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. 

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.

Once again, where to begin?

I guess I’ll start where I left off – that’s a good place, right?

We stopped the extra dose of Seroquel and that helped for a bit…but over the past few months, Colin’s mood continued to worsen.  He got into the habit of going to his room to break things when he got mad – usually his own toys, but still not a good habit!  We’ve continued with him going to play therapy every week – we alternate which brother goes with him – and that seems to be helping quite a bit with his verbalization and his relationship with both brothers.  (We’re getting less “I don’t know”s and more “I’m angry because ____.”)

A couple of weeks ago, we told Dr. L about the mood swings – Colin was often angry/sad at the drop of a hat – and Dr. L decided we should take him off the Clonidine and try Intuniv.  We started with 1mg/day for the first week, then up to 2mg/day after that.  As we eased into the Intuniv, he had us ease off the clonidine.  We stopped his morning and afternoon doses immediately and then eased off the bedtime dose. 

His mood improved within a couple of days – he stopped having meltdowns and seemed generally happy again.  His hyperactivity, however, was off the charts again.  After a full week on the 2mg of Intuniv, we called Dr. L and asked what he thought we should do as Colin wasn’t focusing at school and was very hyper.  He decided to up his Adderall XR to 30mg.  He hadn’t prior due to his weight, but considering he was on 100mg/day of Ritalin just last year, 30mg of Adderall didn’t sound quite so drastic.  (They do not make a 25mg of the XR or we would have tried that first.)

So far, things seem to be going well.  To recap, he’s on 30mg Addreall XR and 2mg Intuniv in the AM, then 50mg of Seroquel at night.  He’s still having some issues in the evening, but he’s doing pretty well the rest of the day – no wild mood swings, a LOT less anger…if anything, he’s a little too silly at times – I’ll take it!  He seems happy – that makes me happy.

 

And now… to explain what *I* have been up to the past few months.

Near the end of last year, I started having issues swallowing – food would get stuck on the way down and it was sometimes a bit painful, but mostly just annoying.  By March, I was tossing my cookies a few times/week and could not handle eating if there was even an ounce of stress – I’d taken to eating dinner after the kids were in bed most nights.

Mid-March, I accepted the fact that I couldn’t put this off any longer.  I wasn’t sure what the issue was, I just knew I was tired of this esophagus mess, so I called my GP.  He suggested I go see a gastroenterologist. I actually had one in mind because in 2005 I had some issues and wound up getting a colonoscopy where they found a polyp (benign) and removed it.  I’d been instructed to come back in 5 years…but time had gotten away from me and I just never went back.

First thing Dr. S said when he saw me was, “You’re 3 years late for your colonoscopy, you know that, right?”  Yes, yes…I told him we’d fit that in with whatever was involved in fixing my swallowing issues.

After a few inconclusive tests on my esophagus, I went for my colonoscopy.  They found 2 polyps this time.  One was malignant.  Suddenly I went from having throat issues…to being diagnosed with colon cancer at the ripe old age of 33. 

I went for another throat test that week…and a CT scan of my abdomen.  The CT scan came back showing no other signs of cancer, thankfully.  The throat test concluded that I have achalasia – essentially, the sphincter that connects my esophagus and stomach malfunctions.  (When you swallow, it’s supposed to open. Mine only opens when it feels like it!)  But that would have to wait – I was meeting with my colorectal surgeon the following week.

When sharing my medical news with family, I found out my great-grandmother (paternal) had colon cancer when she was a little older than I am now. She had surgery and no further issues – lived to the ripe old age of 98!  My grandmother also has polyps often, but none have become cancerous.

The things we don’t talk about!  No one discusses medical history that isn’t life-threatening, do they!?

I had surgery in April and spent the following 6 weeks in recovery at home. (Gee, Sara – you couldn’t throw together a blog entry during those 6 weeks??  No, apparently I couldn’t! lol)

On the 4th week, I went for an endoscopy with balloon dilation – one of the methods for treating achalasia.  The other option was surgery (overnight stay at the hospital), but I just couldn’t stomach the idea of spending any more time in the hospital at that point, plus my colon surgeon had recommended that I try balloon dilation first.

Thankfully, the first round of dilation seems to have helped about 75%, I’d say.  I’ve only had to vomit twice since the procedure, though I do sometimes feel food get stuck…at least now it almost always goes down.  I’ve been told that I’ll likely have to go back and have the dilation done again in the future, but I’m good for now at least! (The procedure essentially tears the muscle.)

My pathology report came back clear as well, by the way – they removed 19 lymph nodes from around the area where the tumor was and all came back showing no signs of cancer.  Yay!  I’m still waiting on my genetic testing results to come back, but otherwise I can stop thinking about all of this for the next year (I will be back for my follow up colonoscopy next year!!).

As you can see, it’s been a pretty crazy past few months for us.  I’m back at work now and the kids are enjoying their last week of school. I can’t believe Summer Break is almost here!  We were able to push Colin’s week at camp off until late July (he was supposed to go next week originally) so that I’ll have vacation time accrued again by then.  We’re hoping to take Ryan and Rob to CO for the week – a “normal” family road trip, if you will.  I want them to get to experience things Rick and I did as kids and that’s not always possible with Colin.  My mom is local and told us not to worry – she is listed as an emergency contact at the camp and can be there ASAP if anything should go wrong.

 

So that’s me.  Now I just need to find time to read through everyone else’s blog posts!  I’m quite far behind. I’ve checked in on a couple of you here and there, but not as often as I should have.  I spent the first 4 weeks of my recovery sleeping, more or less!

Hope you’re all doing well!