Alice in Crohnsland: #Pain

#HAWMC Day 17: Lessons Learned the Hard Way

Now if ever there was a title for my autobiography, “Lessons Learned the Hard Way” woud most definitely be it! Ha! I am having mixed feelings about this topic. (Me? Having issues with the assigned prompt?! How shocking! Not!) I am to write and reflect about a lesson I’ve learned the hard way. A lesson. As in one. As if I’m the type of person that needs only one time to learn a lesson? Oh, and I’m supposed to write this during a 15 minute spree, without stopping?!

As I wrote in my HAWMC Day 2 post (which I’d like to mark as exhibit A and submit to the court, haha): “Do I do things the easy way? Of course not! Finding the most ridiculously difficult way to do something is my way. Does it complicate my life? Yes. Do I stress myself out? Of course!” Therefore, I am feeling frustrated with this topic. Not only for the previously stated reason, but also because it makes me feel guilty. And regretful. Those are the feelings that are currently arising. Which is then the root of my resistance and which is also why I must take a closer look at what is making me feel this way.

The lesson I learned the hard way is the one that resulted in where I find myself today. (Does this sentence make sense grammatically speaking? I don’t know, but I’m not going to stop my stream of consciousness). Ok, enough beating around the bush. Time to take the band aid off and expose the wound. Looking back, the greatest lesson I’ve learned is that I waited too long to have surgery for my Crohn’s. I was scared. That is all. Actually, that is more than enough reason to put something off. Fear is horrible, yet I had every reason to be afraid. I had never had surgery. And surgery for Crohn’s disease is a major surgery. In addition to that is the fact that there is no cure for Crohn’s disease YET. So the “resection” of the intestine is a surgical treatment which could lead to more surgeries in the future. And my fear was (and is) that I will require more surgeries until I end up losing most of my intestines!

So, lets take a trip back in time. The year is 2006. I am in SEVERE pain. I’ve never had a child, so I can’t say what being in labor pain is like, but, no, scratch that. Why compare. Pain is pain. And when it feels like your insides are tearing you apart, as if you swallowed glass and your body is trying to digest it, as if you are being stabbed from the inside out, THAT is what my abdominal pain felt like. And the pain only intensified *after* I’d eaten. Not to mention the other symptoms that directly arise from Crohns: bloating, diarrhea, dehydration. I felt as if my body was bulimic! It was as if someone had put laxatives in my food, for all the frequent bathroom trips I’d take. Here I’m probably crossing the TMI line, but hey, this is about health and about what I was going through. It’s important to describe the symptoms. No sooner would I eat (albeit very little) than I would get THE worst abdominal cramps EVER and have to RUN to the bathroom. I’d opt not to eat whilst at work so that going to the bathroom wouldn’t disrupt my work day. THAT is how bad it was. I lost SO much weight. I became unable to work and at that time my gastroenterologist sat me down and discussed furthering my treatment options and considering surgery, as I had a stricture in my terminal ileum, which was the culprit. How such a tiny narrowing in a small segment of my intestine could cause so much pain and disruption to my body, is frankly, quite fascinating! As luck would have it, my gastroenterologist at that time was a fellow and his attending consulted with him and upon further discussion they opted to try Remicade, which at that time was just becoming approved as treatment for Crohn’s patients (previously it was approved ony for patients with Rheumatoid Arthritis). Per medical literature and studies, Remicade had been shown to induce remission and in some patients even promote healing. You know I took that option versus surgery!

I was on Remicade for two years and while I didn’t get worse, I didn’t get better either. I was just, I don’t know, existing. I learned to live with the pain. HERE is my FIRST lesson. PAIN is NOT good! It is NOT to be ignored! WHAT the HELL was I thinking? Pain is like that pushy, acquaintance, who is ALWAYS there, who comes over, or calls you and will just NOT take the hint that you are NOT interested. Until you tell that person, hey, you are ANNOYING as HELL, I do NOT like you, leave ME the HELL ALONE. THAT is PAIN. Of course, PAIN is much worse. IT destroys. SO it’s more like a creepy psycho stalker. Yes, that is how I’d describe pain. It MUST be dealt with accordingly.

After two years of receiving Remicade infusions EVERY 6 weeks ( I’d go into the clinic on a Saturday or Sunday morning and hang out w/some very cool nurses, for 4 hrs as I got my infusion. I’d read but mostly sleep as the Benadryl would knock me out) it of course, lost its effect. Was the stricture still there? You betcha! (omg, did I actually just type that phrase?) Did my GI once more discuss other treatment options which included surgery. Yes. And this time around, I did have a surgical consult (though I had already made up my mind that I was NOT having surgery). I was beyond mortified at even entertaining the thought of having to undergo surgery. I did my homework though. I got a binder and got online, as well as went to the library and researched the different types of surgeries, took notes, and was prepared on the day of my surgery consult. The surgeon with whom I met was such a nice doctor, very warm, and very compassionate. I presented a case as to why I didn’t feel that I needed to have surgery. I asked him to show me my x-rays/cat-scans, etc, and to consider other treatment options. The surgeon actually agreed with me that having surgery at a young age wasn’t the best option and he sent me back to my GI doc with the recommendation that at that time I was not a good candidate for surgery.

*Record Scratch* Wait, what?! HERE is ANOTHER point in my life where I made a bad decision. WHAT the HELL was I thinking?! Let’s do the math here. It’s now been two years and countless meds/treatment. My stricture is the same. My symptoms are pretty much the same. I have a chance to get surgery yet I choose to prolong my pain and suffering, by taking meds? Which are NOT going to REVERSE the DAMAGE?! *head desk* So, I was put on Humira, in 2008, which is another biologic drug, in the same class as Remicade and which in 2008 was just getting approval as off-label use to treat patients with Crohn’s disease. And OF course, I said, SIGN me UP!! NO surgery? Hell yeah! I’ll take the Humira! Btw, the Humira is not like Remicade, in that whereas Remicade was an infusion, Humira is an injection which comes in a pen form. And is injected into the tummy (and which HURTS like a MOFO when it’s going in! It stings and usually brings me to the verge of tears. And I’m a pretty tough cookie. I can tolerate high levels of pain. And yet, Humira. Um. Hella hurts. HELLA. The painful/burning sensation felt when the Humira is going in doesn’t last long though. And after wards the injection site is sore for about two days, so it’s not too bad.)

Fast forward to the Spring of 2010, which is about 2 years after I’d been on Humira. Which of course, was not working. I was not only having my regular Crohn’s symptoms but feeling severly fatigued, anemic, my joints hurt, I was running fevers, wasn't eating well, losing lots of weight, unable to keep food in (ALL the while continuing to work, sometimes even up to 12 HOUR shifts!! WTF?! I know right?). I was weighing 96 lbs and I’m only 5’4 (I’m now 105 lbs). In short, yes, I was miserable. But did I admit it to anyone? Of course NOT. I was determined to avoid surgery at all costs. But this time, it was unavoidable. And I’m lucky I had the surgery when I did, because if I’d waited any longer, it may very well have killed me.

I will never forget the day after my first surgery. My surgeon told me that the portion of my intestine which was removed was damaged beyond repair. To the point where he was amazed that I was able to function because he could only begin to imagine how much pain I must have been in. During my hospitalization and the various procedures I underwent, my doctors were constantly drilling into my head (so to speak) the importance of my being in touch with my pain and REPORTING it, as opposed to TOLERATING my pain. I was lectured MANY times about my tendency to be stoic.

Of course there are all types of pain. The key is to learning to differentiate the everyday pain that comes with chronic illness/chronic pain, versus the get your ass to the hospital this is an emergency type pain.

THE greatest lesson that I’ve learned the HARD way is to PAY attention to the PAIN and NOT tolerate it. To DO something about it. And most importantly to LISTEN to myself and TRUST my body. Because throughout this whole ordeal, deep down inside, I KNEW something was wrong yet I ignored it. FOR FOUR freaking years!! I am NOT going to beat myself up much less have regret or guilt over this experience. Hell NO! I have been through enough! But in the future, should I need another surgery I will be so much more open to pursuing that option. And I sit here typing that sentence and find the irony in it because I am once again falling into my old behavior. I have been putting off a surgery. AGAIN. Out of FEAR. AGAIN. But THIS time, I am working through it, psychologically speaking. THIS time, I hope to be in a much stronger place mentally (I know I will be, of that I have NO doubt), to help me get over my fears of surgery. I need and want to have my take down surgery to reverse my stoma, and in that sense, both physically and symbolically, put that chapter of my past behind me (no pun intended, but quite fitting, haha).

Wow. I wrote WAY more than I was supposed to. Um. I lost track of time, so I did go over the 15 min. But I feel, at this very moment, both very raw and vulnerable, and also, at peace. This ended up being a cathartic exercise after all. I’ve been through a lot. Had lots of bumps along the way. Yet I’ve gained strength. But most importantly, I forgive myself.

@hipsteralice
April Blogger in Residency
Alice in Crohnsland for

http://www.whatthejules.com/april/325-hawmc-day-17-learned-the-hard-way

Alice in Crohnsland

Monday, May 7, 2012

down the rabbit hole of depression

Saturday, May 5, 2012

So Broken

#HAWMC Day 17: Lessons Learned the Hard Way

#HAWMC Day 17: Lessons Learned the Hard Way

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