Ulcerative Colitis

A blog to chronicle and archive my adventures and education about Inflammatory Bowel Disease.

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So the entivyo caused some nasty side effects and cluster headaches so I stopped it in January. All was well using Mezavent until mid August then 💢flare again. I was scoped in October for the flare and started Salofalk and Mezavent. December 19 rolls around (and I’ve finally gotten into pain management.. but that’s another story) and I’ve just seen my GI and we decide in-patient IV Solumedrol. And here I am. Solumedrol isn’t fixing the proctitis and steroid enemas aren’t either. Met with surgeons today to start talking about the big step. Although my current flare isn’t severe enough for emergent surgery my history means elective is an option. (Or at least that’s what I know now) So here I sit in the General Hospital waiting to see what happens and hoping I’m home for Christmas. (And not sleeping… shakes 👊🏼 at Solumedrol) More updates soon.

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Entivyo

So I was officially accepted to the Early Access Program for Entivyo in Canada and started my induction last week. Im hopeful that this will help, and thankful that I’ve finally gotten access, but I have really started to feel the emotional and physical drain of these sorts of drugs. 

Its leaving me questioning the value of staying on them, or just seeing how my body handles being off drugs, and if that requires surgery.. then so be it. 

Being exhausted and achey all the time isn’t worth it at the moment. 

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We all know this too well.

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Running out of options

So Humira has proven (even with doubling the dose and a re-intake) to be not successful. But I still get all the nasty side effects of lethargy. I slept for four days after my initial intake dose of four syringes. It's looking like Entivyo is my last option. It launches in Canada mid May officially. For now salofalk suppositories are keeping me in check, and I'm getting off the prednisone. This would have been even harder without my amazing significant other.

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My kinda throne

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GED-0301 aka Mongersen is an oral drug with super promising results for Crohn's patients. We're talking 65% efficacy over placebo.

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Hospital visit - worst

So I just got out of the hospital. Whirlwind two days. My GI wasn't on call and the one that was decided to ignore my GIs requests and skip IV steroids and simply start me on a taper and boot me out. Not after performing a scope in my room with a busted endoscope that couldn't put enough air into my colon. Talk about pain. I think I passed out from the pain, since I never pass out from the drugs. Anyways, I see my regular GI Wednesday and we plan to set things straight. Frustrating not being treated by your own GI though. Anyone else had this?

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Mindfulness and mood tracking has always helped me but I never get in the habit of writing in a journal, or I forget how things were long after a specific event. 

The Royal Ottawa Hospital created an app that reminds you (if you want) to track you current mood (with notes as to why) then offers activities or actions to help or improve. You can then look back at a timeline and see your moods over time. 

I’ve been using the app for a while and although I may not update every day, it really helps me when I look back and gives me moments of reflection on my mental state. 

Healthy Minds App - http://healthymindsapp.ca/

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My morning breakfast. Hope everyone has it a little lighter (or at least is feeling a little better by taking so many pills)

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Oral prednisone and 5ASA enemas are sorta working. Progress has slowed and I've got hope that things will stay relatively under control till Entivyo hits the market. I may even avoid the hospital admission. Obviously I'm not getting ahead of myself here, but ive never has such a good response to oral steroids. Catching a flare early, and not being in denial has been really important this time around.

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Some familiar to anyone? A little lighter after the recent heavy posts.

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This should hit close to home for all of us.

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Hello There! let me start by saying I love your blog! Its very informative and helpful! I was wondering if you could help me out. I got diagnosed with the monster known as UC in may and have been very ill and in unbearable pain... Could you tell me what you have been on or know what works for pain? I am currently on narcotics but am wondering if any other drugs might work. Thanks in advance for any tips you may have!

Hey! Sorry for the late response. Been busy at work and going into another flare. Pain has been the Bain of my existence. After my last flare I ended up dependant, then addicted to narcotic pain meds. Getting help in a methadone clinic has made all the difference. It curbed my pain dramatically and also my un-prescribed painkiller use. I don't recommend it to anyone, but it helped me more then I could have ever expected.

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Anyone else had luck on Entivyo (Vedoliumab)?

It's coming to Canada soon and I'd love to hear of success or failure stores you may have. I'm optimistic, but not getting my hopes up.

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Flare again.

Just started my script for prednisone yesterday. Humira is toast for me. I'm patiently waiting on Entivyo (Vedoliumab). Let's hope is gets approved in Canada soon.

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Looks like the AGA just put a study together where both too little and too much sleep ended up putting us with Ulcerative Colitis into a flare. Maybe this explains the flares that happens when I am stressed and "run-down".