OT: Ever survived a health crisis?

mr.rob said...
When I refer to health crisis I don't mean your typical disease/illness you already live with but a sudden turn of events that led to a debilitating turn in your health. We could say a crisis is constituted by being scared, uncertain of recovery, incapacited (or nearly), and experiencing pain/suffering that needs relief ASAP.

My typical disease/illness that I already live with is in itself debilitating and includes all of the above things in your list.

My UC was a daily health crisis, but I did get an infection that caused me to end up in the ICU for weeks fighting for my life with septic shock. That was a real crisis. It was caused by UC and immune-suppressing medication. If you look at the warnings on a lot of these drugs you will see that life-threatening infections are possible. Mine was in my lungs and it caused a lot of my organs to shut down. I had to be on a ventilator. It took a long time to recover... recovery went from literally having to get my legs strong again - they were so weak from laying there to having to wean off the ventilator, to getting off the medication, to seizures, to hoping my UC didn't come back with a vengeance (which it did - fortunately I had surgery and it's no longer a cornerstone of my existence)

notsosicklygirl said...
My UC was a daily health crisis, but I did get an infection that caused me to end up in the ICU for weeks fighting for my life with septic shock.

Wow jeez that is scary. I'm glad you made it through the other end OK.

notsosicklygirl said...
It was caused by UC and immune-suppressing medication. If you look at the warnings on a lot of these drugs you will see that life-threatening infections are possible.

Ya! you always hear that warning on drug commercials as their skiing barefooted with a huge smile plastered on their face... ahhh if only it were that easy.

So you were on meds for UC and meds caused immune suppression which led to a life threatening lung infection. Wow. So if you did it over again would it have been possible to avoid? A different medication maybe or was it somewhat inevitable?

Thank you for sharing your story NSSG! This is a valuable data point to add to my mental stats (it seems bad reactions or responses from meds is the leading cause of sending ppl into a health crisis from my current stats)

mr.rob said...
...(it seems bad reactions or responses from meds is the leading cause of sending ppl into a health crisis from my current stats)

and this is why the plural of anecdote is not data. It is very hard to work for a few stories, and I doubt it is ever valid to conclude that in general ned reaction is the cause. That is a logical fallacy.

It may be fair to say that some sudden change in health and/or management of a chronic condition is precipitated by some reaction to meds/treatment. It is likely useful to explore how people are affected in these particular circumstances. I mean, when treatment backfires makes it hard to trust or be brave about treatment. This may be an additional psychological burden that influences how the crisis is navigated, and how future decisions (for good or bad) are made.

My advice is not to pollute the useful conditions you might examine with overgeneralizations or trying to force some conclusion onto the information.

good luck

This is a good line: "this is why the plural of anecdote is not data" Did you coin this, DB? I like it a lot and might quote it.

NSSG that sounds really scary. I just read this article about out come of surgery. It is not related to this topic but related to biologic so thought it should be OK to post here.

https://www.mdedge.com/gihepnews/article/117675/colon-and-rectal/era-infliximab-ulcerative-colitis-surgical-outcomes-worsen

iPoop said...
Mr Rob, do you have UC? This is a support form for Ulcerative Colitis patients to help each other out. This is most certainly an off-topic post and should begin with "OT:

iPoop, no I'm actually a chronic fatigue syndrome patient. I wanted to poll some different conditions to hear the experiences of patients in different situations and get a broader perspective. Additionally, I figured it might be beneficial for other ulcerative colitis patients to read about the stories that other UC patients in their situation have gone through and survived.

Admittedly I'm not overly familiar with the culture here on healing well just yet so forgive me if each condition it's supposed to stick strictly to their own board.

Yeah I agree with you with regards to genetics susceptibilities and drugs. I'm not anti drug by any means, but there are certainly bad situations that could easily have been avoided. I think it goes without saying it is important to play an active role in your Healthcare, to be knowledgeable in your own condition, facilitate discussion with your doctor rather than blindly taking orders from them, and getting a second opinion if you have doubt. At the end of the day I think we all know from spending so much time navigating the Healthcare landscape that nobody cares more about the outcomes of our health than ourselves. I'm just trying to spot any low hanging fruit to highlight some basic principles to prevent any easily avoidable Health crises.

DBwithUC said...
and this is why the plural of anecdote is not data.... My advice is not to pollute the useful conditions you might examine with overgeneralizations or trying to force some conclusion onto the information.

DB, this is a very valid point I'm glad you brought that up. Yes the quote from my post that you point out is very black and white. I should have been more careful to have written "quite a few people I've polled experienced a Health crisis due to a bad reaction to a medication".

The article that I'm writing is about how to survive an Health crisis. It will mostly talk about mindsets and practical considerations that helped me for anyone going through a stressful and scary Health crisis. But as I was researching other people's experiences I found quite a few people (not everyone but some) could have easily avoided their Health crisis. I thought it would be valuable to point out any easily avoidable mistakes to share with others.

The way I would word it in my article would be along the lines of "take this with a grain of salt but I spoke to X number of people that experienced a health crisis along their health Journey and out of X number Y number could have easily been prevented by doing A, B, and C thing. Perhaps this could help you avoid misstep of your own."

Fair enough? I definitely like to hear your thoughts as the last thing the health scene needs is more Dogma or overgeneralization. I may or may not include this section.

notsosicklygirl said...
mr rob, what sort of story are you writing and where will you publish it?

It's just an article how to survive a Health crisis, discussing practical mindsets and considerations for getting through a tough time. I'll publish it on thefunctionalpatient.com (* note there is no content up on there yet I've got an article queue of about 20 articles and once they are all finished I'll begin releasing them 1 per week soon)

poopydoop said...
I think the thing is (and what i was alluding to in my original post) is that UC in itself is often a health crisis during times of flare-up. It's not like it's a bit annoying but you take some drugs to keep it at bay. Flare-ups can be debilitating and scary (involving hospitalisation with iv drugs). Many people have to have surgery in order to stay alive. My first flare up came suddenly from nowhere and is the most sick and weak i have ever experienced. The pain was extreme and any kind of physical exertion caused fever and dizziness. I got weak because food just passed through me, combined with blood loss 20 times a day. And so I am a little bit over-sensitive if the severity of UC is minimised by people who have no experience of it. (That is a personal trigger after years of people in my real world not taking my illness seriously)

Wow that's very interesting insight into the condition that you all face here. I knew that ulcerative colitis can be a very debilitating and painful disease but I did not realize the severity of flare-ups.

Wasn't discounting the severity of your disease, in fact one of my favorite Heroes that succeeded despite chronic illness was John F Kennedy who I know suffered from ulcerative colitis. Reading bits and pieces of his biography regarding his disease sounded really brutal and I can't imagine how hard it would be.

I can relate to people discounting your disease as not being real suffering as a chronic fatigue patient. It's like the most invisible disease you can possibly have. Most conventional doctors just try to send me to a psychiatrist haha, that's life tho. I guess the difference between our conditions is that my disease is a constant low-grade debilitation whereas UC is a more condensed intense outbreak that comes and goes.

Good discussion, I learned something new today.

I was diagnosed “loosely” with Lyme disease after a tick bite in the summer of 2016 after a vast array of odd symptoms. I spent the next 5 months solid on a rotation of doxycycline and amoxicillin with only a very slow improvement. I ultimately stopped the treatment on my own, as I felt it was making no difference. Fast forward a year and I have blood in my stools and a diagnosis of UC. I highly suspect the antibiotics play a major role, but I have had minor signs of IBD for the past ten years. So far my UC has been mild and controlled since that first major flare but I live in a state of worry about my permanent gut flora. I’ve had a couple rounds of antibiotics since treating my UC and have been okay. I eat (and drink) whatever I want.. actually seems that the healthier I eat, the worse my gut reacts.