Tag Archives: anxiety

Anxiety, Achalasia, and Lynch Syndrome

Three years ago – while dealing with my cancer diagnosis – I was also diagnosed with achalasia. Essentially an esophagus disorder that causes difficulty swallowing either due to motility issues (food not going the right direction at the right times), stricture (tightening/narrowing of the esophagus), issues with the esophageal sphincters, or some combination of the three. The doctor who conducted my first barium swallow described it as someone squeezing the tube of toothpaste in the middle instead of from the end the way it should be done. 777789219

While waiting to go into surgery for my colon resection, I asked my surgeon – someone I’d grown to trust quite a bit in a short amount of time – if he thought I should try the balloon dilation or go ahead and have the Heller myotomy. The former is a procedure where a balloon is inflated in the esophagus, stretching it and (hopefully) widening the esophagus where it has tightened to allow food to pass more easily.  The latter is an overnight hospital visit and involves cutting the lower esophageal sphincter (LES). I didn’t like the sound of either.  He strongly recommended I start with the balloon.

I had the balloon dilation done while I was on leave from my colon surgery. It was similar to going in for an endoscopy, I was just a little more sore after. Once the soreness subsided, I felt some relief – food was going down more easily again, I was throwing up less. But the change only seemed to last for a month or two. I started getting the chest pains again, food was getting stuck more often. But after recovering from the resection surgery, the last thing I wanted was another hospital visit. I decided to put off surgery for as long as possible.

I’m a fairly self aware person.  People have actually picked on me for how self aware I am at times – I know where dang near every freckle is on my body, I am rarely blindsided by illness. Perhaps I’m a bit obsessive/compulsive. When I ask someone how they got a scratch and they don’t even realize they have one, it confuses me – I can count on one hand how many times I’ve found an injury (bruise, scrape, etc) and not known its origin. Maybe it’s a touch of paranoia – not sure how or when it started, but I’ve always been this way.

Therefore, when it came to my own body turning against me twice in one year, I had to ask myself what I could do differently.  I went to visit a psychiatrist to discuss the possibility that my swallowing issues were caused – or at the very least, exacerbated by – stress and anxiety. I started noticing triggers – both psychological and physical – and planned my meals around them or avoided them when possible. Ice cold water causes physical stress and makes me lock down, for example – drinking anything too cold with a meal is a bad idea most days. Certain voices put me on edge. I tend to internalize my stress.

The psychiatrist prescribed dissolvable Xanax tabs. She suggested I put one on my tongue just before a meal. The first time or two, I was amazed. I could feel myself relax and I could eat!  But she told me this was a temporary solution – she wouldn’t be writing me prescriptions for Xanax long term. I also didn’t want to take them long term, so that was not an issue to me.  Instead, I tried to focus on how it felt to really relax my body the way the tabs helped me to do.  I saved the tablets for really bad days – anxiety-ridden days when my chest would hurt so badly that  nothing else would do.

After the resection surgery, my doctor tested me for genetic mutations – polyps and colon cancer in your 20s and 30s tends to be a red flag for mutation. I tested positive for a mutation of the MSH6 gene – one of the 5 gene mutations associated with Lynch Syndrome.  I’ll talk more in depth on this in a future post, but for now I will say that it carries a 70+% (above the general population) increased risk for colon and uterine cancers.  I had a full hysterectomy in July 2015 to remove that cancer risk and now go for a yearly colonoscopy and biennial endoscopy.

I bring it up now because I’m having a rough week. I’ve been tossing my cookies almost daily. I wasn’t sure why at first, but with a little introspection, it hit me: Monday is my colonoscopy/endoscopy.  I’m thankful my doctor scheduled it pretty quickly and I didn’t have to feel it looming over my head for weeks on end. Every year I feel I’m emotionally holding my breath from the moment I schedule to the moment he comes in and tells me how it went.  Each year they’ve found polyps. Last year my doctor found them on the opposite end from where they’d been found previously. He mentioned that I may one day want to consider a colectomy (colon removal).  That’s something I can’t even fathom right now.

I’m full of hope this year. I see some positive changes on the horizon, but I can’t even attempt making them a reality until I have a clean bill of health in my hand for another year. So while I’m full of hope, I am also ridden with anxiety. The “What If”s pervade my quiet moments and I find myself subconsciously adopting a holding pattern in almost every aspect of my life – I have to push myself to remember that yearly testing has been nothing but beneficial for me so far. An ounce of prevention and all that…

As someone who is painfully self aware, I almost look forward to drinking that horrible liquid and then going in for my yearly medically induced nap. Not knowing scares me infinitely more.

Psych Visit #2

I’ve been a little lax on posting because I haven’t felt well most of the week. Yesterday, I finally called into work and went to see a doctor.  Everything checked out – just a bad case of allergy issues – so I got a shot of steroids and an Rx for antibiotics should things not improve.

The upside of being off yesterday was that yesterday was our follow up appointment with Dr. L, so I was able to go with Rick and Colin. Our appointment was at 12:45pm. Rick and I picked Colin up from school at noon and he wound up eating most of his lunch in the car on the way there.

Unfortunately, the good doctor was running about an hour behind, so we had some waiting to do.

Colin got anxious. He kept tightening his lips and looking around. He’d press his fingers on his throat and say he was thirsty. He wanted the TV turned off. He took about seven trips to the bathroom. Rick offered to take him outside for a bit, but Colin declined. He was very quiet…and incredibly nervous. He finished his juice box and wanted more to drink. The water fountain was back by the doctor’s office, so we told him he had to wait.  He stayed quiet, still looking around, wide-eyed, pressing his throat.  I’m wondering if he was having flashbacks to his butterscotch swallowing from the last visit.

The TV show that was on ended and a soap came on.  I could tell the voices on the show were starting to stress him out further.  At one point, someone on screen yelled at someone else and Colin’s eyes went wide and he rocked a bit.  I went to the receptionist and did something I rarely do – I asked her to change the channel.  If anyone should understand, a psychiatrist’s office should, right?  She glanced up and told me someone must have changed it because they never allow soaps. She quickly changed it to PBS.  I asked Colin if that was better.  “I just want it off, please,” he said, so politely.  I explained I couldn’t do that.  He asked a few more times over the rest of our wait, but never got upset.

After our hour of waiting – and a few more trips to the bathroom with Rick – we were called back.

Dr. L asked how the clonidine was working for us.  We explained that the .05mg dose wasn’t working, so we went up to the full .1mg dose after a couple of days and that seemed to help.  For a while, he was waking up earlier and earlier – as early as 4:30am!  But now that seems to have tapered off.  He’s waking up between 6-6:30am, which is wonderful.  I need that 15-20 minutes on my own in the AM.  Before, if I woke up earlier, so did he.  The slightest sound woke him.  He seems to sleep more deeply now. I can shower, let the dogs out, etc, and he doesn’t wake up.

As a result, we’ve been watching a lot more Animusic. Small price to pay!

Next up during our visit was discussion of his ADHD meds.  Rick and I both would like him on something longer lasting.  One of the biggest issues Colin faces are the highs and lows.  He’s on a roller coaster all day – he gets his morning pill…crashes…slowly amps back up until noon when he gets his afternoon dose….back down again…slowly amping back up.  Repeat. 

Therefore we discussed what we and the doc felt were the best options – Concerta or Adderall XR.  Concerta is essentially the same medicine he’s on now (a methylphenidate stimulant – i.e. Ritalin).  Adderall is an amphetamine stimulant.  Dr. L said that with the high dose of Ritalin Colin is already on, it may be a good idea to try a stronger drug like Adderall. He suggested we start with the short acting medication so that we can determine where he needs to be, dosage-wise, and then change over to the XR once we know how he reacts, how much he needs, etc.  We’re making the change this weekend – Saturday will be his first day on Adderall.  Fingers crossed. We’ll start with 5mg in the AM and then 5mg at noon.  If that doesn’t seem to be helping, we’re to give him a full 10mg in the AM and another 10mg at noon. The only real concern I have is that Dr. L said the crash from Adderall can be worse than that from Ritalin. I hope it’s not too traumatic.  I hope he reacts well and that this is a good change.  I’m nervous as hell.

As a side note, I think it’s interesting that Dr. L seems to possibly be on spectrum himself.  His mannerisms and the way he presents things… little things make me think there’s a high probability that he might be.  What really convinced me was yesterday during our session when Colin said, “What’s that noise?” 

I didn’t hear anything.

“It’s the speakers in the hallway playing music,” Dr. L answered.

I listened closer – oh!  I could hear it if I really concentrated!  But to Colin and Dr. L, I have a funny feeling it was the most annoying sound on earth.  He knew exactly what sound Colin meant.  Little moments like that make me feel like this is a good doctor for us. He’s not just someone who’s read a thousand books… he may very well be living through it as well.

Fingers crossed for this weekend.