Where to go next

Hello lovely readers,

It has been a while now hasn’t it? How is everyone hanging on?

For a long time I was trying to figure out what direction to take this blog. I was finally feeling better and thought “well now what do people want to read?”. BUT I’m realizing that while yes, I love that my writing has helped a lot of other people, it wasn’t entirely the reason I started the blog. I also started this blog as a way to cope with my own journey as I navigated the highs and lows. I got so focused on writing content for views, that I forgot to just write for myself as well.

We here we are.

The last time I was on here, things were on the up and up, minus COVID. I mean COVID has thrown us ALL off now hasn’t it? I found the beginning of COVID filled with a lot of unknowns, which really spiked up my anxiety. Now, as things feel like they are slowly getting worse in terms of numbers, I am still feeling this niggling sensation of anxiety rear it’s head up every once and a while. I have not stepped foot in a mall, I have not attended any Halloween or fall festivities that were not outdoor, I have barely been in physical shops unless its for an errand. I have been to restaurants, but I think only 4 times since this all started and it’s a hard thing to process. It weirds me out a little that people have to serve me in a mask. I feel like this is just a sign that it’s not quite safe enough yet.

And I get it, people want life to go back to normal. People want to move forward and are feeling frustrated as things continue to change. It’s a super frustrating time and it’s something that has impacted people’s lives far more than just physically. But as someone who is chronically ill, I’m just going to keep staying in my lane and do the best that I can to protect myself and those around me who are also high risk.

But up until two weeks ago, things were going so well. I am in my last semester of my masters program (with little to no motivation to actually finish this class), I started a new job, things have been taking off with YEG Wellness Collective, and I was feeling fiiiiiine. And then the Thanksgiving long weekend came and I saw blood.

Now I don’t know about anyone else, but after not having blood for so long, the sight of it made my heart drop. And instead of being critical and thinking “hmm this isn’t a good sign” my brain thought “noooo this is just something you ate. Give it a day or two”- as if we haven’t already been down this rabbit hole. But I did it anyways and after two days it was getting worse. I was doing that thing where I ran to the washroom because it felt like I needed to go, even though I didn’t. I was getting that panicky feeling again anytime I was outside of a 20 meter radius of a washroom. I was getting some intense pains that were becoming more and more difficult to ignore. I was slowly going from 2 times a day to 5 times a day. And still I had hope that this was a fluke. BUT I did see my doctor.

Sure enough, I have proctitis. Basically inflammation in the last part of your colon, otherwise known as your rectum. This part has ALWAYS been the most difficult part for me to heal and was part of the reason I did not get full endoscopic remission during my last colonoscopy.

So I am now back on prednisone and sitting here wondering, why? What did I do wrong? And honestly? I can’t pin it to one thing. This itself is super frustrating, but I’m also coming to accept that maybe it’s just a combination of things. Lots of recent changes, some new stress, some new experimentation with food. Who knows. But I was getting myself into that bad cycle of stressing because I was unsure of why I was flaring up, which then triggers my disease more, and then makes me stress more that I’m feeling worse, which then triggers it more and well- you get the point. I had to stop. Literally just stop. Breathe. In and out.

I stopped and thought “what can I do to help myself?”. For one, take my steroids, which although are the devils tic tac, serve an important purpose for me and have made me feel a bit better. Two, choose lighter foods for the next bit and avoid trigger foods/new foods. Three, vitamins because cold and flu season is upon us and my immunesystem will be lowered. Four, book a therapy session.

This illness has seriously rocked my anxiety levels. I mean, I don’t think prior to this that I was someone who experienced dysfunctional stress. I mean I definitely have always experienced stressed, but it was to a functional level and often motivated me. Now, I feel it is always hindering me and literally affecting my body. Plus with winer coming, I can notice my anxiety peak a little more now because I was involved in two different car accidents in the winter time (one was not my fault and the other was going into a ditch after hitting black ice). So I thought now is better than never to practice what I preach. I think anyone can benefit from therapy, including a therapist! So I have my first appointment booked and we will see how it goes!

But for now, this is all I have. I am just a bundle of frustration and pain until things start to turn around physically. My life is basically work, school, sleep, and eat. Occasionally I see family and friends in a safe manner. It is a weird world out there and an even weirder world to navigate now as someone experiencing a chronic illness.

I hope you are all staying safe! Until next time.

B.

Published by shitsandgiggleswithb

A 20 something university graduate who was recently diagnosed with Ulcerative Colitis. Follow me and my journey with this chronic illness.

3 thoughts on “Where to go next

  1. Hey!
    For starters congrats on being nearly finished with your masters program!
    And then proctitis was always an issue for me, even when I felt well and there was no blood my rectum would show low-to-moderate inflammation on my colonoscopies. Using mesalamine enemas really helped me, and other times I’ve used Canasa (mesalamine suppositories) though during a flare the enemas made a much bigger difference.
    A lot of IBD sufferers–myself included–have higher incidences of flares during fall, which are attributed to the shift in weather. Every October I could count on inflammation–sometimes if I took it really easy and got extra sleep I could avoid a full-on flare, other times I had to take meds. And speaking if which–Entocort is a steroid for colitis that has far less side effects than Prednisone. I question any GI who goes right to Prednisone without first trying Entocort, mesalamine enemas, or steroid foam enemas–any of these 3 would be less destructive to your body than prednisone. I’m actually in a hormonal crisis right now due to prolonged use of high-dose Prednisone during my last flare in 2017 prior to my colectomy. My cortisol is very low, as are my T3/testosterone/estrogen/progesterone/DHEA and my insulin is high–I’m told the low cortisol is the crux of the issue. I’m taking supplements to and following a strict diet to see if they work to heal my poor battered adrenal glands. But I may have to take a bunch of replacement hormones. Good doctors recognize the perils of corticosteroid use and only use them as a last resort. They have essentially thrown me into premature menopause. So I want you to protect yourself as best you can by avoiding them by trying other options.
    XOXO,
    APK

    Like

    1. Hey! Thanks for this response 🙂 Its good to note that MANY do experience a flare in the fall and it’s something I think I will look more into! Also I should have better clarified, I didn’t jump straight into prednisone. I did do lab work to make sure it wasn’t anything else, and then we did my Cortiment first, but after a week I saw no changes and was feeling significantly worse. I also an intolerant or allergic to most enemas sadly! So thats greatly reduced my options there 😦 But I agree that it is important to know that these options are available and that Prednisone shouldn’t be your first line of defence! I hope you are doing okay!

      Liked by 1 person

      1. I’m glad to know your docs were not hasty in prescribing prednisone. Hope you’re feeling better! I’m very well, save for the current adrenal issue, which slows me down but certainly doesn’t stop me! XO

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