Photo by Marvin Esteve on Unsplash

WARNING!!!

This is NOT a fun topic. It can even off-putting to some but over 3 million Americans are suffering from this horrid disease. I am one of them and what I’m about to describe for you is just a single perspective on a very complicated, life-changing, auto-immune disorder. After my diagnosis, the lack of public dialog on this issue became woefully obvious and I knew I needed to speak out. There is simply not enough awareness on this issue and I aim to change that. Please click the links all over the article to learn more about what you're reading. I’ve never gotten this personal publically but I think it’s worth it.

So let’s both be strong, me writing and you reading. Ready?

Major Abdominal Pain

I first start experiencing the symptoms an early October. It begins with my BM rate increasing and the introduction of blood/mucus to my stools, yet actual matter becomes almost non-existent.

It didn’t get any worse than that so I deal with it for a little over a month while trying to make intentional changes to my diet an order to alleviate the issue and return to normal. I figure it was something I ate or wasn’t eating enough of.

By Thanksgiving though, I start to experience the pain, muscle cramps, and fatigue. My brain is often in a fog and I want to take afternoon naps.

Again, I make adjustments to what I am eating, try to make morning stretching a habit again and work to counteract the effects with natural remedies. (vitamins, massage, etc)

To no avail…

Going into December, I start working from home more often. I have no strength, no energy, and no appetite. I show signs of significant weight loss. The contractions in my stomach muscles make toilet-time a hellish event and I get lightheaded whenever I stand up.

Merry Christmas to me…

Christmas morning finds me in bed, unable to move. My insurance starts on the 1st of the year, so I have to endure for 1 more week. Thankfully the insurance is through my partner so I don’t lose it when I lose my job. (Yes, really. Not blaming them, as they needed to fill the position but a hard reality for me nonetheless)

New Year, New Insurance!

(At this point, I’ll break down the timeline of events so far with short descriptions. I will update the timeline with new events. This is a live article)

Jan 3rd: I see my new PCP and tell her everything. She thinks it is diverticulitis due to lower left quadrant pain and my other described symptoms. Orders a slew of bloodwork and CT scan.

Jan 5th: CT Scan doesn’t really show much and bloodwork comes back normal. No bacteria, no virus, and average numbers all around. PCP rules out #diverticulitis and sends me to a local GI for a #colonoscopy.

Jan 14th: After a week of no-fiber, knot building in my belly and the torture of the prep at 2AM, I go in for my colonoscopy. I didn’t feel/remember a single thing after getting wheeled into the room. It’s NOT BAD PEOPLE! I wake up 30 mins later to the GI telling me she is diagnosing me with severe ulcerative colitis and I need an MRI to determine the severity (since she could only go a few inches without risk of damage due to the level of inflammation) Sends me home with a script for 4.8gm (4 tablets) of mesalamine daily and a mesalamine enema nightly.

Jan 15th: Follow up with PCP who says it’s all in the GIs hands now…

Jan 18th: Follow up phone-call with GI. MRI is scheduled for Feb 4th. Follow up with GI scheduled March 30th.

Jan 20th: I decide I want to be seen by the team at the Crohn’s & Colitis Center at Mass General Hospital so I called the GIs office to have them fax over my info and a request. They begrudgingly agree after 30mins of “negotiations”.

Jan 30th: I meet my new specialist who seems smart and confident. She says MRI is not going to show her what she needs and cancels it. Schedules new colonoscopy for Feb 12th and prescribes a 6-week tapered session of prednisone (starting at 40mg a day and reducing to 0.5mg) Tells me it won’t be easy but feels it is my best chance to come out swinging against the UC and knock it down a level fast. Wants me on as little pharmaceuticals as possible.

Feb 7th: Have a phone consultation with the anesthesiologist office regarding preparations for my colonoscopy. I was even sent a handy link with all the instructions. It describes everything I need to do including the Gavilyte prep, clear liquid diet for 24–36hrs prior, what I can’t eat in the week leading up to the procedure, and what to do the morning of.

Feb 12th: So I did the prep as described. Better than the first time but still a rough experience. Waking up at 2am, getting the 2nd half of the prep down by 4am, and getting to the office by 6am was the final gauntlet. I didn’t have to wait long to get started and before long I was getting wheeled into the procedure room. After a couple of last-minute questions from the anesthesiologist, I was off to sleep. I started waking up a short time later in the recovery area. Since I was given general anesthesia, it took a little longer than normal to get fully functional again but noticed that I was much more clear-minded than the last time (twilight sedation) I wasn’t able to see the Dr after due to some time conflicts in the dept that day but my paperwork said that the bottom 20cm of my colon including my rectum is… well, wrecked. Above 20cm and all the way to my ileum is good so that’s a plus but damn if the sphincter is where you want your issues to stem from. Follow-up on Feb 28

Feb 20th: Going to see the Dermatologist for the first time to address my possible Psoriasis (another autoimmune issue) as I look further into my overall medical condition.

Feb 28th: Follow-Up with GI Specialist at MGH followed by Royal Flush Fundraising event with Crohn’s & Colitis Foundation

My Body Tells Me NO!

So I keep going day by day.

Easier said than done…

Mornings are pure hell. My sphincter is on fire. My muscles ache constantly from dry-heaves of the butt. The concept of food is beyond frustrating. The pain is spreading to my right side. The urgency has put me in diapers. You get the picture. (sorry, you were warned)

The prednisone has caused my joints to ache, crippling pain in my neck from what would be moon face (if I had any fat left on my face), it makes me short-tempered, and just adds to the general exhaustion/weakness/brain fog.

Not trying to be all complaints though. I know some of you understand how it feels and don’t need to be told how crappy it is. (Trying to keep a sense of humor ok, lol)

I am too stubborn to let this keep me down for long. I have joined the Crohn’s & Colitis Foundation of New England. I look forward to being healthy enough to join TeamChallenge in Virginia or Falmouth this summer to raise awareness about #ulcertivecolitis. Follow me on my journey of recovery and fitness HERE. I am also part of a few online support communities. Having connections to people that personally understand and empathize with your life situation can make all the difference. For me, support is really so key to recovery.

I have some great friends that started a GoFundMe to help me pay for basic needs like my bills, meds, copays, etc. They also help me with transportation needs, running errands or completing chores. There are so many ways to help those in need that don’t involve money so never feel helpless.

Thank you for reading this. We need to have conversations about these things. It may be “dirty” to some and I get that but it is a life-altering and sometimes life-threatening disease. We don’t “look” sick and many people are in remission but that doesn’t change life for the millions being tormented inside.

If you also suffer from Ulcerative Colitis or Crohn’s, I would love to hear your story. Leave a comment or send a message. On Instagram @ericbeechwood

Sending love,

Eric