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

Standard

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.

Advertisements

Grown Up Stuff: Because I have nothing else to do.

Standard

Another dreary day here in the hospital.  Looks like it’s pretty damn depressing outside too, which frankly makes me feel a little bit better.  I always hate being locked away here when it’s gorgeous and sunny outside.  Here in the Midwest it sure seems like Spring/Summer are never going to arrive.  It’s the middle of may and we’ve only broke 70 degrees a handful of days, it’s not snowing which is a definite bonus, but not quite nice out either.  I’m pretty sure that it’s going to be a very mild summer.

Anyway, I am feeling quite a bit better.  I’m still moving a bit slow and am severely fatigued, but I’m willing to bet that that’s more due to the lack of food… the last solid food I ate was 6 days ago.  I’ve been able to have some liquids for the past two days, but the nurses are still working on getting a “general/soft diet” approved for me.  Wish me luck, my appetite is coming back and I’m starving!!  I certainly don’t feel like roadkill like I did earlier this week though, and I reluctantly have to give credit to the drug cocktail they have me on (no pain killers for more than a day!!) as much as I don’t like it.

So normally I refuse Prednisone as long as I can.  I hate that damned drugs and pretty much anyone with an autoimmune disease does.  It’s just a horrible, horrible drug… but it works.  It’s the quickest way to get out of a flare (which is perfect for me right now since it seems like it’s the new section of inflammation that’s actually causing me so many issues) and I need to be back at a functioning level as quickly as possible.  So back when I was still in the ER, they started the IV bag before I even had a chance to ask what it was, so back on Prednisone I go.  I’m looking forward to getting better… but adding moon-face, skin problems, skin pain and joint pain/swelling to the mix?  Oh, and I can’t forget my favorite side effect… Mood Swings!  Booyah.  In people who already have “mental issues” (I have an anxiety disorder) it brings it out a bit more.  *Sighs*  Oh well, I’ll just count down the days until I can get off of it.

Besides Prednisone, it looks like we’re almost 100% sure that I’m going to stop taking Remicade.  My GIs want to switch me to Cimzia, I’m not looking forward to having to fight tooth and nail to get my insurance to cover that, but like I said before, my doctors have already started that fight for me.  From what I understand, I’ll also be upping the dose for my 6mp as well and most likely be coming home with every Crohnie’s favorite antibiotics (just guess).  (Side-note: since Remicade/6mp are both classified as Chemotherapy Drugs now, I have to have a special nurse come and give me my meds… pretty freaking weird if you ask me.)  So hopefully with all of that (and I’m assuming I can discontinue the Entocort, since that was just us trying to avoid Prednisone) I can start getting back on track.

Whatever.  All I know is that I’m super antsy and the longer I stay here, the lower my mood slumps.  I’m missing my kiddo pretty bad too (even though it’s only been a day and a half since I last saw her), she’ll be coming up here for dinner tonight after school, so I’m excited for that.  Hopefully I can go home soon, I miss the boyfriend and the animals too.  *Sighs*  Back to surfing the internet, it’s almost time for me to harass the nurses for food again.  I already balanced my checkbook and paid all my bills… I ran out of stuff to do so I did the adult stuff that was on my list.  Blah.

Antibodies are Assholes

Standard

I am exhausted, I just started feeling a little teensy weensy bit like a human being again this evening.  I didn’t get any sleep last night, I spent the majority of the night up with the nurses trying to get blood drawn and IVs started.  I was so dehydrated (and my veins suck anyway) that as soon as the poor nurse would get a line in, my vein would blow.  They did start me on morphine, a small dose, and it didn’t even begin to cover some of the pain I was in.  I finally got my normal painkiller and now, almost 24 hour later, my brain can process thoughts correctly.  I was a hot mess this morning, it was obnoxious.

Obviously not a happy camper

Obviously not a happy camper

So, everyone and their mom has now looked at my cat scan.  It looks like we’re all on the same page now.  Looks like I have a partial obstruction, which is no surprise to anyone, but what has everyone’s eye is a very large stretch of *new* inflammation in my small intestine.  It’s drastically different then the scan I had in March if I understand correctly.  Anyway, so back in March, we had already had the idea that my Remicade Infusions might not be working anymore.  To try and prevent my body from creating antibodies to fight off the medicine, we had upped the dose and stuck me back on 6mp.  Looking at last night’s catscan, it doesn’t look like it did any good.  So this morning we sent off a blood test to see if my body had indeed made antibodies.  While waiting for that test to come back (couple days) we’re just going to go ahead and start looking into other meds.  I’m on high doses of antibiotics and steroids trying to get the inflammation down so I at least have a chance at a new med.

I’m definitely trying to do my best to hang in here and just have patience.  I was having a really hard time this morning, the pain was so immense and layering that on top of sleep deprivation, I was nothing but tears.  Now that I have pain relief, things should get a little better.  I’m looking forward to getting some (patchy – damn vital checks) sleep tonight.  We’ll see what these next few days hold.  Hopefully I won’t be here too long.

Home sweet home. Now where is my sleep?I

Standard

I am home.  I am glad to be home but I feel completely exhausted.  I got around 6 hours of sleep last night, almost interrupted and it feels like I haven’t slept since yesterday.  I was hoping that I had an appetite this morning, but nothing.  I thought about making some oatmeal or something easy to digest and just dealing with it… but the wave of nausea that came after that thought changed my mind.  I’ll try again later on and hopefully manage something so I can get some energy.  At lea st I know the obstruction is still clear though, I can keep down liquids and no pain directly from them.

I’m glad to be out of the hospital though, I was discharged yesterday afternoon after meeting with my surgeons and my GI.  Surgery is a no go for now, both surgeons feel like if I can continue to keep a handle on my disease barring a hospitalization here and there to help with a minor obstruction, that it’s not necessary to slice and dice now.  My GI (reluctantly) agreed and he and I discussed new medications and altering my normal ones.  The conversation wasn’t the most enjoyable, but it needed to be had, which I knew even before this last obstruction.

So since there is a new area of inflammation and the regular area doesn’t seem to be improving anymore, it looks like Remicade (my infusion I get every 8 weeks) is starting to not work.  Both of the GIs think that my body is building antibodies to the medication, just like it did for Humira.  So we added Entocort back to my med list, mostly because Prednisone had so many nasty effects for me and had started to do some damage, I didn’t seem to have such a hard time with Entocort.  In addition to that, I’ll also start taking 6mp again.  I’m not thrilled about that, mostly because again, side effects as well as the higher risk of Lymphoma (in additional to the small risk that Remicade carries).  That and the weekly blood draws to monitor me.  Ugh.  I’m not pleased but honestly Remicade had been working great (short of the fistula) and we don’t want to let that go.  The goal is to use Remicade as long as possible and to use the Entocort to bump me as close to “remission” as possible.  Then, eventually, when I absolutely need it, I’ll have a resection.

So I guess let’s hope for the best, and in the meantime, I’m going to go lay back down.  Crohns sucks.