one of the best ideas ive had

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1s
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 10/28/2007 3:21 AM (GMT -7)   
this post is intended to throw out some ideas that i have recently acquired, and to see if anyone can be helped by them or can add more knowledge to them
 
After seeing 3 incompetant GI's, I had the idea to go see my old ENT(ear nose and throat specialist). Figured he would have an understanding of mucus which could relate to the colon.
 
he left me with a few thoughts
1. mentioned the role of digestive enzymes as similar to that of cystic fibrosis, which is probably more researched than uc. i will be checking some medical journals once i am done with midterms.
 
2. You can strengthen the mucous layer all you want, but if it cant bond properly with the intestinal wall, it is useless. this explains why i pass extremeley thick mucous
 
3. first time ive heard a doctor admit that steriods are bad! even though he has had me on them in the past haha
 
4. you have to properly reduce inflammation in order to allow the mucous to bond
 
5. the mucous membrane may be recieving distorted/incorrect signals from the parasympathetic nervous system
 
6. there is some potential to manually control mucous production in th ecolon by using stimuli- ex. hot peppers can make eyes water, nose run, and throat lubricate, all mucous membranes, although the intestinal mmucus is set on a delay, there may be a way here to control it.
 
It was nice to talk to a doctor who actually talks to you exhibiting signs of a brain. my prior GI's were unable to tell me that i was aenmic (when my hemoglobin count was HALF of what it should have been), and didnt have the thought to test my stool for c. diff even though i mentioned antibiotic use.
 
 
anyway just sharing what i have picked up, if anyone can add to this please do. i personally believe that restoring and maintaining the mucous layer is the key to remission.
 
left sided
prescribed lialda
take herbal meds instead


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 10/28/2007 3:50 AM (GMT -7)   
The latest thinking is that colitis is a disease of the parasympathetic nervous system. Do you have any idea or exercies or tips for controlling the signals from this system. The parasympathetic nervous system is very much connected with how we breathe. Incorrect breathing patterns effect this system. Correcting breathing should be via the stomach muscles and your lungs should expand out and in and not up and down. Difficult to break this cycle if you've spent years breathing incorrectly.

Look at a sprinter after they have finished a race and are panting. It is very obivous that they are breathing out and in and now up and down. Their diaprhram always remains at the same height.
2400 mg Asacol + 500mg suppositories as needed
Acidophilus
No Stress and a positive attitude (mostly!)
 
My colon appears to be acting somewhat normal (ssssshhhhh...don't jinx it)
 
 
 
 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 10/28/2007 9:31 AM (GMT -7)   
Interesting stuff. Damo, in answer to your question about breathing exercises, you can find them online if you look up singing and breathing. As a wind instrument player, I spent years working on breathing "lower" from the diaphram and not the chest. It takes a lot of practice but it really does feel good.

Interestingly, I've never had stomach pain while playing my instrument. It always goes away. Cool, huh?

Here's a simple exercise for relaxing breathing:
Lie on the floor with your knees up. Put your hands on your stomach.
When you breathe in, your stomach should go OUT (up).
You then use those muscles to expell the air.
So as you breathe out, your stomach/diaphram muscles are really working.
You can feel the expansion and muscles in your back as well if you are lieing on the floor.

I've also practiced this kind of breathing in conjunction with deep meditation/ hypnotherapy.

If you look up hypnotherapy and IBS, you'll find some interesting info. It's mostly about relaxing your body intensely. Again, it feels fantastic. I've been able to relax my body enough to keep myself from having an accident; buying myself enough time to get to a bathroom.

1s-- thanks for this really intriguing post. about #4 -- if you search here, you will find all kinds of stories about people who have difficult getting off steroids. We all worry about this.

Maybe your ENT knows a local GI with a brain?? I'm always happy to hear when people take control of their medical treatment and don't blindly follow doctors without understanding what's going on. Very inspiring!
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


damo123
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Date Joined Jul 2007
Total Posts : 713
   Posted 10/28/2007 11:29 AM (GMT -7)   
This ties in with the Chinese medicine theory of colitis i.e. that there is too much "heat" or "energy" being vented up in the body and that this is causing inner distress. They view a connection between the lungs and the large intestine. Colitis is merely a symptom of an energy problem in the body in the flow of energy from the lungs to the colon.
2400 mg Asacol + 500mg suppositories as needed
Acidophilus
No Stress and a positive attitude (mostly!)
 
My colon appears to be acting somewhat normal (ssssshhhhh...don't jinx it)
 
 
 
 
 


1s
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 10/29/2007 2:22 AM (GMT -7)   
My stepmom is on prednisone for a different autoimmune disorder. shes stuck on it, cant reduce her dosage. she has to take 2 or 3 other medicines just to fight the side effects of the prednisone.
Its really ridiculous.
I read somewhere that the only reason that UC is considered autoimmune is because it responds to steriod treatment and they didnt have any better classification.
Damo- if the idea that its a parasympathetic problem gets some more attention they may find something big.
Julee- thanks.. i forgot about music related breathing exercises. i used to play trumpet and there was one exercise that we always did, ill have to relearn it....
i don tthink i have any more gi's in my future. My ENT gave me a referral to one of those "superdoctors" who choose who they want to see because they are friends. this guy is an immunologist and infectious disease specialist. who knows what will happen there.

Damo again- ive been under the impression of the opposite, that there was not enough heat. I think that goes on an individual basis... When i could afford accupuncture, I was also getting the moxibustion treatments to create heat at the related points. She told me to eat foods that are warming. However I dont doubt for a minute that colitis is connected to bad breathing. I have always had breathing problems, and the colitis came a little after i had surgery to open up my nasal passages, hence the ENT... I do pranayam for a breathing exercise with certain hand positions from an Indian book about acupressure called "Health in your Hands" That actually helps me in terms of pain and holding it in until i find a bathroom. Posture is also a big factor. When I was lifting weights I had unbalanced muscle growth, bending my spine. Now i "roll" my spine on the flat ground and that brings me some relief. Thanks
left sided
prescribed lialda
take herbal meds instead


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 10/29/2007 5:31 AM (GMT -7)   
1s,

I'm assuming that you think the key to remission is because of the posts I had up earlier in the year about mucus manipulation. In going over your remarks I noticed that you think that changing the viscosity and amount of mucus is not a viable option if it doesn't "stick" to the colon wall. I'm wondering how you come to that conclusion because you seem to be confused about the mucus theory.

I'll begin with your statement that you think you are passing "thick mucus." You couldn't be more wrong. What you are passing is EXCESS defectively made mucus that forms in response to inflammatory signals in the colon because of the disease process and inflammation. This mucus comes out that way because it is being produces in EXCESS and thus made VISCOUS, meaning that it may be PLENTIFUL but it is thinned out and extra runny compared to how it normally is. If you bothered to read the posted medical journal references about it that I posted before you'd know that in UC mucus is either thin or absent in the inflammed parts and was shown very clearly in PHOTOS. When mucus is THINNED out( meaning RUNNY) and becomes viscous the bacteria will cross through enmass and further aggravate and sustain the inflammation. The mucus becomes "pooled" in the rectum because it becomes so runny and that is why you think erroneously that you have THICK mucus. In reality you have just more thinned out mucus that is defective that has gathered in the rectum.

Your assumption that you have to FIRST reduce inflammation then the mucus will bond is also wrong. During the inflammation goblet cells are destroyed that make mucus and it's the goblet cells that have to come back before the mucus will be made correctly and as studies have shown, the better made less viscous mucus made by the correct amount of goblet cells, the less inflammation you will have. They have also shown that certain populations of people with UC have anti-goblet cell antibodies. http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=9207267&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

However, there are many many types of colitis but many of them will show this defective mucus no matter how it's caused. We have an ability as people with UC to manually manipulate this via phosphatidylcholine enemas to help THICKEN the VISCOSITY of the mucus, not increase the AMOUNT of thin runny mucus. Will this help everyone? No because of the vast variety of types of colitis. But inflammation in itself will destroy goblet cells and the mucus barrier regardless of the type of UC you have. We can change this ourselves WITHOUT having to take horrendous prescription meds. Yippee. This has been gone over before.

I think we also went over the idea of proper breathing to induce the parasypathetic pathway but I found that the actual receptor it works on is the nicotinic receptor eventually and as we all know taking nicotine has not worked out to induce long term remission for the vast majority that have tried that and this breathing technique would be analogous to that.

I'm not sure your idea about using hot peppers to induce mucus production is wise because this merely over excites the receptor that responds to the stimuli and temporarily at best stops the pain signals. Capsaicin cream is well know to arthritis sufferers and it's no long term treatment because eventually the body figures out a way to overcome the lack of this pain signal and now you have a new pain pathway upregulated that is worse than the original. Look up capsazipine and nerve ablation of this receptor and you'll see what I'm talking about. I avoid any kind of hot peppers for this reason. It is only a short term stop gap and long term it makes things worse.

I'm glad you think that mucus manipulation is a good way to control symptoms but it looks like you think this way for the wrong reasons. Look in the archives here for old postings I have about it. I do phosphatidylcholine enemas and have been able to lower my dose of asacol and my symptoms are basically non existant. I have tried to eliminate the asacol all together but the inflammation comes back as I'm not able to fully cover the entire colon with the enemas yet. Whatever underlying process is driving the inflammation is still there even though I use the enemas. It could be driven by an unknown virus, high phospholipase producing bacteria, antibodies, etc....However, one can substantially lessen the symptoms by getting a good mucus layer down.

Post Edited (Horus) : 10/29/2007 6:37:13 AM (GMT-6)


damo123
Veteran Member


Date Joined Jul 2007
Total Posts : 713
   Posted 10/29/2007 7:44 AM (GMT -7)   
From what I've read accupuncute tries to re-establish the energy flow from the lungs to the colon which is blocked. Surely if energy is blocked then its about having too much energy in your body and not too little. This is my understanding.
2400 mg Asacol + 500mg suppositories as needed
Acidophilus
No Stress and a positive attitude (mostly!)
 
My colon appears to be acting somewhat normal (ssssshhhhh...don't jinx it)
 
 
 
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/29/2007 8:06 AM (GMT -7)   
Horus-- not to hijack a good thread, but are you getting the PC enemas made at a compounding pharmacy?  I have started emailing around to some pharmacies and did you need an rx?  I am currently inquiring around to have them made, but so far no luck.  It appears to me impossible to make ones own using liquid lecithin, because lecithin is completely water insoluble.
 
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


1s
Regular Member


Date Joined Sep 2007
Total Posts : 49
   Posted 10/29/2007 9:26 AM (GMT -7)   
mr. horus,
i dont claim to know anything, i am just presenting some thoughts i have had and what my doctor said in order to learn more about them. being stuck in a long stretch of midterms and architecture projects has made it impossible to sit and read medical journals like i was a few months ago
again im not assuming anything, just putting a thought out there for ideas.
please relax
i never suggested using hot peppers to do anything was just mentioning how one stimuli could provoke miltiple responses
but anyway thanks for clearing things up for me, and i will read your links and other posts when i have the chance
left sided
prescribed lialda
take herbal meds instead


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 10/30/2007 5:21 AM (GMT -7)   
Probiotic said...
Horus-- not to hijack a good thread, but are you getting the PC enemas made at a compounding pharmacy? I have started emailing around to some pharmacies and did you need an rx? I am currently inquiring around to have them made, but so far no luck. It appears to me impossible to make ones own using liquid lecithin, because lecithin is completely water insoluble.



I'm well aware that if you have it compounded that it can be expensive and a prescription is needed. That is why some have tried this phosphatidylcholine enema themselves. The water route is a bit tricky since
you need to adjust the PH so it won't sting. I find that if one has pan colitis that using water helps disperse the ingredients farther into the colon compared to the oil based fillers. Yes lecithin and water are insoluable and that is fine. One just has to make sure NOT to use too much water and hold the water as your electrolyte levels can be affected negatively. Since lecithin is fat soluable then mixing it in an oil base is fine for left sided colitis as the dispersion of the fluids is hampered somewhat because of the sticky thick nature of the stuff so it makes it harder to get it all the way throughout the colon.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/30/2007 8:24 AM (GMT -7)   
Thanks for the ideas. I am asking around to some pharmacies because it basically seems IMPOSSIBLE to get such a thick, semi-solid medium to flow through an enema's tubing. I have considered using olive oil instead of water, but suspect that the olive oil itself would be an extreme irritant. Any oilds you'd cosnider safe? Can you please expand on what you or using yourself to get it to flow?
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 


Horus
Regular Member


Date Joined Feb 2007
Total Posts : 190
   Posted 10/30/2007 12:24 PM (GMT -7)   
Probiotic said...
Thanks for the ideas. I am asking around to some pharmacies because it basically seems IMPOSSIBLE to get such a thick, semi-solid medium to flow through an enema's tubing. I have considered using olive oil instead of water, but suspect that the olive oil itself would be an extreme irritant. Any oilds you'd cosnider safe? Can you please expand on what you or using yourself to get it to flow?



You should use emptied fleet enema bottles instead. Extra virgin olive oil is not an extreme irritant. How much lecithin/phosphatidylcholine are you using per dose?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/30/2007 8:52 PM (GMT -7)   
LOOOOOOOOOOOOVE Extra virgine olive oil, I use it all over my body as a moisturizer, hair too, toe and finger nails, eat it everyday, it's so good for you and has many benefits, from my understanding it's a natural anti-inflammatory, anti-fungal and anti-viral...I even rub it on my perianal crohns skin tags and it's very relieving....helps heal bruises, cuts/sores quickly too.



:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 10/31/2007 4:55 AM (GMT -7)   
Horus,

Well, I haven't successfully made a PC-enema as of yet, precisely because I haven't been able to find any way to get it to flow. The liquid lecithin I bought, by Fearn, is extremely thick and gooey, like molasses. I have no clue what the proper proportion should be, to try mixing it with olive oil. I guess I'll just have to experiment. I do use a lot of olive oil in my food and for cooking, but I also know that if it gets down undiluted into my throat it can create a burning sensation, so that is why I assume it might be irritating inside the colon.

In an ideal world, I'd be trying the enteric coated PC, but as has been previously discussed on this forum, even though that was used in the small but extremely successful ("too good to be true?") clinical trial in germany, finding someone to make those for you is basically impossible. Wish I has gotten into the supplement manufacturing biz myself so I could make my own private stash.

Christopher
Pancolitis dx'd 1986, full med-free remission 88-97
Flaring or simmering ever since
10 20 mg pred, 100 mg Imuran
Probiotics (mainly Primal Defense)
Turmeric/circumin, various vitamins/minerals,
Low-carb version of Specific Carb Diet
 
 
 

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