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Crohn's Disease
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Posted 9/7/2010 2:32 AM (GMT 0)
NiveCupOfTea: The point was I just needed to talk about it, my friends and family have limited patience with it because they havent had the disease, they cant really relate to any part of what Ive been through.

Imagine this happened to you. How would you react?
Posted 9/7/2010 2:39 AM (GMT 0)
So again, I'd like to know if anyone has had their belly button removed and do they feel better?


I may put some oil of oregano on mine tomorrow. ;-) I wonder if it would penetrate deep enough...?
Posted 9/7/2010 2:45 AM (GMT 0)
I'm going to ask my GI if he's had patients with CD who had their belly buttons removed or even laporascopic surgery through the belly button and what was the outcome for the CD.
Posted 9/7/2010 2:48 AM (GMT 0)
Can someone who's read these posts sum it up in a reasonable paragraph?
Posted 9/7/2010 2:53 AM (GMT 0)
I feel the need to say that i cant be responsible for what you choose to do.

By all means read everything Ive written and think about it, any decision you come to you need to come to yourself, I will not tell you what to do because I simply dont have the education to know everything that is at play with this disease or any other.

The only thing I can advise if it is something you want to pursue, print out what Ive written and discuss with your doctor and come to a decision with them on board. Dont do it alone. I regret not having a Doctor accompany me through this last 6 months, mostly because for them to see someone go from being in a really bad way to healthy means theyll have to watch someone else go through it.

I am willing to experiment on myself and I am willing to be quite extreme when it comes to how I treat myself, but never someone else. Not without knowing all that is needed to know.
Posted 9/7/2010 2:56 AM (GMT 0)

Sir Oinksalot said...
NiveCupOfTea: The point was I just needed to talk about it, my friends and family have limited patience with it because they havent had the disease, they cant really relate to any part of what Ive been through.

Imagine this happened to you. How would you react?

Fair do's. It's a reasonable enough answer. Unfortunately you're gonna get rather a lot of scepticism here too. I actually would give it a go if I could, 'cos it doesn't seem like it can do any harm if it doesn't work. To be honest: I'm curious, despite myself.

@Rider - I would (I read the entire thread on the RA board), but I really have to get to bed now. I imagine somebody else will do it, but if they don't I'll do it tomorrow sometime.
Posted 9/7/2010 2:56 AM (GMT 0)
Sir Oinksalot, I really appreciate you sharing your theory with us. We need more open minded people who are willing to explore what the heck causes this disease.
I'm sure many of us will be posing your ideas to our GIs too. Hey, it can't hurt to ask questions and think about possibilities.
Posted 9/7/2010 3:01 AM (GMT 0)
i don't get this, in the post you said you used a magnet on your belly button then did "nothing." Now you're saying you did something to your bellybutton? Are you saying the magnet somehow got rid of your belly button? ***

Sir Oinksalot said...
This is what I did on March 17th 2010.

I placed an electromagnet, that resonated at 7.83hz, on my belly button and went to sleep with it on.

(Over on the RA forum I have talked about why I did that: https://www.healingwell.com/community/default.aspx?f=10&m=1892018)

From that point on I did nothing. I put the electromagnet away and I continued my lifestyle just the way it was. No special diet, exercise, work and I did no health treatments of any kind, no medications, vitamins or physical therapies.

The result:

After the first night my body felt different somehow. I was still in a lot of pain, just as I had been for the previous few years but as the days went by I noticed my current symptoms disappearing. Once they had disappeared I felt something else start hurting, then easing, then feeling good. This happened a number of times for the first few weeks until I realized that each part of my body that would begin to hurt, ease then feel good was something I had had arthritis in at some point in my life. As the weeks went by it became apparent that my body was moving back through my disease in reverse and as it woke parts of my body up that were in remission, it would hurt and then get better and then move onto the next thing.

In essence I experienced my disease in reverse and all the pain that went along with that. I had no control over this, my body just did it and I had to grit my teeth and ride it out. The nice thing was that it was very quick. Symptoms that had plagued my for years in the past came back and were healed in days or weeks. I must say that the pain was the same but having it paired with a feeling of it healing and getting better made it bearable versus the pain in the past that just kept getting worse with no end in sight.

I didn't change my lifestyle and every day I felt my health improve. It was unstoppable, nothing I did made it stop, nothing I did made it take a step backwards. Since that night on March 17th every day has been a forward step.

One part that spun me out completely was my ankle, my ankle first got hit by RA when I was 10, after being put under and having my entire ankle flooded with steroids my ankle never hurt again. A couple months ago my ankle started hurting, it lasted 2 days then was gone. Living with that ankle in remission for 20 years feels nothing like what my ankle feels like now, I cant find any other way to say it other than it feels alive.

Since an hour or so ago, that pinched nerve has resolved itself and my shoulder feels halfway better.

Theres just no way I can put this in the remission pigeon hole, 6 months of slowly having my symptoms come and go in reverse, even the ones I had as a child, no this is not remission but something else.

Posted 9/7/2010 3:05 AM (GMT 0)
CrazyHarry....love ya!

Roni, thanks for asking about my son! He's off for his freshman year at college! Gosh, where does the time go??? He is doing very, very well, thank you Jesus!

Sir OA, I am in the same boat as MAG102...and maybe a few others. I'm not completely following, even tho I've now read your posts on the other forum. How did you determine the belly button was the source of the problem?
Posted 9/7/2010 3:06 AM (GMT 0)
I think this is what Sir Oinksalot's theory is:

Bacteria or some microorganism is hiding in the belly button where the immune system cannot reach and kill it. As a result, the bacteria manifests in the rests of the body as CD or other illness.

So Sir Oinksalot theorizes that electromagnet forces the bacteria out of its hiding spot so the human immune system can get rid of it.

Is this pretty much it, Sir Oinksalot?
Posted 9/7/2010 3:13 AM (GMT 0)
Roni - Yes thats pretty much it - though for me the whole manifestation was RA, Psoriasis, CD & AS

jpnutritionfirst - How Roni summed it up is the best way to explain why I then did "nothing"

The magnet pushed it out of the hiding spot, and then i did nothing, my body did everything that was needed after that point and i was just along for the ride.
Posted 9/7/2010 3:51 AM (GMT 0)
Because someone asked, I cant give you instructions on making one since theres no way for me to ensure you can make one safely but someone asked and here are the things you need to know about my EM magnet if you wanted to find someone to make one and try for yourself.

Basically if someone needs to ask how to make one I dont want to tell, I have my reservations about sharing that because it involves electricity and soldering and safety is always paramount. You shouldnt be attempting to make electrical equipment without knowing how to keep it all safe.

If you can find an electrically minded person who you can trust to do this, then they should be able to figure out how to make one.

The magnetic coil was made to provide a large surface area of north-south running emf, as opposed to wrapping a coil in the conventional way to just use the north and south poles of the EM with very little length given to the sides of the magnet.

I used the side of the coil on my belly button and not the poles of the magnet. The coil was the size of a DVD case and only required 20 metres of 0.8mm wire.

The electricity supplied peaked at approx 12volts, and was supplied as a simulated Sine wave (Square wave approximating a Sine wave at 44.1khz sample rate) DC current with a resonance frequency of 7.83hz.
Posted 9/7/2010 6:14 AM (GMT 0)
I've had 4 laproscopic surgeries so my belly button is now just basically an indent, nothing of the original remains. I was diagnosed with "ileitis, probably Crohn's" after surgery number 3. I still have the symptoms so having your belly button removed probably won't help.
Posted 9/7/2010 8:05 AM (GMT 0)
roni, yes i have had my BB removed 11 years ago , no change. except i got no place to store lint. in fact if anything i got worse.
Posted 9/7/2010 1:37 PM (GMT 0)
Dagger & randynoguts: Im not surprised, it doesnt make me happy to hear that, but i expected it because I know that what works for one person wont necessarily work for all people.

I never came on here claiming to have "the answer", if I knew all that was needed, well I dont know what I would do. I came on here to talk about what Ive been through, this has just been an account of what I have been through and hasnt been about getting anyone to do anything.

I am aware of the alternative possibilities to what I think worked for me, the way I see it they are:

That the EM was key - which to me would be unfortunate, I dont see a med system that would be eager to venture into such a kooky seeming area to treat disease

That the cache of bacteria could be somewhere else besides the BB - Which just means a way to screen a whole persons body would need to happen (keep in mind I only started looking around for this cache and landed on my BB because of reading about that cache scenario affecting disease because of root canals in peoples teeth, I never had root canals so I had to look elsewhere, the BB is just where I got to stop looking)

Or that for some people the cause of disease is going to be something else entirely, no cache of bacteria, no significance to the EM - Which would really suck as then nothing changes for people in that situation until more is discovered.

I am aware of these things, I never took the stance that this is what people here should be doing, this is just my experience that I have been through and wanted to talk about.

As to discovering what was and wasnt the case with me, well thats why I went back to the doctor when Ive felt better than I ever have in my life, so she could write my case up and the right people could be found to investigate whats what. I am not that person, if I gave that impression I certainly didnt mean to.

Maybe Ill lose the need to talk about my experience soon, I just needed to get it off my chest.

I can handle the criticism and skepticism, Im not afraid of being wrong, if I am I will deal with that just as Ive dealt with everything life has thrown at me so far.

This has simply been an account of my experience and my hope that it leads to something doctors can use to help others. They get a chance now to investigate why someone got better, and they have more to go on than simply "it just went away", I did something to cause it to happen, that gives them a lead to follow.

I guess I didnt want to erase my past with the disease, my past brought me to where I am today and I dont know how much my past has made me who I am. I am finding it difficult to talk to people with or without these diseases about m past and what Ive been through. Is my only option to not talk about it? How do I tell someone I had the disease and then when they ask why I am so healthy, how do I tell them what happened? To someone with the disease it seems unfair to me to not say anything, to someone who has never had the disease it seems wrong to have to hide the truth of what Ive been through.

I dont know whats gonna happen on that score, Ive always told the truth regarding my disease, Ive never used it as an excuse and having people doubt my word all my life because they cant understand the condition has been hard. Everything I have written on this forum is the truth, it is what I have been through. What it all means is beyond me. Maybe one day it will be completely understood, but that isnt today.

I have had conversations with people without these diseases and the conversations, face to face, have been very similar to this thread, I didnt expect to see the same reaction here.

Maybe I just give what help I can to the Doctors and then put my past behind me and not let the memory of disease and recovering rob me of any more of my time. Theres something about that idea that seems to ring true to me.

That's something for me to think about.

Homer Simpson said it best when he said: "The problem is communication... too much communication" :)

Post Edited (Sir Oinksalot) : 9/7/2010 8:03:54 AM (GMT-6)

Posted 9/7/2010 2:05 PM (GMT 0)
SO, CD is probably microorganism (MO) related somehow. Your theory is still viable since the MO could be dormant for a time, hibernating in another area of the body, who knows. The Aussie doctor who was investigating a 2-3 year anti MAP treatment for CD patients said that he thinks some bacteria can reproduce so slowly it would takes years to kill some.

I hope no matter what, you will be well and if you stay well, keep encouraging your docs and others to investigate and be open minded.

I'll still ask my GI about others who've had the BB sanitized through surgery or removed and if it improved the CD.
Posted 9/7/2010 2:33 PM (GMT 0)
I have lost my BB too, and I still have Crohns. And you did come on here claiming to have been cured by getting this bacteria out of your bellybutton and that we could all be cured too! But when anyone asked you about it, you defer to it might be too dangerous, won't provide us a doctor name, and won't do any scopes to prove you have been cured. So do you see why so many folks are VERY sceptical? JMHO
Posted 9/8/2010 2:35 AM (GMT 0)
I think some people are slamming Sir Oink's too hard. Just like anyone else, he is entitled to his theories, opinion, self- diagnosis etc. We all know that there is more than one cause to most diseases, including CD, so there is bound to be more than one answer.

Also, s scope cannot prove you've been cured. Lots of people during remission are able to heal the intestinal mucousa completely.

I'm not saying that I believe in this therapy. In fact, I don't. But if we are so skeptical that we shoot down every possible alternative treatment, how are we going to get closer to a cure? How are we going to get closer to answer? If we eliminate 10,000 things that don;'t work, it may bring us closer to the thing that does work.

Heck the dude even apologised and came back on after numerous people personally debunked his theory.

Seems a few people are so QUICK to just pee on any hope of a cure, any hope of an alternative therapy helping. Maybe having CD for ages makes you pessimistic of a cure but we need to have hope. Without hope no-one is even going to bother to try new therapies. Heck, hundreds of people on anti-MAP have been in clinical remission for years and scopes showed no sign of disease..cured?? We don't know for sure yet, but even with the indisputable evidence that anti-MAP works for some people like a miracle, still I got the vibe from some that it was a waste of time and I may as well try smoking crack.

If its the miracle treatement for some, leave well enough alone. Decide to try it, or decide to reject it. But don't dismiss the fact that its helped for others.

Sir Oinks- wow, congrats! I have never even had a remission in my 13 dx'd yrs of CD. Must feel great to feel so healthy and vibrant!
Posted 9/8/2010 2:50 AM (GMT 0)
*applause* for Tara.
Posted 9/8/2010 3:23 AM (GMT 0)
double applause for Tara...

I agree wholeheartedly... however you achieved your goal.. congrats to you.. it must be wonderful to feel so good.... I am so happy for you...gives me hope that one day we will all have our answers...thanks for sharing.
Posted 9/8/2010 3:29 AM (GMT 0)
thanks, ladies!
Being the anxious girl I am, I was mentally preparing for a lifetime ban for rocking the boat :(
Posted 9/8/2010 4:08 AM (GMT 0)
my belly button is still intact after two surgeries, but it was cut through both times.

i need more "evidence" of removal of the belly button being the missing link in all of this. i would put more credence in the magnet, but then i have a science background.

all said, at the end of the day, i dont care if we never truly can pinpoint what worked for sir oinksalot just as long he's doing well and can continue his remission. i always like hearing good news, especially good news such as this.
Posted 9/8/2010 5:07 AM (GMT 0)
I think it takes courage to speak out, Tara, and you were speaking for peace and acceptance, so bravo! to you.
Posted 9/8/2010 5:42 AM (GMT 0)

scool Mike I cannot discount what you've said here but I congratulate you on how you've handled it. I stayed out of this conversation to see how you did handled it (the new guy). I wish you lived here in Vancouver B.C. as I'd ask you to allow me to give it a try. I wounder if any of our Aussie friends lived near you would be willing to try it (assuming you'd be willing to help them). I hope your Dr will carry out and publish your experience and have reaserchers test it and prove it true or false. I'm strongly cheering for true. If a spectacular recovery happen to me as the result of something I tried, I'd want to share it with the people who suffer in a similar way. Remember all that the Chinese person who dscovered accupuncture was probably ridiculed when his treatment was new. The same things apply to many other treatment through the years. Who's to say this isn't the same. But it will require the medical proffession to test and agree for it to be used universally. Congratulations for your turnaround in your health for whatever the reason it turn out to be. By the way I don't understand the part about removing the belly button, I don't think you ever said that unless I missed something somewhere. Please correct me if I'm wrong. I also understand the many of us who don't believe this is possible as too many 'cures" have hurt alot of people in the past. Good luck with your continued good health. Rob

Posted 9/8/2010 9:25 AM (GMT 0)
Thanks for the replies everyone. and Grandpato2 - that made me feel very good to have you say that.

Nanners - there is one thing about what Ive been through that scares the crap out of me. The part where I literally experienced every symptom I ever had come out of remission and heal one by one. There were a few symptoms I didnt remember ever having and then after talking to my mum I found out that it had happened to me when I was really young.

So yes it "might" be dangerous. I have a fear that if someone had a life threatening symptom in the past, and their experience mirrored mine that they could experience their life threatening symptom again. Now I dont "think" that could happen, if the body is just healing then its not going to be stupid enough to kill itself in trying to get better, but then I dont know. I know my crohn's coming out of remission and healing didnt bleed this time but how can I use that experience to say to someone "dont worry about the heart attack you had 3 years ago, that wont happen".

How could I in good conscience ignore what might be a very real concern. Its why I keep coming back to: This belongs in the hands of doctors.

I have come face to face with people in the last couple months who have one or some of the 4 diseases I was diagnosed with, and I told them about what I had done, I wrote it all up for them to read and think about for themselves. They asked what I did, the what/why/hows and I answered as best I could, just as I have done here. Now if one of those people gets back to me saying they want to do it, well I am not going to agree to help them without a doctor on board. Two people I know as friends asked to use my EM, and I lent it to them since with both we had already done the talking part about the what/why/hows thing. Neither have diagnosed diseases, they were just curious, but I insisted they also talk to their doctor about it, which they did and then I lent them my EM.

Those two friends have seen their health improve in various ways. Which is cool and we get to talk about how bizarre and weird it is.

If someone here wants me to help them and they live in the same city as me its the same rules. Have a doctor of your own on board to watch over you, keep you safe if needs be and maybe even help with whatever drugs/treatments could speed it up, make it less painful etc, and to be a witness to what happens so it may be added to my account for the med industry to investigate.

I stand by my word so I have no qualms about putting my email address here if you want to contact me:
mikeblah (at symbol goes here, no spaces) iinet.net.au

Again thank you all, even the critics, asking those questions brings answers and shows where answers need to be found so I appreciate that for its role all the same. Ive lived with pain all my life till now, some criticism that hurts/challenges? yeh I think I can handle that and not be crushed by it or lose the plot hehe. Thanks for the supportive comments and the well wishing.

I hope everyone finds the answer they need, whatever it may be.
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