Crohns & Colitis Awareness Week (December 1-7th)

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More than a decade ago I was diagnosed with Crohns Disease. I had first gotten sick almost a year earlier, unfortunately my early doctors did not think to check for Crohns. It wasn’t until I had lost just under 100lbs and my life consisted of ERs, Fevers, Pain and my bed that I just happened to be in the right place at the right time.

I happened to go to a specific ER, where a group of GIs, one of which has devoted a significant portion of his life to studying IBD. It took one look at my chart and medical history for him to look at me and say “I think you have Crohns Disease”.

When I first became sick, I had only heard “Crohns Disease” once as a good friend of mine’s mother had it. I didn’t know that there were multiple options for treatment, I didn’t know the complications, I didn’t know anything. The following years were lonely. I found out another friend of mine had Ulcerative Colitis (same family of IBD) (who ended up helping me with my daughter way more than she had to prior to my diagnosis) and met another friend with Crohns. It was still odd talking about it.

There wasn’t medication commercials on the TV, Facebook wasn’t public yet (or popular until later) so instant support groups were out, I had no idea that so many people had the disease and were suffering right along side of me. To make it worse, my then husband and my family didn’t quite understand that there was so much more to it than a “bathroom disease”. No one around me understood the pain, urgency, fatigue, nor the side effects from my medications. I looked healthy enough, and at size 0, my friends were envious.

Check out Noodles face! Note: this is after I got sick, and before my diagnosis.

The first few years that I was diagnosed were the most lonely I had ever experienced. I had so much shame about a disease a couldn’t control. I just dealt with it as my disease stabilized. Having a bowel disease wasn’t something you talked about at parties, and I even tried to hide it from my close friends (online).

A couple of years later I had developed severe inflammation again, it started turning into scar tissue in my small intestine and colon. I learned what a bowel obstruction was, and after the first few, it became near constant. I was in and out of the hospital monthly.

It seemed like all there was to my life was Crohns. That was it. Now that Facebook was more popular I leaned heavily on my online friends and found some support groups. Furthermore I said “Fuck it” and started being vocal about what I was going through.


Everyone online was bombarded with what I was going through. I started TELLING people I couldn’t deal with the symptoms, I started EXPLAINING what Crohns Disease really was. I’d post pictures from the hospital or from my infusions. Showing people what Crohns Disease was.

Then I started hearing from people. I found out my then boyfriend’s niece has IBD. I had people acknowledging that even though people with IBD didn’t look sick, they were.

I had support and I tried to share it with whomever needed it.

I eventually had a bowel resection a few years ago after so many bowel obstructions I lost count. Even after being in the first 50 in IL to try Entyvio. Luckily, I have only had minor problems since then.

I am technically in remission. My last blood draw showed elevated levels of inflammation, so we’re just watching and waiting. So unfortunately I’ve become complacent with this disease (and also focused on dealing with some other issues, IST & POTs) as well as quiet.

However, I’ve learned that being open with the world about my Crohns served a purpose. People remembered. I have talked to just under 60 people in the last two years because of Crohns. People who have the same symptoms, were being diagnosed or just diagnosed, people in the hospital, family members of Crohns patients. People who just needed questions answered, who needed to vent, who needed someone to understand. I’ve talked with friends, their family members, friend’s friends, and strangers who found me through my social media platforms. I will never ever mind, I remember how hard it was in the beginning, I remember how horrifying and lonely it can be. Worst of all, I remember not knowing anything or what was going to happen. So I will always be up to talk.

It occurred to me last night, that THAT is a benefit of the awareness week. The more people know, the more people available to talk.. the more people who might recognize the symptoms in themselves and loved ones and get a diagnosis. The more people might not feel alone or overwhelmed with what they’re facing. The more people talking about it, the further we get.

So Happy Crohns & Colitis Awareness Week and remember to keep talking! It’s more than a bathroom disease!

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Normalcy.

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I was going to start off this blog in a general, all encompassing way. I was going to include everyone with a chronic illness in this post. However, I don’t know what’s in everyone’s head. Frankly, after trying to start writing the first few sentences, and deleting them about 5 times, I give up.

This entry is my thoughts. Purely me.

As some of you know, I’ve been having some problems lately. My heart isn’t acting up nearly as much as it had been, but when it does, it’s traumatic. My Crohn’s has been active too, with all the normal symptoms. From urgency, to extreme joint pain, and with today’s newest symptom, mouth ulcers.

It’s been a rough couple of weeks, which of course has been effecting my mood. It’s been hard to keep myself out of a rut. With the debilitating fatigue, it makes it all the more easy to just stay in bed.. why fight my body and depression. Of course, my anxiety is high as well. With missing the odd day almost 4 times a month, my bank account is hurting.. and with Christmas coming up, that’s scary.

To top that off, I found out my FMLA expired, and having never been on FMLA before, I didn’t know I was responsible for keeping track of when it expires. I figured that my company would notify me. Unfortunately that was not the case, and I randomly followed up on it and found it was expired. So there’s nothing better for anxiety than being in immense pain, living in the bathroom, and stressing about money.. than also having to worry about missing a day and losing your job because of it. Thankfully I was able to get an appointment with my chronic illness manager to renew my paperwork at the end of this next week. Still, it’s just one more thing I didn’t want to deal with.. talk about trying to choke back tears at work.

Anyways, what I’m getting at is, I’m at my.. wits end? It’s been very stressful, and I’ve been stuffing it in the back of my head, hoping for a better day, but I think it’s appropriate that I put this on paper/or in this case my blog, since it is Crohns and Colitis Awareness Week. This is one of the many facets of living with Crohns.. so why not share it?

So without giving away too much information about someone… well that’s not me.. a guy I know has a throat condition. He has a procedure scheduled coming up that will relieve some of the symptoms. Essentially a chance at pseudo-normalcy. Which is great, by all means, all of us with any kind of chronic condition deserve a break. It got me thinking though. Thoughts started tumbling through my head rather quickly. Admittedly I lost a lot of them because I didn’t think to write them down right away, but such is life.

I really don’t remember what “normal” is like anymore. I’ve been sick now, for almost 10 years. For a long time I struggled with the fact that the life I knew was gone. It took a long time to come to terms with it, honestly, it was mostly because as time went on, I started to forget what it was like.

In the years I’ve been sick, I’ve never achieved remission. Sure, I’ve had a group of months here or there that were “good” [Sidenote: not to be an ass, but “good” for most people with a chronic condition would send a healthy person running for the ER.] but I haven’t had a pain-free day, or a day without any symptoms.. period.

Thinking about normalcy almost.. almost upset me. It dug up some old feelings I’ve been avoiding for a while. Yet, I can thankfully remind myself of what I’ve gained from Crohns Disease as well as Inappropriate Sinus Tachycardia. I may have lost my old life, and I may not have much of a chance at normalcy any time soon, but I wouldn’t be me. I wouldn’t be who I am today, if I hadn’t been through what I have.

Through the last decade, I’ve learned to appreciate the “good” days, as well as the little things. I don’t know if I’d have appreciated a good cup of tea or a surprise phone call from a friend if I hadn’t been in a place where I felt like I had no one, and couldn’t even stomach water. I really doubt I’d appreciate the first warm spring day as much as if I hadn’t watched one from the other side of sealed hospital window.

Like tonight, I wouldn’t appreciate sitting on the couch with my boyfriend, watching stupid scifi shows.. if I hadn’t been completely alone and scared before.

So I guess the point of all of my rambling tonight, is that we, or I may not have “normal”. Even without normal though, there are good things. Good moments, good people, and memories to be made. Life isn’t over, life is just different. It may not be all fun and happiness, I’ll have bad days, but it’s important to remember that that’s not all there is.

 

In honor of Crohns and Colitis Week, today, I am going to embrace the good I do have. Things may not be normal, I may not have the life I used to have, but I do have life.

 

Awareness Week: Back with a Flare!

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It’s like awareness week… just the mere thought of Crohns Disease, woke the damned thing and it came back with a vengeance.  After a couple of months with few problems, I flare as soon as awareness week hits.  Yup, Crohns.  I’m freaking aware of your presence.  Jerk.

Ahh well.  I guess that’s the nature of the beast.  At least I made it through Thanksgiving with few other problems besides bloat and cramping.  I’m sure since I’m feeling a tad bit better today, it’ll flare back up right before Christmas.. then shortly after my birthday.  As always.

Crohns has taught me to look at life a bit differently over the years.  I don’t cancel much because of my disease, not any more at least.  I’m lucky to have a job where management understands that with chronic illness, it always comes back sometimes.  Hell, each time I got stuck in the hospital, I still had a job waiting for me when I came back.  I used to cancel a lot of plans and such when I started to get sick.  I still do on occasion, but mostly I just do them on my own time table.

For instance, we had plans to come up to my parents house this weekend, to relax and visit, but also to cut down a Christmas tree.  The boyfriend suggested that we stay home since I was feeling so rough.  Honestly, it was tempting to spend the weekend in bed, but I know if I take my time and don’t push too hard, I could make the trip.  I just move a bit slower, enjoy the slower things.  Instead of roaming on the ice, I sat by the fire.  Instead of running around outside, I enjoyed the apple cider from the crock pot (which apparently soothed my innards pretty good).

I guess my point is, is that almost anything is do-able in a flare, it’s just a matter on making yourself comfortable doing it.  There will always be some days that you are in far too much pain to do anything other than curl up in a ball, some days where you start designing your bedroom around the toilet.  Some days though, it’s worth taking a chance and doing what you want to do.

I’m glad I got to come up and relax away from traffic, wailing sirens, and the rush of normal life.  I’m glad I’m able to get a break.  It’s almost time to take the kids to get trees, so I’m off.  Hope everyone has a happy Sunday.