Farewell to UC, and this forum

I've decided to withdraw from this forum. I am constantly misunderstood and my words keep getting twisted. Now I'm being called headstrong. I have *never* attacked anyone personally on here, and all I get are personal attacks, even by moderators. Grow up!! Seriously.

Yes I'm in remission, it was confirmed by my doctor and a scope at the hospital the other day.

I did it without drugs. No, I was not misdiagnosed, I have UC.

The irony here is that I'm being called the arrogant one, when I spent virtually every waking minute of free energy researching the scientific journals and networking with other health professionals around the world: MDs, naturopaths, herbalists, people with other views on how to heal this. I did this research, not to snub the system, but because the system snubbed me. I was sent home to die. This research has been my fight for life, and I get accused of being headstrong? That's totally disrespectful. I thought this community was about sharing personal stories, and I get a moderator telling me that I'm basically just full of myself. But I see now you can only safely share your story if it conforms to a certain status quo.

I think it's REALLY unfortunate that the majority here don't want to hear my findings, and are instead accusing me of getting off easy, of being a first timer, of being headstrong, etc. So many unproven assumptions! If I didn't do the research and implement the solutions I found, I would still be stuck in bed, grossly underweight and unable to walk, in diapers, in horrible pain with bleeding and needing 24/7 support from others.

What's happening here is that many of you have been stuck with UC for years, have had medical interventions to varying degrees, some of them radical and irreversible, and you're being triggered by the fact that someone fixed their UC before it came to that. My UC was not minor whatsoever, I was the worst one in the hospital ward, all the nurses said so. I was resuscitated due to electrolyte imbalance in my heart more than once. I thought that the community here would want to celebrate with me now that I'm better, and instead I get jealous or dogmatic remarks trying to dismiss the fruits of all my really hard work, or tell me to expect a relapse. What kind of non-sense is that to say to a person who is healing from a devastating illness?

I'm done participating on this forum. I'm done with the dogma and the pessimism that keeps getting directed at me for no reason other than I just wanted to share my experience, which HAPPENS to involve alternative information. I'm sorry that you all aren't getting better or have been dealing with this for a very long time without lasting success. I hope you find what works for you like I did for me.

If you want to find out how I got into remission and how I plan to stay there, without meds, feel free to PM. I didn't just get lucky, I did a lot of background scientific work that isn't visible here. I won't be posting what worked on the open forum because it's not worth the cynical attacks anymore. It hurts my feelings, creates unnecessary stress, and really... is just an attempt to sabotage my recovery. It's the same kind of crap I've dealt with my last GI, who told me I had three weeks to live and that I would *definitely* die unless I let him remove my bowel. These people aren't healers, and neither are the people here who keep trying to correct my positive work with their pessimism. You aren't psychic and you aren't God, so stop claiming to know what will happen. You aren't an authority anymore than I am! We're all just trying to figure this out!

No, I will not have another flare, but if I do it will not be anything as severe as the utter hell I just went through. My bowels are healthier now than they were pre-flare and all my food intolerances are gone. I'm experiencing GI freedom like I haven't in years. I planned to share this with you all in a new thread along with how I did it, but given the pessimism and rudeness I've already experienced, no thanks. It's precious information that I consider to be gold and I won't just have it spat on.

I'll conclude by saying there are lies, darn lies, and then there are statistics. Your beliefs shape your physical health just as much as the meds and lifestyle changes. If you really believe that UC can never be cured, only temporarily subdued, then that's the reality you're creating for yourself. I choose to believe that there *is* a cure and that with dedication and perseverance it can be found, by doing research, self-experiment, and using the wonder of the internet to connect with others all over the world. I assumed that it could be fixed despite all the crap doctors were saying and my self-doubts, and I managed to find my golden arrow. Maybe you can too.

Please PM me if you're interested in the work I've done. To the rest of you, good luck in your healing journey!

This forum isn't actually all about you. This all sounds familiar of others who have had the same perception, left, returned with other guises, left...etc. They come, they go. Nothing new.

q

Chiron,

I enjoyed your posts and perspective. Good luck on your healing journey. Only advice (and a general one applicable to us all): never take your health for granted. And keep knocking UC down the way you're successfully doing. Cheers

something just isn't adding up here. if your disease is gone now and you were really flaring only a few weeks ago, i really think you were misdiagnosed. spontaneous remissions don't just happen, especially if you were dying as you said. you probably had colitis from some unknown trigger (or known trigger to you since it is gone now) and you did something to your diet/supplement plan to get rid of it. i have no idea, but this is not the typical path of UC at all.

I had to come back and say this ... people here are often skeptical of anyone who comes here and tells of a miraculous "cure" and then gets irritated when they are questioned about that cure. I first joined this forum because of one of those "cure" posts about nopal. That OP didn't stick around either, but I am forever grateful to him because he explained what helped him and it has helped me too. I am not sure I would say "cure", but I am well and feel as though I am in remission (had just some mild patchy inflammation remaining at my scope in May). My point is, your situation is nothing short of miraculous and if it could help even one person ... maybe not even someone here now ... it would be exceedingly generous of you to share exactly what worked for you, tolerate a few questions on the details, and then move on. I don't believe people here want anyone to fail! Forums can be blunt and misunderstandings occur. Most of all, please understand that what works for one person may not work for another ... but that doesn't negate that it works for YOU so try not to take it personal when questions are asked, or if someone says something didn't work for them. Celebrate your health and success at coming so far!!

Chiron, I personally didn't have any issues with your post because I know that the world of IBD is very strange but like I said, there are lots of conditions that can mimic UC and more often than not by the sounds of it, GI's seem to really screw people over by misDX them which still could very well be the case with you, I'm not saying it is, I'm saying there's a good chance of it though so however you want to take the meaning behind it is up to you, just like it is for everyone here....

You really can't expect to come to any health support forum and start telling people your experience which sounds awful extraordinary, to not question you about some very key things and the fact that you let it ruffle your feathers does say something more than you likely realize. I don't know, after all this is an open online forum and anyone can join and say what ever they want really but it's up to each person to use their own wits and decide what seems real and what doesn't...not to mention some people naturally have a more skeptical personality but that's the thing, if you're coming to a support forum then you should be expecting various feedback from your posts.

Don't misinterpret what I'm saying, I don't know you or anyone here (even the ones that are long timers and still posting like me) from squat but as others have pointed out, over the many years of being here, I've seen all kinds of crazy threads (not implying yours are) and people that even start out here just feeling other people out before they get all crazy and start making wild stories about their experiences with so many things they said in the past all the sudden not matching up (again not referring to you) so it's really not all that surprising that people will get turned off, especially when you consider the fact that we're all (whether we all admit it or not) sooooooooooooo fricken sick of being sick (especially some of us long timers) and it's not that we're not happy for others sharing positive experiences it's because there's nothing worse than people that are claiming experiences that many if not most of us have never had the pleasure to so easily (or at least what sounds so easily) in remission....not to say it doesn't happen, but from what I recall which granted my memory isn't the very best) you're the first person I know of here as of lately that has come to this forum sick and then in a short time already in remission and to boot, without major drugs.

Take care and be well and best of luck with your health now and in the future.

We have no problem "hearing your findings" but everybody is different when it comes to this disease.

One thing you have to understand in this forum.......people get stressed out, fed up and at their wits end. It's hard sometimes to type the way you feel and to have people understand it. Everyone deals with this disease in different ways.

Honestly, I think your thread is nasty, but that's just my opinion....

Good luck to you. Glad you are feeling better.

Imagine Gary, if it hadn't worked for you what you're responses would be to any current or future threads on the topic would be??? I can easily guess what your take on it towards people offering the advice of Nopal, can you?

It's great that you found it helps but everyone's guilty sometimes more than they should be about knocking things that do have merit that you don't agree with and going to the extreme of causing unnecessary arguments as a result.

I just find it hilarious that you felt the need to sanctimoniously announce that you're leaving us :p

bananagirl said...
something just isn't adding up here. if your disease is gone now and you were really flaring only a few weeks ago, i really think you were misdiagnosed. spontaneous remissions don't just happen, especially if you were dying as you said. you probably had colitis from some unknown trigger (or known trigger to you since it is gone now) and you did something to your diet/supplement plan to get rid of it. i have no idea, but this is not the typical path of UC at all.

I've been wondering this, so thanks for bringing it up. And it would explain why people are resistant to what I've been saying. But before my flare, I had a colonoscopy + biopsy that the GI said indicated UC. But then I had irregular inflammation in other parts of the bowel. You may be right, something doesn't add up. It's not like my bowels are 100% perfect right now though either... I'll probably be in an IBS situation for life. I'm just saying that right now my bowels are better than they have been in years. I've considered that maybe there was some kind of pathogen in there long term and it took getting extremely ill to finally take action about it. I mean, why would UC meds not really work on me?

I'm seeing my GI in two weeks and I'll see what he has to say. Probably the usual non-sense about how I'm guaranteed to relapse and I should just get surgery already.

quincy said...
This forum isn't actually all about you. This all sounds familiar of others who have had the same perception, left, returned with other guises, left...etc. They come, they go. Nothing new.

Thanks, I know that.

Return with other guises? Paranoid much?

Your comment is precisely why I'm so outta here after this thread is done. The arrogance is incredible.

iPoop said...
It's unfortunate that you feel this way, but it's your choice. No one has attacked you personally.

Actually yes they have. In any scientific debate you critique the information instead of attacking the presenter, and that's not what has happened here. People accuse me of having no credibility because I didn't have it as bad as they did, which has no relevance to the information I've presented. Equivocating suffering is not the same as disproving information.

I'm sorry that I didn't suffer for 10 years with UC before I got better. But in the time I have had UC (which is more than 3 years by the way, not just the past few months of actual flaring) I suffered horribly and my family was prepared to watch me go. So excuse me if I'm just a little bit angry that there are some people on here (like gary) who think they're entitled to talk down to me just because they are unfortunate veterans of this disease. There's all this talk about how we need to be open about what might work differently for others but in my time on HW I have not been granted that same courtesy. So again excuse me if I'm just a bit irritated.

CCinPA said...
Most of all, please understand that what works for one person may not work for another ... but that doesn't negate that it works for YOU so try not to take it personal when questions are asked, or if someone says something didn't work for them. Celebrate your health and success at coming so far!!

I don't take questioning personally. What I take personally is the automatic pessimism and cynicism, and being told that I should basically expect to relapse in the future. If it happens it happens, and if it doesn't, then what? Seems like there's no winning. If I came back here in 5 years and said "Hey, still no flare!" People will say, "Well, wait 10 years and see."

Again, if you believe you're going to get sick, you'll get sick. *shrug* And maybe you will anyway, but it's unethical to tell someone in remission to expect a relapse. It's not supportive and in fact it's destructive.

Trust me, I AM celebrating. My friends and family are so grateful I'm alive and regaining health every day.

If you'd like to know what worked for me please PM.

garylouisville said...
As far as I can remember, Chiron's main "cure" seems to entail the SCD diet. There have been many here who have claimed and still claim success with the SCD diet so this is not new to us and it is something that has been proven (more or less) to help several people on this site, some long term. That doesn't mean it will work on the masses. There have been many, many more who tried the SCD diet and it did nothing for them, absolutely nothing.

I did try the SCD diet but it didn't work for me, so I abandoned it. You've been one of my most outspoken critics gary, yet you can't even get the story right. It's incredibly unethical to tell someone to expect to relapse. It's wrong and you should be ashamed. It's not your business to go around the forum telling people how bad they're going to have it, or that they lack credibility because they don't have it as bad as you. What makes you the expert on my body? All you know is your own experience, just like all I know is my experience, and that's ALL I've tried to share. Yet you show up to cut me down at every turn and try to assert that modern meds are the only thing that will ever control this, even though, as I've already stated, they did not control my UC!

As I already stated, prednisone did NOTHING to suppress my UC. I was on 60mg IV methylprednisone for 1 month combined with other meds, and I was still bleeding and having 20 BMs per day. I was still on oral pred several weeks ago only because I was tapering off of that utterly useless medication. I got every stupid side effect and practically no benefit. If I'm lucky I won't have lasting damage from it. As for remicade, I received two doses and the doctors said it wasn't working so they cut me off. ASA's? Made me bleed internally, mostly from the upper GI. For me, these medications were poisons, and I suffered to an almost fatal degree from my UC anyway! Yay modern medicine!

I'm tired of re-telling my story over and over because you have selective reading and only see what you want to see, and show up in my threads to take a dump on whatever I have to say. All I can say is, if you want I can return in 1 year and tell you my status, but I doubt anything will allay your skepticism. I guarantee you I won't be flaring in a year, I can almost bet on it. But I would honestly tell you with a truthful update. What do you think?

CCinPA is right... I should just take my good health and go, I don't have anything to prove really. I just thought I could contribute what worked for me to the community and greater body of knowledge here before moving on. But I should just go before I make thing worse.

Not sure what I missed. I recall a 2-year remission where I thought I beat UC ( PAN UC ) and everyone still suffering must surely be fools.

So in recent times I do not even post while flaring but later while testing theories.

What was his cure ? SCD ?

I hope your remission is permanent

However I have a feeling we'll be seeing you again when you relapse

Good luck

I don't know, if I was sharing about getting into remission quickly (without meds) and vowing I'll never be sick again and then became sick again I sure wouldn't come back and tell anyone so I can get lynched and read a bunch of "I told you so's" lol!