Category Archives: Crohn's Disease/Illness

Reset.

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Some habits are hard to break.

No shit right?  I am such a creature of habit that I hurt my own head sometimes.  I’ve slowly but surely been breaking the bad ones, one at a time.  The more habits I destroy, the more confident I become.

Yes, I still smoke, I’m still working on that.  After 13 years, it’s a tough one.  So I’m slowly pushing at it and will eventually win.

In the meantime though I’ve given up quite a few.

I used to eat fast food at least once a week or once every other week.  I admit, it was easy to just stop at McDonalds after a long day of work and get a quick dinner for me and the short one.  I didn’t realize how often I was eating it until I actually sat down and looked at my checkbook register one day.  Yeaaaaah.  No.  So I stopped.  As a family we *maybe* buy fast food once every 6 weeks, if that.  Seriously, try it.  Whenever we do stop, even just junk food at a sit down restaurant, or a delivered lunch to work, I’m shocked at how much my body revolts afterwards.  I’ll feel sluggish, greasy, tired and slightly sick.  Every single time.

Once we cut that down, I started with more (in season) fresh veggies and fruits instead of canned and processed.  I’ve always prefered to eat fresh, but always felt exasperated in the Winter and Spring.  Well go figure, if you eat what is in season in your area or close by, it’s a lot easier.  Meals are a lot more fun to make now, and I feel better after I eat as well.  Since we incorporated more fresh veggies and fruits into our diets I have also noticed that Noodle complains less about her stomach and has an easier time with her moods as well.  Related?  I’d like to think so.

So one thing I’m working on that will shock the hell out of everyone and their mom is coffee.  No, no, no, NO.  I’ll never cut coffee completely out.  I love the taste of it, the comfort that I’ve attached to it over the last decade or so.  Coffee is soothing to me, helps me clear my head.  I enjoy it.  Not to mention the health benefits of a cup of good joe.  However, y’all know, left up to my own devices I can easily drink several pots a day.  As I’m getting older I’ve noticed the caffeine hits my body harder… and more importantly hits my crohns as well.  So I’ve been substituting tea in where I can.  Some with caffeine and some without.

With my Crohns flaring (again), I’ve started drinking more Lemon, Peppermint and Ginger Tea and to say I’ve noticed a difference is an understatement.  A bit of iced green tea is a good replacement for my iced coffee on lunch.  My stomach (while still trying to claw it’s way out) is much easier to manage, and the anti-inflammatories from the tea definitely seem to be helping me tolerate solid food quicker than usual.  The Guava-Ginger tea I picked up at the market, and the Ginger-Lemon I’ve been drinking for a couple of weeks calm down my stomach quickly.

There might be something to this natural crap.  *smirk*  Hey, anything’s worth a try after you live off of drugs that CAUSE CANCER.  Don’t get me wrong, I don’t believe that I’ll ever live med-free (for long anyway).  I have severe Crohns Disease, and it has me by my non-existent balls.  However, I’ve made it a personal goal to stay off the prednisone and 6mp because of what they did to my body the last time.  Maybe these last few strides to improve my lifestyle will give my body that last kick it needs to get into remission.  Who knows.

All I know is that regardless of whether or not I have surgery to remove the fistula/strictures, this lifestyle is here to stay.  I’ve got to give this body a fighting chance, so why not?

 

Living with Crohns Disease – Intestines for Sale

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I think one of the biggest things I hate about living with Crohns is the future.  When you have a chronic illness, sometimes it can flare up, for no fucking reason and kick your ass (figuratively and literally).  I hate not-knowing.  Especially lately.  When I was in a full-flare, not-knowing wasn’t bad.  The only thing I couldn’t predict was feeling better.  So when I had a random day, out of the norm, it was fabulous.  Now though, I’m practically in remission.  The normal symptoms of my disease are practically non-existent, except for the fistula.

Yes, I still have it.  It connects a loop of my intestine to my bladder and it makes for  a bad day.  I was planning on surgery but a multitude of things made the decision for me to put it off.  (And unfortunately followers, this decision is not up for debate.)  So basically as the decision goes, I am trying to stay as healthy as possible for as long as possible until I have to have surgery.  It’s a horrible plan, but at that point in time it was either choose to have the surgery and fuck everything else up, or put it off so life is more stable for a major surgery.

Anyway, on with my rambling.  So for the past few days, after months of being symptom free, I haven’t been feeling too well.  Fistula symptoms, upset stomach, diarrhea and nausea.  I’ve been taking it easy, sticking to teas and easy to digest foods instead of my coffee and grease.  Doesn’t seem to be too much change, but I’m still wary.  Having had two obstructions in the past, anytime symptoms mimic the early signs of obstruction I get worried.  So I’m taking it easy and hoping for the best yet still preparing for the dash to the hospital just in case.

Sometimes Crohns Disease seems to suck the life right out of me and not in the way you’d think.  On my bad days, I still strive to do everything I normally would do as well as things I want to do.  It’s the mental aspect that is different.  It turns my normally hectic mind into something more anxious and scary, almost more chaotic and full of worry.  I don’t want to end up sick, I hate being in the hospital, but at the same time, I long for all of this to be over with.

Normalcy.  It’s something I strive to have, but Crohns Disease messes it up.

Long Days :: Busy Mind

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Please excuse the rambling, it’s been a long day.

There’s some days where I get a little bit down about having Crohns Disease.  It drags on my head, sticks in the back of my mind.  I don’t even have to be feeling all that sick.  Sometimes all it takes is a little reminder, like visiting my GI doctor for a check up, or scheduling a Remicade appointment.  Of course there are the days where I feel sub-par, and the days where I flat out feel like road kill… and ironically, those days I don’t get down at all.  I spend those days focused on making it through, it’s not until I feel better that I get down about spending that time sick.

It’s difficult sometimes to think that this is a disease that I’ll have for the rest of my life, it’s even more difficult knowing that I could be in remission for years, and it could spring back up.  Just that alone makes me a tad depressed.  However, those days that I feel 100%, which thankfully are more and more now, I feel like I can continue to take on the world.  It takes the good days to remember that I will and have gotten through it.  Crohn’s Disease will not get me down.

What really kicks me in the ass is when I have a down right horrible Crohn’s day, or if I’m just particularly down, is coming home.  I’ll be driving home from work/school/the moon and be in near tears.  Yet, when I get home, open the door and shoo away the dogs, I feel better.  Now, once I get home I realize how lucky I am.  I am proud of what I’ve done for myself and for Noodle, and now that my house is more like my home it’s an example of it.  My home is an example of what I’ve been through and what I’ve overcome.  So I may not be over the moon happy, but knowing how far I’ve come despite having a chronic illness, it shakes more reality into my busy head.

So I may have Crohn’s Disease, but that’s part of who I am, and part of what’s made me strong.

Crohns Disease: what I’ve learned from it

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<3

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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.  :)

If it ain’t broke, don’t fix it, surgically remove it.

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Crohn’s is a dirty, dirty, low-blow throwing bitch.  Even worse, my mind is my own worst enemy sometimes when it comes to my treatment.  I have such a hard time accepting the different stages of treatment.  Hell, just page back through the entries, you’ll see the mental dilemmas I went through when I was considering going onto Humira.  (Like that even worked, totally lame!)

Now look at me!  I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone.  Add in dozens of antibiotics, muscle relaxers, corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List?  Surgery.  I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious sabotages me again).   Like I said, I’m still on Prednisone, I’m on my last week of tiering off.  So only a couple of weeks of hell left.  My current mental problem?  Now that I’m starting to feel normal again (starting being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery.  When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed.  I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own.  Obviously.  I am coming to terms with the fact that I NEED surgery.  That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission.  I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.

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.

Frustration and Coffee

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For some reason I’m really agitated today.  I’m not even sure why, there’s nothing I can pinpoint.  I’m just generally anxious and riled up, even though my “vacation” begins tonight.  I feel like I should be doing something, but I have no idea what.  There’s nothing that immediately needs my attention.  I don’t know.

It might just be the fall season.  Usually around Autumn I feel melancholy and I start getting the itch to make big changes.  Except for this year, I haven’t decided on any big changes.  I was thinking of school, but because of current student debt, it’ll have to wait.  Other than that?  I don’t know.  There’s no real changes I want to make to the house until the spring, there’s nothing major with my family.  I don’t know.

Ah well.

So it’s my vacation, or rather “stay-cation”.  I took some time off of work to save what’s left of my mental health.  I’m off of work until Tuesday morning.  I ended up squeezing in some medical crap, but for the most part, the next 5 days are going to be about taking care of me.  Tomorrow morning, I have my remicade infusion, but will be out of there around noon.  Friday, I have my surgical consult, but that shouldn’t take long at all.  Other than that, there’s no plans.

I’m excited, Noodle has school Thursday and Friday and then a 3 day weekend.  So Thursday and Friday are days to myself.  Saturday and Monday, Ryan is working, so it’s Noodle-Mama time.  Sunday?  Family Day.  Maybe I’ll take a tour through the thrift stores, I need winter clothes.  Maybe the forest preserve for writing and music? Maybe coffee with my girlfriends?  Maybe a walk downtown?  Who knows.  Either way, it’ll be nice.

Obviously, from my level of un-called for anxiety, I need this break.

Chronic Pain and Chronic Bitching

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Okay, so as most of you know I’m having a difficult time with my Crohn’s Disease these past few weeks.  So difficult in that which my body decided to plunk itself in the hospital with an obstruction.  I’m back at home now with a high dose of prednisone and am trucking along with a Crohn’s flare.

Sometimes it’s a little much to deal with, especially when you’re like me and don’t voice pain as much as you really should.  Sure people know when I don’t feel good, but beyond Twitter and The Boyfriend, I really don’t whine much.  I try not to.  I think what it comes down to is that when you’re in an immense amount of pain every day, you just kind of deal with it.  You tend to think that people don’t want to hear about your pain, since you’re in it every day.

So you just begin to live with it and bottle it up inside.

A friend of mine was DXed with Fibromyalgia not too long ago, and her and I have always been able to talk about our health issues together.  She was telling me about how her body hurts and when she was done, she said “you know, I don’t really talk about it with people much.  I’m afraid they’ll think I’m just whining.”  That really hit the nail on the head.   When some one complains about something long enough, you start to get annoyed.  It turns into whining.  So those of us with pain, immense pain and horrible symptoms eventually just shut our mouths.

A few months ago I made it a point to start saying when I really felt sick.  Like oh my god I’m dying sick.  Yet it’s hard to stick with.  For instance, today I was having major problems.  Immediately after my break at work, Crohn’s decided that it was time for me to live in the bathroom.  So I ran past my appointment and locked myself in.  My stomach felt like it was being ripped out for HOURS.  Yet when a coworker asked if I was okay, I just said “Oh, just my tummy hurting.  No worries.”  I had told her my stomach hurt bad yesterday, I didn’t want to continue on about it.

The downfall of bottling it up though can cost you someone else’s feelings.  When you spend your entire day pretending that your body isn’t on fire, and being quiet about it, you start losing the ability to be sympathetic for others.  I have to remind myself that even though   *I* can deal with pain and being sick quite well (hey, 5 years experience, haha) other’s can’t.  So while I can suffer through work with pneumonia, a cold will put others on their asses.  Hell, when The Boyfriend had the stomach flu yesterday, I had to remind myself he’s not used to.  That he felt like crap, that I wasn’t the only one.

Internalizing pain, stress and whatever else doesn’t help anyone.  The question is though, if you have a Chronic Illness or Chronic Pain, and you are honest about it, when is enough enough?  When is it whining?  When do people stop believing you?  Ah, the life of a patient.

 

 

 

The things I hate about you… and by you I mean Crohns.

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I feel a bit blah today.  I know why too, and I hate it.  Just like I did last time.  Prednisone.  The oh so wonderful steroid that helps so many of us Crohnies, kicks my ass.  Yes, it helps with the fistula and it helps push my disease closer to remission, but good god do the side effects suck.

I’m not sure what it is about this time, but the side effects have popped up in half the amount of time.  I’ve only been on a heavy dose of steroids for just over a week and I feel like I did three weeks into steroids last time.  My body aches, my joints sting, and my skin hurts, especially around my face and shoulders.  My brain is foggy too, which was a huge complaint of mine last time around.

The point of taking steroids this time is to get my body healthy enough for surgery, which I’m willing to do, but that doesn’t mean I’m not going to complain about it.  I feel hung over, even if I haven’t had a drink in longer than I can remember.  I feel blah.

It definitely doesn’t help that this week was very busy, especially the last half of the week.  We had two girls out, and I have been playing catch up on top of it after missing days for my hospital stay last week.  Combined with the extra hours I picked up to help out and these stupid drugs I’m on, I’m exhausted.

I got a lot done this week.  I feel like I’m caught up at work for the most part, and the house doesn’t look too shabby.  Bills are paid and errands have been run.  This week was hell, just like last week was, but at least it was productive.  This weekend looks much better though.  Ryan is going to be working a short day tomorrow, so that means lounging around the house until he gets off of work and then relaxing for the rest of the weekend, until my drive to clean and organize steps in anyway.

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As always though, I’ve been doing a lot of thinking, as I always do when I get sick.  It seems like when you’re down and out with your health, your true support network shows through.  As always, I am reminded how lucky I am to have such wonderful people in my life, and how happy they make me.

I’m lucky to have a job that I love and that accommodates me with my odd health schedule.  I may want to torch the place half the time, and bury my coworkers in the back building, but hey, who doesn’t?  I’m lucky to have coworkers who give a shit about how I feel and my overall health… even people I don’t work closely with every day have shown concern.  From truck drivers to stores, every day someone new pops up and asks how I’m feeling and how I’m doing back at work.

Of course I’m extremely lucky to have my parents.  My dad took Noodle for a couple of nights while I was in the hospital last week and spoiled her.  My sister apparently took her to the zoo, but I wouldn’t know first hand, I heard from my Dad.  I’m glad that I have such a lovely family who looks out for my kiddo and takes care of her so I can rest and heal.  My friends have played a huge role, from my “cafe-mom” friends to Katie and Ingrid (Girls I grew up with).  My neighbors even brought over a meal when I got home and have cut me some slack for my crap-mood.  Yet again, I’m reminded that family is not just blood.  Some times people who aren’t even related to you, step up more than blood does.

I am more than grateful for Ryan too.  When we first got together, I was concerned about how he’d react to my Crohns Disease.  I mean it sucks, some days I hurt too much to eat, or am feeling run down enough to just want to lay in bed.  (Granted, I’m still more active than half the people I know haha).  I worried what he’d think about my having to get Remicade Infusions, or when I’d end up in the hospital again (we actually started dating right after my last obstruction ~ cute note ~ he had offered to bring me a bag of books while I was in the hospital, it’s what peaked my interest to begin with. :)).  I was concerned that he wouldn’t be happy with a girl who was sick, and who will be sick until there is a cure found.

At this point though, I’m extremely glad I met him.  He has been by my side every step of the way.   He comes to damn near every doctor’s appointment, and has only missed one infusion (due to work).  He spoils me when I feel sick, and picks up the slack when I’m down.  When I realized it was time to go to the hospital, he came with, helped me with Noodle (ie: getting my Dad to come get her, packed up her and my stuff, and took care of her for the first 8 hours we were there.)  He listened to me bawl because of the pain, then again because of the heavy drugs (I don’t know, I’m a crier on pain meds).  He listened to the pros and cons brought to us by the surgeons, and he met my doctors.

Most importantly, he sat there and held my hand, only leaving when I made him.  I don’t know what I was so worried about.  Crohns Disease hasn’t made me a worse girlfriend, just like with being a mother, it just made me a little more unique.  Luckily for me, I found a man who loves me for who I am, even if my body is a bit off.  It’s nice to know that I am not going through this alone, that Noodle is not going through this alone.  Not only do we have the support of our family and friends but Ryan.  We’re very lucky.

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So worn down I feel today, but all in all I’m not in a horrible mood.  I’m am looking forward to spending time with my kid and the boyfriend this weekend, and just enjoying snuggling in in the morning.  My Crohns may be kicking my ass right now, but that’s not going to stop me from baking cookies with the kid, having a sci-fi marathon with the boyfriend, and enjoying my weekend.  So for now, I’m going to drink this last bit of coffee and wait for dinner to finish.  It smells awesome, and I’m sure since Noodle and Ryan cooked it, I’ll eat every bite.

I hope everyone has a great weekend and enjoys this first couple of days with the Autumn chill and rain.  Happy Friday.

Bliss: No blood draws at 2am

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I am aliiiiiiive.  Yup.  Not to mention at home.  I flipped a shit yesterday after having to deal with my “assigned” surgeon and his shit-head-know-it-all logic.  I spent the day doing light exercise, sneaking crackers and water to test my obstruction, and basically arguing with him and his team.  By about 4 pm I had it.  I called my nurses in, my doctors already knew I was going AMA, and told them I was leaving by 6:30 with or with out needed paperwork.

Basically what happened was, I have (had) an obstruction in my small intestine thanks to my Crohns Disease.  Second one in over a year.  Just like last year, it’s not a normal obstruction, just swelling around where the fistula is, blocking the way.  So in order to get the swelling down, I need to be on steroids and anti-biotics.  My GI doctor *is* on board with surgery, but also understands that I need to be at home with my daughter and back to work as soon as possible.  The Urologist and Head PA also understood the need to plan out surgery instead of going gung-ho.  So after chatting with all of them and ignoring surgeon boy I decided it was time to go.  All of them know that I don’t stay for observation.  I am planning and going back to have the resection done, but down the line, when I can arrange time off with work, and get everything taken care of house-wise.

I am feeling much better, that’s mostly because I’m at home though.  I always take my bedroom for granted.  Man I missed sleeping in my own bed and THROUGH the night, even if it was just for a couple of days.  I love my 3rd shift nurses and most of them remember me or get used to me quickly but man do I hate being woken up for blood draws and vitals.  So home and rest it is.  My plans for the weekend are to take it easy.  Heal.  And get spoiled by the boyfriend and kiddo.  I’m a lucky girl.

Happy weekend!