auto-immune disease. Frankly, our immune system decides that it hates our literal guts and starts attacking. The outcome is severe inflammation which leads to ulcers, fistulas, bleeding, malnutrition, severe pain and a host of numerous other symptoms, some are life threatening. There is no cure as of now, so those of us with IBD are stuck on long term medications, most of which have some very un-friendly side effects. The problem is, is that because there is no cure, the best we can hope for is “remission”. Remission doesn’t mean that the disease has gone away, but that there are no current symptoms. Some people are lucky and find a drug that works for decades, many of us aren’t so much. So that leaves us with chronic pain and symptoms that aren’t so easy to talk about.

I use my writing as a way to vent about what I have to deal with, it’s one of the only ways I can think of. I figure, if I open my mouth and tell people what I (and other people) deal with living with a life long disease, it’ll give someone who needs someone to relate to a hand. Maybe if I open my mouth and share my story, or tell people when I’m having a bad day, maybe it will give someone else the courage to stand up and say “Hey! I feel really sick! I need support!”.

It really is hard though, for many reasons. I know one of the biggest reasons is that I don’t want to sound like a complainer. 90% of the time, I’m in pain, and in the bare minimum, I’m uncomfortable, yet to most who ask me I’ll tell you I’m fine. If you feel like crap every day, and say so, who is really going to believe you? Who is going to want to listen to you complain day in and day out, regardless of whether or not that’s your daily life? So I shut my mouth. It took *years* for me to start telling people that I don’t feel good. Even now, 7 years after getting sick, I still only tell people I’m having a rough day if I’m feeling *really* bad. Even then it’s confined to the internet or to a close few friends or my coworkers. When you’re sick a lot of the time, your worst fear is becoming a burden on your family or stressing them out. I used to be terrified of that, I did. I still don’t tell my own Dad when I’m feeling really sick or yucky, just because I don’t want to worry him. I don’t want to inconvenience my family, so I keep my mouth shut and deal with it. The only times I’ve asked for help is with the handful of hospitalizations, where I had my Dad watch my daughter, so she wouldn’t have to stay with me. Even then I felt horrible, even though I know I shouldn’t and that my family (at least my parents anyway) will always be there for me.

The downfall? If we don’t open up to each other, to our friends and family, we isolate ourselves. We end up suffering in silence and alone. If we don’t say something, anything about how we’re feeling, no one will know what we’re going through. How can one gain support if we keep our mouths shut? It’s the most horrible thing to be in pain and feel like your left all alone to deal with it, day in and day out. No one should have to deal with it, regardless of the condition.

However, as I learned today during a fight with a family member, it really does backfire. Sometimes, even when you just tell your family, and only when you need to, when you post online, just to get some kind of feeling that someone cares… it still will bite you in the ass. (haha, pun intended)

So today, while fighting about something completely unrelated, my own family member told me all about “what I’m putting my family through” because of my Crohns. Mostly because I opted out of a major life changing surgery (on the advice of a surgeon I’ve seen). “You’d rather whine about your Crohns, about how hard your life is…. (insert insults about me never finishing college – accounting is not my thing – and working in the stone industry) … Stop whining about how hard your Crohns is when you don’t have the nerve to get the surgery that you need (or don’t need, but she never asked about that). You’d rather put your family through the stress of scrambling to take care of your daughter.”
So let me go on the defense here. While we’re fighting about life choices she *MADE*, I get shit thrown in my face about a disease I have no choice about? I get shit because I made an educated decision with the help of my SURGEON to not have surgery yet? Put my family through the stress of scrambling to take care of my daughter? Excuse me? I’ve been hospitalized 5 times in 7 years, not too bad. Once when I first got diagnosed, and the last time being for the new inflammation… which has absolutely nothing to do with the surgery I had discussed 2 years ago with my surgeon (again, she would know if she asked). Yes, I most likely inconvenienced my family, but you know what? That’s what family is there for. To take care of each other, especially when one is sick. This family member wouldn’t know about that, since she stepped in for a sleep over 3 times since I’ve been sick. That’s besides the point though.

That attempt to shame me for something I have no choice over is why we keep our mouths shut. I don’t say a whole lot about how I’m feeling, I’m most active online for awareness, and yet I’m still “whining” about how hard my Crohns is? I’m (not) sorry that I told someone about the multiple obstructions I’ve had, or the fistula I had, maybe I shouldn’t have (definitely should have) told someone that I’m in a lot of pain and not in the mood to go out the bar. I certainly should never (most definitely) have said “Hey family, I’m hospitalized because my disease has stopped responding to medication and I have to try a new drug.” I should have never said “Dad, I’m scared..” because obviously said family member thinks that’s whining.

THAT is exactly why I open my mouth. Why I post on my blog about my IBD, why I spread awareness in anyway I can! The shame that she attempted to pin on me for something completely out of my control and most definitely not my choice. No one with a Chronic Illness, whether it be IBD, Lupus, MS, Fibro or anything should have to feel alone, none of us should have to feel like we have to suffer in silence.

So you know what my fellow IBDers, my spoonies, and my friends. I’m going to go all high school on you for a second. FUCK the HATERS. Tell someone, tell someone you’re sick. Tell someone you hurt! Tell someone if you need support! You need it! You most definitely DESERVE IT. Anyone who ever tries to tell you that you complain too much, or whine, or are inconveniencing them, don’t deserve your time much less your love. No one has the right to shame you for how you feel or any medical decision you make regarding *your* disease. Stand up! SAY SOMETHING! No one will know unless we open our mouths.

We don’t have to suffer alone, and those who think we should, aren’t worth the breath they use to speak.  Like my 7 year old says “Mama, I love you no matter what, even if your sick or if your grumpy.”


Sidenote:  I wasn’t originally going to post direct quotes from the fight I had, but the more and more I thought about it, the more and more I wanted to write this blog.  What my family member said to me is the very embodiment of why many of us don’t complain when we feel bad or sick.  I want people out there to know that yes some people are shitty, but not everyone, and we all deserve support.  So please pass around, and more importantly, be there for each other.  We’ve got to be honest about our lives, and our pain, and in the meantime, in the face of people like I had to deal with earlier, we’ve got to be here to support each other.

Confidence in a Smile


Like pretty much everyone who exists, I have body issues that I try to ignore.  With Crohns (and Prednisone) my weight has yo-yo’ed quite a few times, with the biggest weight swings being upwards of 80lbs either way.  So I have plenty of issues with each size I’ve been in, and slowly as time goes on, I’m becoming more and more okay with the body I’m left with.

My smile though, it’s been less than perfect for years.  I’ve always had pretty crappy teeth.  I was that kid who had a dozen fillings before I even hit middle school.  I knew what a root canal was and had had teeth pulled before high school.  So yeah, crappy teeth.  It hasn’t been for lack of hygiene though.  I’ve always been very neurotic with brushing and flossing, but for some reason it doesn’t seem to make a difference.  I’m starting to guess it might be genetics, my Dad’s teeth aren’t much better than mine, and from what I hear, my Mom’s were pretty full of metal too.

A handful of years ago I had gotten a couple of cavities in between my front teeth.  I immediately sought out a dentist in my area to have them fixed.  I went in, was lectured and had them filled.  This is where it gets kind of hokey.  I went home that night and really inspected this lady’s work, it’s in the front of my mouth, so it was very visible.  I was already agitated because I could *feel* all the work she had just done and it was rough to my tongue.  I went and brushed my teeth, and realized that I couldn’t floss.  She had sealed my front teeth together.  I was appalled, it looked horrible.  My front two teeth looked like they were pretty much one solid tooth.  (Avoid Dental Dreams in Waukegan IL)

I went back to the dentist and asked her to fix it.  She pretty much just shrugged and told me that’s the way it was.  At that point, I was in a pretty big flare with Crohns (not to mention fresh out of a divorce) so money was pretty tight with everything going on.  I pretty much just resigned myself to a crappy smile and dealt with it while having every intention of going to get it done down the line.  It was just near impossible to spend money for vanity during that time, I was just happy they weren’t rotting anymore.

Fast forward a few years, other dental issues started popping up, but every time I had an appointment somewhere, I’d get sick and end up in the hospital.  I know in my case at least, with being chronically ill, teeth often get pushed to the end of the “to-do list”.  A couple of months ago, I made an appointment and stuck with it.  The dentist, while very nice, wanted to pull 7 teeth in back, add 7 crowns in front, and do several other procedures that were deemed necessary.  Okay okay okay, I figured, my teeth are horrible.  Why not?  They scheduled me for surgery, and I blindly trusted them… all the while waiting for a quote.  2 days before surgery, I got my final quote.  $18,000 total.  Yeah. You know, more than what my car is worth?  I just broke down, I didn’t have that kind of money sitting around, and they weren’t accepting payment plans for surgery and flat out refused to start any of the other basic work unless I had those 7 teeth pulled.  Good timing too, Crohns flare, annnnd back in the hospital I went anyway.

Thank god they over quoted me, thank god I cancelled that appointment.  (Future reference, avoid “Aria Dental” in Lindenhurst IL unless you want to be penniless and toothless)  I found a dentist through a friend and got a second opinion.  My quote?  Under $4,000:  Random fillings, 3 extractions, 2 crowns, 1 bridge, and ect.  I asked him why he wasn’t pulling more teeth, and was told there was no need, he could fix them and being that I’m only in my 20’s that should be any dentist’s goal is to keep my usable teeth.  The best part?  He accepts payment plans and will *not* bill me until it’s been run through my insurance.  The complete opposite of what Aria Dental did.

I met with him and explained that while there were other teeth that needed help, I really wanted my front teeth fixed, I had noted more decay.  I was honest, I told him it made me self conscious.  So I had my first appointment today, he immediately informed me that he wanted to extract one of the bad ones, to get that started and then work on my front teeth, purely so they could “make me smile”.  I walked in there nervous and scared, and walked out with perfectly repaired, shaped, and polished front teeth (and minus a far back molar).  He actually took the time to explain to me what he thought would be best, why he thought that, and what each appointment entails.  In a couple of weeks I’ll start a series of 3 appointments to get my teeth ready for and to build a bridge (I have two broken teeth in back, and you can almost kind of see one when I smile) so I can get full function back.

To say I almost hugged him is an understatement, the assistants (nurses?) were marveling at how much I was smiling when I left.  I almost hugged them when they REFUSED to accept payment until after they rant the insurance… no need for me to waste money I might not have too.

So at the end of the day I am thrilled, I’ve been popping in front of the mirror all day just to flash a smile.  They aren’t perfect (a little discolored, we’re going to talk about veneers down the line if I want) but it’s pretty damned close for me.  I’m just happy with the end result and the plans to fix the rest of my teeth.  It took several years and 3 different offices, but for the first time ever, I am happy with my smile.




(Sidenote:  While I have no problem putting Dental Dreams in Waukegan IL and Aria Dental in Lindenhurst IL on blast on a public forum, I haven’t listed my new dentist’s information for a reason.  I don’t want to have his name and or office come up with any kind of a negative review, even if it isn’t for his office.  Nor do I know if he’s okay with me posting his office name and such.  So I will keep that to myself unless you’d like to contact me for info.)


Everything You Ever Wanted to Know About Silence


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.



Having a hidden illness…. it sucks man. No one can see it and a lot of us suffer in silence.  The chronic part takes it to an extreme level.  In 5 more months, I will be going on my 7th year with Crohns Disease.  7 years is a long time, pretty much a couple of months after my diagnosis I felt like I shouldn’t be complaining anymore.  After I started treatment, I started gaining weight and no longer looked the “sick” part.  7 years is a long time to feel sick, long time to complain, so I just shut up.  It becomes tiring to explain over and over again that even though you can’t see what’s wrong, that I do in fact have a horrible disease.  The really shitty part? (Pun intended) This stupid disease will be with me for the rest of my years.

It is hard to voice pain with all of that.  The “you look fine” and the “oh its just a stomach ache” really beats you down after a while.  You just… keep quiet.

I’m really down as of the past few days. A good portion of that is due to my disease.  It’s almost Remicade time, and my symptoms are pretty bad.  On top of pain that makes it hard to walk, my joint pain has spread from my knees and hips to my shoulders.  The fatigue is extreme this time around and eating is again my enemy.  I know that (knock on wood) I will improve a bit after infusion, but it is getting old. 

What can I do?  Call off work?  I’m most definitely sick enough, but if I called off every time I wanted to cry due to pain…. I’d be unemployed.  Do I mope?  I try really hard not too.  Everyone tells me I’m a strong person, and besides, this is my life now.  Do I complain?  7 years is a long time, people get tired of listening to something they can’t understand. 

It’s just difficult sometimes is all..  I am frustrated and depressed.  I’m just tired.

Chronic Illness: Take a good look at your life


A lot of things change when you’re diagnosed with a chronic disease.  The emotions alone, the emotions that you have to endure when you find out that you have a disease that you will have to live with for the rest of your life, the emotions are devastating.  My life seemed to halt when I left the hospital for the first time with a brand new, shiny diagnosis.  I had already gotten over the shock I fell into when I finally had a cause for the weight just falling off of me, for the pain for the past year.  I walked out of that hospital, and life stopped.

Since that day, 5 years ago now, life started back up again.  I purchased a house, divorced and then finally started to settle down again.  I’ve been working the same job for almost 3 years now, life is stable, calm, and most definitely moving forward.  However, it’s not the same.  Since I was diagnosed I have moved on with life, but it seems like my Crohns Disease partially dictates what decisions I make.  I plan around and for my Crohns Disease, both in what I want to do tomorrow, and what I plan to do in 10 years.  Crohns Disease is part of my life, there for it has a place in my plans.

Life is a bit different now.  I plan around infusions that I need every 8 weeks, I make sure to fit in all of my appointments for each doctor, which trust me, I have quite the handful now.  It’s not really bad though, it’s just different.  Some parts that have changed?  My outlook, how I take care of myself.  I try my best to follow a healthier diet, I get some moderate exercise, and stay away from things that I know will set off my disease.  I’m working on cutting down smoking, eventually to quit, and I’m trying  my best to keep to a stress free life.  Without Crohns disease, I’m not sure if I’d work on my own happiness, work on keeping stress out of my home.  It takes a lot of work, and there’s a lot to be done.  I can’t say that I’d be as devoted to the whole idea if I was perfectly healthy.

As I’m getting older, moving forward in life, I’m starting to realize some things.  While having Crohns Disease isn’t the ideal way to live my life, it’s not the end.  I’m not stuck in my tracks, and by taking charge of my life, my body, I have a chance to make improvements.  So instead of dwelling about how “life stopped” because I got sick, I’m living life, enjoying myself, and striving to take care of myself and my life.  Chronic illness isn’t the end, just a new way of living.


Now if only the infusion nurse would get her butt over here and unhook me.  I am starving, and am looking forward to grabbing lunch.