Would you be mad... hypothetical question

Probably a bit of both. Honestly, I would be super grateful first. Being a young person and freshly diagnosed, I have fantasized what it would be like to actually have something else that was curable. I would be so happy. Later the anger would probably set in, and I might spend my life promoting awareness of this issue or doing something to see where the medical system failed me so badly and trying to promote awareness and solutions for that problem.

I was reading a segment on Zen Master Thich Nhat Hanh's teachings on Buddhism and he said something that rang true with my soul: real happiness cannot exist without suffering. Suffering is like the left of the happiness' right. A lotus only sprouts out from mud.

The definition(s) of happiness that are perpetuated by society is fairly narrow - money, materialism, cars, houses, corporate jobs - they are all superficial IMO. Health is perhaps the greatest gift of them all. The health to go out and experience life to the fullest.

The point is that is that hardships in life make us happier, more present and grateful. There can be no gain without suffering and this is what the Buddha's journey revealed.

Anger might help temporary, as it is crucial to express one's feelings, but I'd feel gratitude and true happiness. I think the disease, for me, was the ultimate learning experience. It definitely changed my life trajectory and helped me find my purpose in life.

Without it, I know for sure that I'd be mindless zombie and another cog in the corporate wheel (I share a fairly draconian view on corporatism and career ladders so please don't take offense to that statement).

That being said, I have my share of forgiving to do to doctors. I hold them to high standards but some of my anger towards them is unwarranted. My work is never finished.

Hope this helps.

There's never been much room for doubt with me, but I think I'd be too busy being relieved and grateful to be angry. I know I was diagnosed using the best knowledge that was available at the time. We learn new things all the time, and we as humans keep striving to find new and better ways to do things and to understand things.

I'd just be grateful there was new knowledge available, and hope the treatment for whatever I did have was easy and successful.

Something bacterial!!!!

I have thought about that too Andrina. Like, what would it take to believe it was a misdiagnosis and not just remission? and if it's remission you want to keep treating with maintenance meds so you continue to stay in remission.

Do you mean misdiagnosed with just IBS (another life long battle with your bowels) I would be relieved if I never had IBD/was misDX with it, but if I was still having gut issues as a result of something else like IBS I still wouldn't be impressed with my body.

Since I have both IBD and IBS (and lactose inotlerance) I'm happy my IBD is in remission but thanks to the IBS I really don't notice much difference in my life, I still can't just freely come and go, I can't wake up in the morning and not worry about getting BM's out before I can do much of anything else...and I still have bm's randomly throughout the day and night so for me the IBS still holds me back a lot from living.

I don't think it's healthy to be thinking of us....wishful thinking! We would all dream of the day that someone tells us it was all a mistake and that we don't have this beast of a disease. For someone to tell u you will never have another flare up again and that you're not a ticking time bomb would be a dream come true. But it's not going to happen :(

Btw I would be annoyed that I have taken strong meds for 20 years for no reason!

Thoreau said...
I would move on and not look back! Happy days ahead!!

I think I like your answer the best Thoreau

pb4 said...
Do you mean misdiagnosed with just IBS (another life long battle with your bowels) I would be relieved if I never had IBD/was misDX with it, but if I was still having gut issues as a result of something else like IBS I still wouldn't be impressed with my body.

Since I have both IBD and IBS (and lactose inotlerance) I'm happy my IBD is in remission but thanks to the IBS I really don't notice much difference in my life, I still can't just freely come and go, I can't wake up in the morning and not worry about getting BM's out before I can do much of anything else...and I still have bm's randomly throughout the day and night so for me the IBS still holds me back a lot from living.

This, a million times.

Urgency isn't my problem, but my stomach woes are far from over. Almost every day I seem to have trouble with my bowels - a horribly uncomfortable sense of pressure; pain/soreness, especially near the stoma, etc. Once it starts it can go on for several hours. I'm suffering badly from anxiety as it is, and this just creates an almost unbearable anxiety spike.

I'm not 100% certain it's IBS, but I seem to be clear for Crohn's, so it's hard to see what else it can be. Whatever it is, I still cannot eat freely without worrying - the joy of eating good food has largely been robbed from me.

PS: I suppose there is an outside chance it could be SIBO. I'm not very optimistic that it is though.

PPS: I reckon some people who claim they would move on and not look back are deluding themselves a bit - some, not all (a minority of people do seem to have an amazing capacity for forgiveness). Twenty years of your life lost to horrible meds, bad side-effects, life-ruining flare-ups, hospitalisations, and perhaps unnecessary surgeries. And you wouldn't be bothered by that? Really?

Post Edited (NiceCupOfTea) : 12/20/2014 8:22:02 AM (GMT-7)

In my case there was absolutely no doubt I had Crohn's colitis anyway. Every colonoscopy I have had since diagnosis showed pancolitis, and the pathology report of my colon after surgery basically said I had severe chronic and acute inflammation.

Wondering whether I really had Crohn's or not is not something I lose any sleep over. But I'm still pissed off I got it; that I lost my 30s to it; and that I'm still having stomach problems after surgery. The last one particularly feels like insult has been added to injury.

More generally, I don't think I have heard of anyone being misdiagnosed with UC for 20 years. Much more common is for UC or Crohn's to be misdiagnosed as IBS first of all, sometimes for years.

NCOT, I'm sorry you're still not doing well after having surgery...this IBD and IBS life really sucks hard!!

malaika, It would be good to know, even though the same meds are used to treat crohn's colitis as UC, if you had CD rather than UC and it ever decided to start affecting other parts of your colon (like it's famous for doing) then having a heads up would be a good thing...there are "5 sutypes of crohn's disease" (easy google search with those words) it wouldn't be a bad idea for anyone that has UC but suspects it might actually be crohn's instead to check out the 5 subtypes of crohn's disease.

I would be ecstatic! Then it would mean I could be cured :) And I don't have to keep taking toxic medications. I wouldn't be disappointed for missing special occasions because at that time the symptoms were still there regardless of the cause.