Thursday, December 11, 2014

After the bomb drops

Where do I begin?

I'm devastated. That's the biggest understatement of the century.

Gastroenterologists really need to develop a different way of breaking bad news, other than waking you up out of sedation or anesthesia and saying "hey, you have Crohn's now".

Yes, you read that right. Not only do I have Ulcerative Colitis...now I have Crohn's. For those of you who don't know, Ulcerative Colitis is an inflammatory auto-immune disease that attacks your large intestine. Crohn's is the same thing, except it's in the small intestine. It has progressed. Seeing that ... I'm still in shock. How? When? WHY??!!

I am coping with this news in the same fashion any person goes through a grieving process. My initial reaction is shock. How can this be?? I literally didn't even THINK about Crohn's being a possibility. These were my thoughts going in: my UC has remained the same severity, my UC is worse, my UC is better. NEVER did I think they would discover Crohn's. I have wracked my brain in the past week thinking how this could have happened. Was it because I stopped doing my Remicade infusions? Well, it's possible it may have progressed while off medication, but it's also possible my disease was progressing unbeknownst to me over the past three years that we haven't gone in and taken a look at my innards. It's possible that stopping the meds made it progress faster, but it's also possible that it had already progressed this far while I was still on the meds. We just don't know and won't know. I have to go in to the GI in January. At that point, we'll schedule a CT Scan to get a better look at my small intestines and I'll probably swallow a mini camera so it can take pics of my small intestines, since he was only able to go about 4 inches in. Yeah, that's another thing. He could only go into the small intestines 4 inches, so WHO KNOWS how far that SOB goes ... (At this point I am taking a deep breath so I don't scream and throw my computer).

This brings me to phase two of my grieving process (which is a prelude to phase 3 where I want to throw my computer through a wall). Sadness. Extreme sadness. Disappointing, debilitating, heart wrenching sadness. As the explosion of shock started to wear off, it filled back in with this raw emotion. I cried a lot right after the procedure. I just laid there and sobbed. Travis kind of sat there helpless and my nurse tried to be optimistic. I didn't want to hear optimism. I didn't want to hear what they had just told me. When I was discharged, we went out for breakfast (I hadn't eaten in 40 hours!!) and I cried over my food. Then my brother, Jason, called me. Mom must have turned on her lighthouse (aka sent a mass text). Jason was always the most level-headed of my siblings. I think it comes with the oldest sibling territory. Somebody's gotta keep things under control! He usually will show up in a time of crisis with reassuring words. This is a weird analogy but for you nerds out there, I think of it this way: I'm Percy Jackson, a demi-god, and he's Poseidon (my dad). When Percy is in the thick of something really difficult, Poseidon appears and makes things seem better, by offering a nugget of wisdom. You feel somewhat uplifted, no matter how bleak the situation. He's admired, respected, and somewhat absent (my Poseidon lives in Canada... but he might as well live under the sea for how much we see each other). People mean well, I've learned. And those close to me know that right now, I need to cry and just not say anything... and they just need to listen... or be there and not pester me for more information. Which is partially why I've been silent mostly this past week processing information in my head, because I don't want tumult of inquiries, when I don't know how to answer them. So I you've reached out to me and I haven't responded, please don't take it personally.

It makes me angry that I don't have the answers. It makes me angry that I can't cure this. I'm pissed I have to suffer from this disease. I'm pissed that all my efforts seem in vain. I'm furious that I can't control the progression of this disease. I am sort of see-sawing between sadness and anger right now. I have moments of hopelessness and sadness over this new diagnosis. Then I get really effing pissed. I'm livid. Why did this have to happen to me? Why are my intestines being so mean to me when I've only been good to them? I don't eat wheat, I eat limited dairy, very little sugar, no processed foods, I try to eat organic. I run, do yoga, try to get adequate rest. It all seems for naught. All my vigilance and discipline and research and commitment. It seems almost empty now. I'm so effing pissed.

And I'm also currently in a flare. The first one I've had in about 3.5 years. I don't really want to talk much about that.

This isn't really the best time of the year for me to be so angry so I am mentally challenging myself to remember these positive things:
1) My diet and exercise regime have actually made me a better person, largely controlled my symptoms, gave me daily goals, more energy and a killer bod ;)
2) The only good news I received last week after my colonoscopy is that my Ulcerative Colitis actually looked much better than the last colonoscopy I had done. That truly is wonderful news. I was pleased to hear that.
3) I have a positive/cup half full/supportive husband. And a rockstar family. And a cute fat ginger toddler.

What I'm processing and pondering:
1) Doc wants me back on meds. Questions are... will medicine stop or significantly slow down the progression of my disease? or simply control symptoms?
2) What other options are there than biologics? Biologics suppress your immune system and increase your risk for cancer, in addition to the laundry list of side effects I had the pleasure of experiencing already.
3) If you dare suggest I get back on prednisone, I will strangle you. (that's just a statement, not a question, but I wanted to put it out there....#fuhgetaboutit)
4) How long do I have before I am completely encompassed in this disease and have to lose some of my intestines? Or can that be avoided entirely? Which brings me to
5) Kill me before I have to get a colostomy bag.
6) I hope this isn't hereditary.