Sorry, this blog is somewhat neglected. We do tend to focus on our furkids over at thechubbyferret.net a bit much, I guess.
But, here’s a post for here! Click the link for a lovely wall of text.
As I may have mentioned a time or two on this blog in the distant past, I’ve got Crohn’s Disease. And, since I think everyone who reads this also knows me personally, you likely knew that already anyways.
What some of you may not know, is I’ve been having a really rough patch with it the past 6 months. Constant flare-ups, which for me result in intense, unmanageable pain (and missing days of work from being unable to drive while putting up with said pain), and a lot of time spent unable to eat anything solid. For a couple months, an increased exercise regiment seemed to be helping, and had the bonus of helping me drop over 20lbs. For those couple months, I felt like I had finally gotten a handle on my Crohn’s. Exercise, good sleep, and avoiding certain foods (goodbye forever, popcorn. I’ll miss you), combined with my Cimzia medication, seemed to have finally beaten my condition into remission.
And then the flares came back. With a vengeance. So badly I couldn’t even keep up with the exercise. I finally broke down and went to my gastroenterologist. He put me on budesonide for a month. It helped. A little. Went back, and this time he put me on prednisone. That helped more, as always, but came with the unenviable side effects (for me) of weight gain, emotional instability, and trouble sleeping. However…even on prednisone, my symptoms persisted. Which was highly unusual, prednisone had never before failed to eradicate them quickly.
Went back in, and was scheduled for a CT scan. One large payment later, scan is done. Had to wait over a week before I went back to doctor and heard the results. This was the end of March. The night before my appointment, I had dinner with friends, and Michele was out of town visiting her family. I ate too much of the delicious meatloaf. The next morning at the doctor, I was feeling it. A lot of pain, and nausea…and that was then compounded when the doctor informed me I had severe scarring in my intestines due to previous Crohn’s flares, but fortunately had no current inflammation thanks to the prednisone. My problems were coming from the scar tissue partially obstructing my intestines. And the only solution for that was surgery.
I stumbled home from that visit and collapsed into bed. Was there for 2 days before the pain and irritation subsided and I was able to go back to work (and that’s far from the first time this has happened; I’m good at noticing my flares in time to stop eating, but its not an exact science). Waited over a week before I finally got the call scheduling my consult with the surgeon. I’d chosen a surgeon in Charlotte versus one closer, because of the two options he gave me, the one in Charlotte had the potential to do the procedure laparoscopically. The closer one did not. It wasn’t a guarantee, but the chance of a minimally invasive procedure and correspondingly smaller recover time, was definitely appealing.
The consult was today, April 15th.
I’ve spent the interim weeks in a state of denial, for the most part. I could tell someone “I have to have surgery” and then move the conversation elsewhere, and be ok. However, if forced to actually confront the intellectual reality of having surgery, I handled things a bit poorly. And by poorly I mean full blown, fight-or-flight inducing primal terror. If I thought about it overly long, I’d be reduced to a mental wreck. So mostly, I didn’t think about it. Intellectually I knew it was silly to feel like that, but the primitive brain told my intellect where it could shove itself, and that was that.
Prior to my consult today, I spent 25min fighting off a full blown panic attack. I wanted to talk to the surgeon, to finally learn what I was in for and at least remove some of the unknowns (the unknowns are probably responsible for 2/3rds of my panic, despite some helpful posts from folks on reddit). But I was still terrified, and going in and talking with the surgeon was going to force me to confront the reality of someone putting me to sleep and then cutting me open and removing parts of me. And just typing that gave me goosebumps and made my hands shaky. So yeah. Panic attack. Regulating my breathing, closing my eyes, and just trying to force myself to chill.
And, frankly, it was all for nothing.
I waited at the doctor. And waited. And waited. Filling out the first-visit paperwork took no time at all. Practice, that. But I waited. Seemed a very busy little office, and he was the only doctor there. Finally was taken back to a room, and I could hear him talking to people all around me (the walls, they stop nothing!). And I waited some more. Got up and paced the small room. Fought off another panic attack with a side dish of claustrophobia. Waited some more. And finally, after almost an hour, the door opened. Oh, just a nurse. Letting me know he’ll be with me soon. Alright then.
Finally the doctor comes in, shakes my hand, and launches into a hyperactive stream of words. There was no conversation. Just him talking a lot. He’d ask questions, and cut me off before I came close to finishing answering them. He’d reviewed my CT scan, but he likes to be careful with Crohn’s patients. Doesn’t want to remove parts of their intestine without reason. Ok, that’s fine. I can respect that. But dude, I’m not eating. Every meal is a potential intestinal landmine, and I’m almost afraid to eat. And have been in that state for weeks.
Not to worry! While ignoring what I’m trying to say, he has a solution to offer. Kids today eat too many processed foods. So I’m to eat mostly organic foods. Oh, and I’m also to drink this special brand of flax seed oil, and to buy some expensive mail-order fish oil pills. Do all that for a month, then come back and we’ll see how you’re doing. And then he rushes out of the room before I can get a word in edgewise.
So…I wait a bit more. He finally comes back in with his ‘prescription’ (pictured here), and proceeds to explain that I’ll need to blend the flax seed oil with some almond milk or yogurt, else my body won’t absorb it. He keeps right on talking as I try to explain that I don’t eat any of those items, trying to get other suggestions. Here’s the fish oil brochure, I can use his clinic number to get a discount. Oh, and also, chamomile tea. It’s a natural anti-inflammatory, so be sure to drink it as needed to help keep your condition under control. You can sweeten it with honey. But only *organic* honey.
‘So do this stuff for a month, and then we’ll see how you’re feeling’, he says. ‘Any questions?’
Yeah…I CAN’T EAT. I’ve barely eaten anything solid for a month. I’ve been drinking ensures to just keep a minimum of calories and nutrition in my system. I’ve had so many servings of soupy mashed potatoes I almost never want spuds again. My original doc told me my CT scan showed no inflammation, and I’m still on the prednisone…so if I have no inflammation, and I’m still having my symptoms, how is a diet I can’t eat anyways going to help in any way?
In the end, after that brief moment of actually listening to me (interrupted by him rushing out to check my gall bladder on the CT, because having pain in my abdomen could also mean gall bladder issues, nevermind that the location was wrong), he then revises his original orders…lets just try all this for 2 weeks, then we’ll see how you’re feeling and maybe discuss surgery.
At this point, I just wanted escape. Actually, I wanted escape after the first spiel, when he left to get the scripts (oh, and also to see other patients and talk to 2 people on the phone. Did I mention the walls don’t stop anything?). I didn’t care anymore. I did not like this guy. I’d told Meabh as much during one of his absences from the room, and she wanted me to just leave as well. But some part of me still hoped to actually learn something about the surgery and what I might be in for. A vain hope as it turns out. Fighting to control the building rage and sense of betrayal, I left, and sat in my truck until I calmed down enough to drive.
Part of my rage was directed at myself. I knew I was overreacting, but I’d gone through all that angst and terror at the thought of surgery, and the consult had been something of a light at the end of the tunnel; at least after it was done, I’d be more educated and have some knowledge of what I faced, and that would let me analyze and conquer much of my fear. Instead, I got a surgeon who thinks he’s a dietician, advising I (not) eat some foods in lieu of other foods I (can’t) eat. Fat. Lot. Of. Help. That. Is.
So, I’m very likely going to be ignoring his orders, and calling my original doctor and asking for a second opinion. That dude was just a quack. Seriously. And in the meanwhile I’m left still with every meal a potential source of extreme pain and missed work, a ton of stress and worry over the state of my guts and the fact that a partial obstruction could very quickly turn life-threatening if it becomes a bit less partial, and a complete inability to conquer the still-present fears about surgery and what it will do to my insides.
This has not been a red-letter day. But at least my taxes are already done.