Dear friends, family, clients, colleagues, and whom it may concern:
Many of you haven’t seen or heard from me in a while. That’s because I’ve been completely out of commission for about a month and half, and actually spent the last week in the hospital.
I wanted to spill what’s been going on. Partially to thank some amazing people, partially to reduce the amount of times I need to tell/relive the story, and partially for simple catharsis.
As some of you may know, I was diagnosed with Ulcerative Colitis this past summer, following some really alarming changes to my digestive function. I won’t go into detail, ’cause ew, but for many months now I’ve been dealing with significant pain, alarming blood loss, major nutritional deficiencies, and anywhere from 5-25 bathroom trips per day.
UC is a life changing condition and there is no cure. Severity and impact can also vary greatly person to person. For a little perspective, this summer I weighed around 195 pounds. Today I weigh 143.
The diagnosis involved a trip to the ER, and an emergency sigmoidoscopy (without sedation I might add, which is quite an experience). I went home with a bunch of drugs to put in… a bunch of places.
The course of treatment takes quite a while, since you ideally want to be able to treat it with the least freaky drugs possible, so the past months have involved many prescriptions, blood tests… other tests… and much waiting.
During this time I had a full colonoscopy (with sedation this time, a much better experience). The findings were severe pancolitis, meaning my entire large intestine is affected… Severely.
There have been ups and downs over the months, though the ups have been infrequent and brief. Throughout this process, I’ve been on numerous rounds of a steroid called Prednisone, which is pretty freaky in itself, but is presumably responsible for those ups, and for keeping me out of the hospital as long as possible.
Just before the Christmas break things got particularly dicey, and I had to leave work – to which I have not yet returned.
On that note, I want to sincerely thank everyone at Top Draw for their compassion, understanding, and support throughout this whole ordeal, and especially over the past 6 weeks. Ken and Adriel, Top Draw’s owners and the guys who had to pick up most of my slack, have been such wonderful friends to me and I can’t put into words how much I appreciate the way they’ve enabled me to let go of the work stuff for this time so I can focus on getting better. I wish everyone could work at a place like Top Draw. Incidentally, we are hiring right now.
Where was I…
Everything came crashing down during the Christmas break, and my pain and bathroom dependence went through the roof. I went days on end without eating and became one with the couch, and not in a fun lazy Sunday movie watching sort of way.
When I was finally able to see my gastroenterologist (who is wonderful, by the way), we bumped up the steroids again and did another sigmoidoscopy (again without sedation). We did some further testing and discovered a C. Diff infection. C. Diff. is a bitch of a bacteria that tends to live in hospitals (where I’d been hanging out a lot) and latches on to people who have been on antibiotics, or people with Ulcerative Colitis. C. Diff. drastically exacerbates existing colitis, so that’s why things got so crazy.
Bad to worse
First line treatment for C. Diff. is an antibiotic called Flagyl, which I promptly started taking. Unfortunately things go from bad to much worse here. I had a severe neurological reaction to Flagyl, resulting in ears ringing, dizziness/nausea, tremors, distorted vision & sense of smell, crazy emotional distress … and the worst 3 weeks of my life. I felt like I was dying, and I was terrified that this might never go away. There was another ER trip in here, which didn’t really amount to anything.
Thankfully a few days after stopping the drug the symptoms started to subside, but of course the C. Diff. was still enjoying my tasty colon.
Next line is an antibiotic called Vancomicin. I was right freaked about taking another drug, but I didn’t have a reaction this time. Thank goodness. Unfortunately though, a week into the treatment things in my gut were not getting better. Au contraire.
Pack a bag
At this point the doc told me to pack a bag and head to the hospital for admittance. My colon was too far gone to keep trying to treat it as an outpatient and it was time to get the infection dealt with, and then get started on one of those aforementioned freaky drugs, Remicade (to the tune of 40 grand/year and with side effects like those pharmaceutical commercials we all laugh at).
Remicade is serious business
REMICADE is a medicine that affects your immune system. REMICADE can lower the ability of your immune system to fight infections. Serious infections have happened in patients receiving REMICADE. Some patients have died from these infections.
Some patients with Crohn’s disease or ulcerative colitis have developed Hepatosplenic T-cell Lymphoma, a rare type of cancer. Most of the patients were teenage or young adult males. This type of cancer results in death. All of these patients had received medicines known as azathioprine or 6-mercaptopurine together with REMICADE.
It’s a scary decision to make. At this point though, it’s that or lose my entire colon.
Well, after 7 days in the hospital, a shit load of steroids and other drugs, yet another scope, a lot of support and love from my wonderful fiancee Lindsey and my radical family unit (thanks mom, dad, Chris, Alysha, Alex, Debbie & Rheal), and my first Remicade infusion, I’m being discharged. The infusion was on Monday, and I’m cautiously optimistic about the results so far. Feeling slightly better isn’t going to get me my life back, but it’s a step in the right direction – and the first one of those in a long time.
I have a lot of holes in my arms, my legs are siezing up on the stairs, I look and smell pretty bad, I’m behind by miles on, like, everything, and I’m not quite sure what to do with myself… But I’m going home now.
Hoping the coming days continue to show improvement. I believe they will. They really ought to. I’d really like to keep my colon.
Thanks again to everyone for the love and support. I’m gonna go get better now.
9 thoughts on “Uh… Nick? (Where I’ve been the past while)”
Get well soon man, we all miss you at work!
Nick, so sorry you’re going through all this. Thanks for sharing your story. Hope you feel better!
Holy Macaroni, ‘Cuz! Had no idea you were going through all this. Hope things are on the upswing. Know more than I want to about Ulcerative Colitis, colons and surgeries such as ileostomies / colostomies. Prednisone is the suckiest of steroids as it helps one issue while causing others.
You are young, you have a GREAT support network and you have a (great) positive mind. Now to get your body to recognize this and respond accordingly. Hope you go into remission very soon and that the remission lasts FOREVER (it happens)!
I don’t know what to say Nick other than I’ve been down that road all my life. They finally removed 12 inches of my large intestine in I think 1989. I was told ulcerative colitis or IBS or even female problems for years. To even …it’s all in your head. I finally know that the different times it’s turned into petitinitus were very difficult and that last time it totally ruptured. After months of preparation they were able to remove a section of the large colon and finally for thd first time I felt almost human. It’s been a subsequent struggle of maintaining a delicate balance since related to diet and hydration and living with choices to keep others around me happy has been incredibly difficult at times. What they all can manage… I cannot. But I still do try to keep up sometimes. My attacker, instigator, nemesis is in so many hidden forms these days that I cringe trying to figure out where it will pop up next. A hundred years ago what would have been a minor issues has grown dissportionately because of genetic engineering of crops and modern farming practices. Both have contributed to for some … Near deadly options that we consume often without realizing the repercussions to our unsuspecting human bodies. I wish you a speedy recovery and hope that your doctors know a lot more than they did thirty years ago than when I got really sick! 12 were going to send me home from an emergency room complaint of a perforated colon. Thank goodness for the gastroenterologist that arrived and saw my herrendous condition and kept me there on IV for a week. That was April. He did subsequent testing that finally showed the diseased parts that no other testing during years of complaint had ever brought to light. I finally did think that maybe I was neurotic and the debilitating pain was only in my head. I waited til my birthday that September to have a successful bowel resection alleviate much of my pain concern. I still have to be very careful but am very grateful that st least I now know what I’m dealing with. Diverticulitis. (severe wheat etc allergy… Not celiac. Not the glutin! All of the wheat! The whole thing!!! Corn syrup solids which is an ingredient in almost everything that wheat isn’t in can have the same effect on your insides. Including perforation and organ damage
I am soooo sorry…. I understand to some degree. I too have struggled hard, but it sounds a lot more complicated in your case….have not gone the Remicade route..sort of puts things into proper perspective for me now….
Your mom and I re-connected just over a year ago….she is more special to me than I can say… more of a sister than a close cousin….making you a very, very precious part of my family, too.
I so long to hear that you are on the mend….and will be keeping you very close in heart ….and in prayer.
Nick-I’m a local guitarist who’s known your Dad for many years, and recently we’ve run into each other on/at gigs after at least 7-8 years! I’ve always admired your Dad’s professionalism and affable character; and it seems he’s passed on those qualities and others to his son.Your courage and honesty are inspiring-I wish you a speedy and complete recovery, and hope to meet you this year when you’ve recovered nicely! cheers Nick-prayers for your recovery!
Hey Nick, we miss you at the office. Glad you posted this, it’ll help a lot of people going through similar issues.
From Roberta Wells to Rene … Wow your Nicks story is so similar to my Jordy’s story. There is life after disgosis and remicade is a wonder drug. Here’s hoping his healing journey is positive. I tried to post by his blog but FB wouldn’t post it. Take care
Thanks for Sharing your Valuable information.
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