Cant we all help them figure this out?

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Crabi

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Apr 2, 2021
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I was just reading some of these posts and it dawned on me, there is a common denominator among all of the postsers and responses, there is so many variants of both symptoms and possible causes that is the common denominator. Maybe we all write lists down of symptoms and let doc and researchers give us all theories, blackboard the whole thing, run it through a computer software program looking for basically winners, like a horse racing program, with all that data a answer or top couple hits would be clear. just a thought really
 
Common factor is, a damaged microbiome, yet there are many ways to damage it. Like antibiotics, low fiber diet, vit d deficit, high sugar intake, high saturated fat intake, obesity, smoking, emulsifiers, preservatives, artificial sweeteners, proton pump inhibitors, radiation therapy, and perhaps a few more.

I believe fecal microbiota transplants will be the cure, please keep up with my thread link below this post!
 
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I spent years trying to figure it out just for me. Forget about other people with different DNA and different predispositions. I can control what I eat, what I do, and what medications I take, but still I was not able to solve the equation. Maybe there is no solution? There are so many factors, delayed responses to what we eat, our body is constantly changing...
 
Your thinking is absolutely right, if we all team up we can absolutely have a go.

We may stop a big pharma wasting time and money working on something we Don't agree on.

We may offer scientists a point in a different direction.

We may help with funding and developing what we think is the case.


That is to name a few, there is a saying power of the people.

We now have the Internet.

People have solved and sped up many issues and problems.

It just needs some ideas inovation and some leadership and we can do something somehow.
 
I think this really could do something, lets face it there is a vast number of support for the microbiome, with tons of possible causes, but until we put them all together then math the hell out of it we will never break it down. Docs, and researchers do this same thing but over HUGE amounts of time, YEARS AND YEARS of research go into these things, we have the power of millions, and our brains are still more intelligent than any computer, but a good computer can crunch all that data segment by segment, this whole thing is a math problem i think. if feels like math is the way to both narrow it down and get to the end of the problem. but the raw data THATS US needs to be put together. there is NO DOUBT a common denominator, there always is. thats how math works. there will be a common denominator within the microbiome also, there always is thats math.
 
Appears it's already being done in part, your right though how fast will they do it and over how many years, I suspect many.

If that research would yield the answer to crohns, that is something that needs to be made much faster and completed in 12 months.
 
wildbill_52280 said:
Common factor is, a damaged microbiome, yet there are many ways to damage it. Like antibiotics, low fiber diet, vit d deficit, high sugar intake, high saturated fat intake, obesity, smoking, emulsifiers, preservatives, artificial sweeteners, proton pump inhibitors, radiation therapy, and perhaps a few more.
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This is why I believe the place to look is VEO IBD. Half of those variables would not come into play. A 5yo, or younger, that gets an IBD diagnosis would seem to be in its rawest form. So what is going on in those patients? Most likely its not smoking, diet, enviornment that is causing the issue, so the picture may be a bit cleaner.
 
I guess my main point was reading allot of posts, see so many variables, so many different problems with so many different people, I feel as if we are waiting for someone else to get funding or do the research for us, maybe a forum type board were each person could add symptoms when they first felt they got the disease, what cures they have, then because none of us should be sharing actual person blood types etc we could use a software program to piece it all together then math it, I for one am tired of waiting on other people to answer questions we could be figuring out on our own. we have millions of minds, we have millions of stories there is going to be a common source. I believe it is in the processed food we eat and the additives they use in food to make it stay fresh longer. seems to me it would keep bacteria or other disease fresh longer also, possible just extending the life of certain parts of the microbiome, maybe killing off other types in the gut allowing problem bacteria to flourish. antibiotics could be another source. they wreck your intestinal track each time you take them, i tried probiotics made me sick after a cou0ple months, i went to eating almond yogurt not sure if it helps but it tastes ok and it should be good for me.
 
4 milion people world wide with crohns, if just 1000 people decided they want to start there own research investigations and put $1000 usd in each that is 1 million usd. i dont know where to start and whats needed, but again if many people team up who have the disease it should point to one area where to put money what is needed and what to do.


And i agree if a covid vaccine can be developed in 9 months, by the same people building a crohns vaccine for 20 years something is wrong. oxford were helping in building that map vaccine for crohns, 20 years on, yet they had the first covid vaccine in less than a year.

Tell all the pharma companys and scientists, you cant go on holiday your kids cant go to school and you cant visit your friends or family or go and have any fun until you find a cure for crohns, we would be fixed by christmas lol.
 
westernbuddy said:
4 milion people world wide with crohns, if just 1000 people decided they want to start there own research investigations and put $1000 usd in each that is 1 million usd. i dont know where to start and whats needed, but again if many people team up who have the disease it should point to one area where to put money what is needed and what to do.


And i agree if a covid vaccine can be developed in 9 months, by the same people building a crohns vaccine for 20 years something is wrong. oxford were helping in building that map vaccine for crohns, 20 years on, yet they had the first covid vaccine in less than a year.

Tell all the pharma companys and scientists, you cant go on holiday your kids cant go to school and you cant visit your friends or family or go and have any fun until you find a cure for crohns, we would be fixed by christmas lol.
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This has been presented to Propel a Cure, and they were excited by the idea of patients getting involved. I was just speaking to someone about it this week.
 
Intersting i have never seen that site in all my years, have they been on here and talked to the people before? im interested to know what they are doing what they have done and what there future plans are and whats holding them up. looking at the people involved a lot of them are into map, and my gut instict always told me that is a waste of time.
 
This effort assumes that Crohn's is one disease. There is some solid evidence that it is several diseases that converge at a variable set of overlapping symptoms. So searching for the cause of Crohn's may be like searching for the cause of house fires. House fires can start in dozens of different ways, but they nearly all respond to the same treatment: water poured on by the fire department.

That I think is a better analogy for Crohn's. We each have our own fires burning in our guts that started in lots of different ways, some big and raging, and some low and smoldering. The gastros are the firemen applying a small number treatments that can knock most of the fires down to a smolder but can't quite put any of them completely out.
 
It does appear in different locations. And the one item "food" that causes most pain.

Everyone is different with what food they can eat, these differing issues do make it strange.


Current biologic medication is no where near targeted enough,

If you look at the famous Windsor Castle fire, it was just one wing they poured water over one wing not the whole castle.

Current gastros are pouring dangerous meds over our whole body not targeted with no true idea what they are doing. Or as you like pouring a bucket of water all over nowhere near direct enough.

Me personally I think there will be one main cause however this may need treating differently.

The immune system is attacking bacteria how and why we need to figure out.

But all patients all people with crohns if everyone does really good research and has an opinion then that becomes a great bit of the puzzle.

What options are there to research, what has been researched, and what do people think is the most promising area that should be researched.
 
how do we know this isnt a side affect of a medication? I know antibiotics wreak havoc in your intestines, i know lime disease was accidently created and then got out and there are other tick bites that make folks no longer able to eat beef. we have chemicals in our foods many are preservatives, the FDA regulates that, the same FDA who gave us baby powder, the same FDA that gave us cigarettes, the same FDA that gave us filitomide. All this may have nothing to do with Crohns or EVERYTHING to do with Crohns, but until folks put all the data together and grind down that research we will all sit here wondering what and when this thing will get figured out. It is my opinion the more folks that get involved the more data thats put together the more a a tactical math approach would certainly yield results. thats how math works. we have diseases and deaths listed in the top ten in America, some of those top ten we cannot fix, we can regulate or legislate to easy problems but thats it, this is one we can ll get involved in and make something happen.
 
“Crohns” and inflammatory bowel disease is the umbrella term
This happens in a lot of big diseases
Juvenile arthritis is similar (umbrella term ) but at least JIA has subsets defined ( although these change)
Way to many independent variables
Age of onset
Different known phenotypes based on age groups
Different disease paths
Genetics
Environmental
And the list goes on

Definitely different diseases for the under 10 crowd at diagnosis
How they respond to meds /disease progression etc is far different than adults (over age 25)
 
I believe we can do better than the hit or miss treatments that have now been around for 20 years.

Have you seen the don't checklist for Ozanimod? It reads like it's an SNL skit. To act excited that there is a new drug to treat UC is laughable.
 
Crohns was first detected in 1932 covid in 2020, covid has a treatemnt that is not to far from 100% effective in 2021
Crohns has treatment that is no where near 100% effective for long term remission in 2021.

I would say in the last 90 years the biggest breakthroughs in crohns are 1. Prednisolone 2. Infliximab

However there are other diseases that are very bad and severe that have had far more spent on them than crohns or covid and still have very little treatments.

Actually was checking out that find a cure page, can see they just uploaded a new video.



Looks like some of the questions in this thread have been answered, and looks like this year 2021 we may have some interesting news, the microbiome and c4 t cells

In my 20 odd years with crohns it feels like stuff is happening and there may be breakthroughs, however i was reading about diabeties the other day and im sure the same uni were saying 50 years from now to study the micribiome and find the cures, but i can find the articles.
 
I just know the more attention it gets the more folks that get involved the more the news talks about it, the more we as people push the more results we will get, they have a vaccine for the flu, the flu has been around since time, took them 18 months to get one out there. If crohns was first found in 1932 then holy crap folks we need to get talking and organizing, seems to me like crohns is spreading and more and more are getting it, its time to organize join forces get the media, when strong minds get together answers come out
 
Jbungie said:
This is why I believe the place to look is VEO IBD. Half of those variables would not come into play. A 5yo, or younger, that gets an IBD diagnosis would seem to be in its rawest form. So what is going on in those patients? Most likely its not smoking, diet, enviornment that is causing the issue, so the picture may be a bit cleaner.
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Good point, but many children are exposed to antibiotics when they are born, when they are still in their mothers womb, and even when they are 5 years old. Also, we inherit almost all our microbiome from our mothers, the lack of diversity in microbes can already be there. G.I infections and food poisoning may also destroy the microbiome if the infection is bad enough, this could bring on IBD too.
 
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wildbill_52280 said:
Good point, but many children are exposed to antibiotics when they are born, when they are still in their mothers womb, and even when they are 5 years old. Also, we inherit almost all our microbiome from our mothers, the lack of diversity in microbes can already be their. G.I infections and food poisoning may also destroy the microbiome if the infection is bad enough, this could bring on IBD too.
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It seems like its is information like this that could most certainly lead to a rooot cause or a cluster of root cause, I guess the questions is but why now? ok so thhey discovered it in 1932, awesome, but why 1932? every answer seems to have a question right next to it, I still think if we pool our resources and get this stuff mainstream we will find a cure, just yesterday they have announced they found another possible cure for cancer, I should have grabbed the link, although is not in trials the push is there. the biggest question is will be pharma companies actually try and find a cure? seems to me the only way they will look is if there is big money in it, or if they are pushed hard, thats were talking about it gets this moving,
 
Crabi said:
It seems like its is information like this that could most certainly lead to a rooot cause or a cluster of root cause, I guess the questions is but why now? ok so thhey discovered it in 1932, awesome, but why 1932? every answer seems to have a question right next to it, I still think if we pool our resources and get this stuff mainstream we will find a cure, just yesterday they have announced they found another possible cure for cancer, I should have grabbed the link, although is not in trials the push is there. the biggest question is will be pharma companies actually try and find a cure? seems to me the only way they will look is if there is big money in it, or if they are pushed hard, thats were talking about it gets this moving,
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Cancer is similar to IBD and other chronic diseases, so many variables that contribute. The treatments developed by modern science are useful, but in some cases , may not be necessary. it would be hard to build a business as profitable as modern medicine based on getting people to bed early, getting sunshine and exercise, eating a healthy diet, avoiding exposure to food additives and chemicals in the environment and sleeping next too close to electronics like fans and alarm clocks that disrupt the production of melatonin and deep sleep which is how our bodies heal.
Crabi said:
It seems like its is information like this that could most certainly lead to a rooot cause or a cluster of root cause, I guess the questions is but why now? ok so thhey discovered it in 1932, awesome, but why 1932? every answer seems to have a question right next to it, I still think if we pool our resources and get this stuff mainstream we will find a cure, just yesterday they have announced they found another possible cure for cancer, I should have grabbed the link, although is not in trials the push is there. the biggest question is will be pharma companies actually try and find a cure? seems to me the only way they will look is if there is big money in it, or if they are pushed hard, thats were talking about it gets this moving,
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First and foremost, science aims to collect basic facts around what it is trying to understand, following this process and doing this well, can be powerful when problem solving, but some facts will not be as useful as others, and some facts may seem pointless at first, and later on prove to be crucial to solving the problem. Another way to put it, science uses facts to create theories, which may lead to new facts, or final solutions. It can take a long time sometimes. Generally stated, if ones beliefs are based on first hand observation and experimentation, it's "science based". As opposed to beliefs based on anything else, like any random idea whatsoever, imagination is important in science, but good evidence is crucial.
 
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Crabi said:
It seems like its is information like this that could most certainly lead to a rooot cause or a cluster of root cause, I guess the questions is but why now? ok so thhey discovered it in 1932, awesome, but why 1932? every answer seems to have a question right next to it,....
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1932 happened to be the year Burrill Crohn published the paper describing the condition that still bears his name, but nothing particularly magical happened that year. The disease was certainly around long before that. For a long time inflammatory diseases of the bowel were lumped together into a catch-all diagnosis of tuberculosis of the intestine - sort of aligned with the MAP theory that is still hanging around to this day. Giovanni Morgagni, the famous Italian pathologist, described a disease that was almost certainly Crohn's back in the 1700s. And Alfred the Great, the Anglo-Saxon king who spent his life fighting the Vikings back in the 9th century, also battled an ailment that based on his symptoms was very likely fistulizing Crohn's disease. Going back even further, some have speculated that St. Paul's "thorn in the flesh" was a case of inflammatory bowel disease, although that is too long ago and the description too thin to provide any certainty.

The point is that Crohn's, like cancer, has been with us for a very long time. Modern technology is making a dent, but one thing the patchy and intermittent success of the current therapies has taught us is that, like cancer, there is no one-size-fits-all when it comes to Crohn's - certanly not with respect to treatment and almost certainly not with resepct to cause.
 
I think crohns will be more simple to treat than cancer, i could be wrong cancer is a disease of the blood it can spread and travel and take over the whole body.

Crohns is inflamation.

I think in just opinion when the exact cause is known it will be possible to make a tablet to treat everyone potentialy.

Like a car in we are much like cars, cars have got complex

But in a simple explnation, an exhaust or tailpipe its making a noise, car 1 some simple putty fixes it, car 2 putty wont work but some weld fixes it, car 3 wled and putty wont work as the hole is big and right on a joint so it has to have a new exhast.

3 cars all have same problem each need a differernt solution.

I actullay have crohns in my dudoneum and my ileum, the dudoneum is rare only 0.5% of cases.


Does the disease feel and act differenty in such a rare place, it gets narrow it gets ulcerd and i can tell when it gets inflammed, only difference you can really feel the ulcers in the dudoneum unlike the ileum, the locations are some distance apart, and i can feel the stirctures in both and feel the distance between them.

And going by my symptoms i failry confident when they know they cure this miracle medicine will work on both locations, its the same disease. just current meds are no where near targeted enough,

I think current meds are like trying to get into the middle of the channel tunnel with a tape measure from the outside and do some work.
 
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i think that knowing this has been around for some time goin way back is an even better clue, the ages i noticed being talked about clearly narrow down the possibles. I know they have found cancer long before they thought it could have existed. the folks responding just in this thread alone have narrowed down a ton of stuff, so is whats left what science is working on? or is it a person specific disease?, i think science would tell us although we are the same we are very different, even when it comes down to that that in itself also narrows down possibilities. ,
I watched my ex wife go through cancer, i was with her for every minute of every treatment, she got ABVD, its chemo, the B stands for bleomyacin, unfortunately Bleomyacin can cause an allergic reaction and turn your lungs into leather then it kills you, its called bleomyacin toxicity, her lips turned blue, i knew she was about to go, i rushed her to ER, she stopped breathing shortly there after, they intubated her, they brought hospice in to tell me she was done, the cancer had gotten her, they told me her symptoms, i went home to sit with my then 3 year old, thinking how do you tell a child there mom is gone, i put him to bed and went online, i read every single thing about cancer and ABVD, i ran across a medical abstract from a university called Johns Hopkins, i read about something called bleomyacin toxicity, then i knew what was happening, i downloaded everything i could, i went and paid for additional literature packed it all in a bag and went to the ICU, i asked all docs on her case for a meeting, and i explained free radicals, i explained the bleomyacin toxicity, and i also explained i found an experimental steroid treatment that has a very small chance of working but when it does they have a spontaneous recovery. The big wig from the hospital asked what part of the medical field i was in and i explained I have no medical back ground what so ever, he said we cant do that, i said Sir you brought hospice in they told me she was done, you told me her lungs had shut down and where hardening and there is no coming back and you told me the cancer had finally gotten her, I said now IM TELLING YOU , you must try this, they took all my paperwork, left for about 30 minutes cam back and said ok, that was over 15 years ago, she is still alive today with little to no after affects, she is cancer free.
Point is just when you think its never going to get fixed something out of know where happens and it gets fixed. How on earth i found all that stuff and they read it and agreed and she literally came off the respirator with in 48 hours and she had a spontaneous recovery. True story folks, in fact the docs after said she made the medical records, and what happened with her will be used to save other folks lives, they thanked me, i thanked them, thats teamwork
 
That is a great story Crabi. I think people tend to blame the Drs in cases like this, but in reality Dr's are very restricted on what they can do because of how are legal system functions and how people sue of every damn thing these days. If that case didn't work out, you probably could have sued the hospital and some idiot Judge would have agreed with you and made the hospital pay, which would have drove up the cost of their insurance and drive up medical costs for everyone. The judge would have said something like, you were distraught, and the drs should have known better.

This is the reality we live in. We have a world of people that don't want accountability anymore, everything that is wrong with you (not you, the metaphorical you) is because someone else did something. You aren't rich, must be racism, sexism, the elite, or just the system holding you back. This attitude is holding back medical innovation. IN the USA, our last president passed a right to try law. Seriously, why did we need that law? IF you are dying and want to take experimental crap to try something why, as a free person, couldn't you do that? Just crazy, that we needed to pass a law that says you can try to save your own life. Why did we pass that law 30 years ago?

Obviously, there is a ridiculous dangerous path could happen, we don't want pharma experimenting on healthy people under the umbrella of right to try.

I hope our medical/legal system changes and starts protecting dr's so they can truly start innovating and not just following a script.
 
Its exact same here in the uk, you can feel like you wish you had the keys for the hospital so you can go in and help yourself, would be so much faster quicker and better treatment lol.

On the other hand you can also feel like you may create your self bad karma for trying to do something off script.
 
Crabi said:
i think that knowing this has been around for some time goin way back is an even better clue, the ages i noticed being talked about clearly narrow down the possibles. I know they have found cancer long before they thought it could have existed. the folks responding just in this thread alone have narrowed down a ton of stuff, so is whats left what science is working on? or is it a person specific disease?, i think science would tell us although we are the same we are very different, even when it comes down to that that in itself also narrows down possibilities. ,
I watched my ex wife go through cancer, i was with her for every minute of every treatment, she got ABVD, its chemo, the B stands for bleomyacin, unfortunately Bleomyacin can cause an allergic reaction and turn your lungs into leather then it kills you, its called bleomyacin toxicity, her lips turned blue, i knew she was about to go, i rushed her to ER, she stopped breathing shortly there after, they intubated her, they brought hospice in to tell me she was done, the cancer had gotten her, they told me her symptoms, i went home to sit with my then 3 year old, thinking how do you tell a child there mom is gone, i put him to bed and went online, i read every single thing about cancer and ABVD, i ran across a medical abstract from a university called Johns Hopkins, i read about something called bleomyacin toxicity, then i knew what was happening, i downloaded everything i could, i went and paid for additional literature packed it all in a bag and went to the ICU, i asked all docs on her case for a meeting, and i explained free radicals, i explained the bleomyacin toxicity, and i also explained i found an experimental steroid treatment that has a very small chance of working but when it does they have a spontaneous recovery. The big wig from the hospital asked what part of the medical field i was in and i explained I have no medical back ground what so ever, he said we cant do that, i said Sir you brought hospice in they told me she was done, you told me her lungs had shut down and where hardening and there is no coming back and you told me the cancer had finally gotten her, I said now IM TELLING YOU , you must try this, they took all my paperwork, left for about 30 minutes cam back and said ok, that was over 15 years ago, she is still alive today with little to no after affects, she is cancer free.
Point is just when you think its never going to get fixed something out of know where happens and it gets fixed. How on earth i found all that stuff and they read it and agreed and she literally came off the respirator with in 48 hours and she had a spontaneous recovery. True story folks, in fact the docs after said she made the medical records, and what happened with her will be used to save other folks lives, they thanked me, i thanked them, thats teamwork
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That is a jaw dropping story. After that experience, I bet your perspective on life changed dramatically.
 
lukesjr said:
That is a great story Crabi. I think people tend to blame the Drs in cases like this, but in reality Dr's are very restricted on what they can do because of how are legal system functions and how people sue of every damn thing these days. If that case didn't work out, you probably could have sued the hospital and some idiot Judge would have agreed with you and made the hospital pay, which would have drove up the cost of their insurance and drive up medical costs for everyone. The judge would have said something like, you were distraught, and the drs should have known better.

This is the reality we live in. We have a world of people that don't want accountability anymore, everything that is wrong with you (not you, the metaphorical you) is because someone else did something. You aren't rich, must be racism, sexism, the elite, or just the system holding you back. This attitude is holding back medical innovation. IN the USA, our last president passed a right to try law. Seriously, why did we need that law? IF you are dying and want to take experimental crap to try something why, as a free person, couldn't you do that? Just crazy, that we needed to pass a law that says you can try to save your own life. Why did we pass that law 30 years ago?

Obviously, there is a ridiculous dangerous path could happen, we don't want pharma experimenting on healthy people under the umbrella of right to try.

I hope our medical/legal system changes and starts protecting dr's so they can truly start innovating and not just following a script.
Click to expand...

I been on the other side of that fence to, I got sick and dehydrated, passed out, smacking my head on the floor, woke up after 5 mins out cold, my head was hurting bad, went to my Doc, his NP saw me I told him i got knocked out for more than 5mins and my head was burning inside and i had a fever and nausea athe past couple days, found out later most folks only live 72 hours after a TBI, i made it 19 days he told me i had a sinus infewction gave me antobiotics sent me home, i called back my head still hurting and i was dropping stuff, the NP saw me again said tension headache maybe sinisitus, more antibiotics, two weeks later my head was pounding and i started seeing double, put one hand over my eye drove to urgent care told them what was going on they did a scan within 20 mins found my brain hd been bleeding for weeks inside my skull, in fact so much it pushed my center line of my brain over more than 10 cm, they said my brain was mostly in the left side of my skull, it felt like my eye was pushing out of my head. BUT DAMNIT i did everything my doc was telling me to do, turns out he had no clue what the hell he was doing, they packed me with my head not moving and sent me to the brain ICU, had no idea there was such a thing, the brain surgeon says i need to get my affairs in order, that scared me, he tells my family i have about a 2% chance of living through surgery and if I do come out i wont be the same person, I later find out that it took 16 titanium pates and screws to hold my skull together and they were concern as soon as they did a drain hole my brain would simply squeeze out thhat hole and kill me instantly. I made it through it against all odds, but that NP and my Doc were negligent, they went against everything they are taught, know what the NYS health department said? they said the NP and Doc did nothing wrong. yeh well i read allot about what they did and they messed up bad, my left side dont work right and my thinking is messed up and to top that off after i got hurt my now ex tells me im to messed up for her to deal with and leaves me to raise our child on my own while recovering from this nightmare, There is Awesome docs and awesome nurses all over the place, i ran into several that should be in prison, just a stroke of bad luck i guess. this all actually happened to me this is no internet story, and after all that i spent the last 5 years having gallstone attacks in the end it was a couple times a day, saw 5 different gastro docs, they all said eat more fiber, gave me different diet sheets, one actually ran blood tests, said i was fine, one told me to take cats claw bark lmao, i did though, i was in ER once with another GB attack i begged the ER doc to do a ultra sound on my GB he refused told me there was nothing wrong with me and to go see a stomach doc lmao, have a witness to him saying thhat also, one Gastro told me there were not going to do anything for me, no diet sheets no blood tests no stoll samples and then tells me I should go to somewhere else, i had 4 gastros decline my primaries reference, i told my Doc why did they blackball me? she says she didnt know but my case was very unusual, i had been misdiagnosed for so many years, i think they are all afraid of me to be honest. I asked one gastro after my GB failed what am i doing wrong, why is docs not treating me and now twice i almost died, he said he thought someone else would have done all those tests by now. this stuff is true folks, and whats the moral of all this? allot of times its up TO US, not anyone else, WE have to fix this WE have to get this rolling, WE have to push this because other folks simply dont see it as a priority. I may have had some bad luck with docs but I still know for a fact there is a ton more great docs that docs that dont give a crap, we just have to find them. I finally got a good PCP, and a gastro doc who has no personality at all, but damn he is thorough, he is running every single test there is. My PCP is also an internal medicine doc, she has been awesome, other than every single visit she wants to stick her fingers in my but lmao. She is awesome though
 
Jbungie said:
That is a jaw dropping story. After that experience, I bet your perspective on life changed dramatically.
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I think it was after my GB problem and this thing going on now thhat changed my view on life, all i can say is live every day to its fullest, dont waste even one minute, always look forward, never forget the past but dont live in it. and most of all, above all else in life help other people, i have made a HUGE change in my life and it is simply to help anyone i can in any way i can. why? the only thing no one cant take is your word and your honor, class, morals, LIVE those so you can set an example for everyone to see and remember, I know my child is a better person than me, i know he will be someone great for all of his life, and hopefully he learned from my mistakes. I do know this, IM HERE FOR A REASON, i am still alive for something, i should have died 5 times in my life and folks have always said im here for a reason, i dont know what it is BUT I HOPE TO LIVE LONG ENOUGH TO FIND OUT
 
Crabi said:
I think it was after my GB problem and this thing going on now thhat changed my view on life, all i can say is live every day to its fullest, dont waste even one minute, always look forward, never forget the past but dont live in it. and most of all, above all else in life help other people, i have made a HUGE change in my life and it is simply to help anyone i can in any way i can. why? the only thing no one cant take is your word and your honor, class, morals, LIVE those so you can set an example for everyone to see and remember, I know my child is a better person than me, i know he will be someone great for all of his life, and hopefully he learned from my mistakes. I do know this, IM HERE FOR A REASON, i am still alive for something, i should have died 5 times in my life and folks have always said im here for a reason, i dont know what it is BUT I HOPE TO LIVE LONG ENOUGH TO FIND OUT
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Right now I am in a vicious cycle of "why us" as my 5yo son was diagnosed with IBD out of the blue in January of this year. He is doing well, I just cant stop thinking about life prior. He's on Remicade and Methotrexate, and for the most part is symptom free right now, and I am still in a constant state of worry. I've barely been sick a day in my life, so this is all foreign to me.
 
Jbungie said:
Right now I am in a vicious cycle of "why us" as my 5yo son was diagnosed with IBD out of the blue in January of this year. He is doing well, I just cant stop thinking about life prior. He's on Remicade and Methotrexate, and for the most part is symptom free right now, and I am still in a constant state of worry. I've barely been sick a day in my life, so this is all foreign to me.
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its very hard to take at first, any of these out of the blue diagnosis from Docs, one day your limping along life seems good then BAM, you got something that will make you see docs the rest of your life. The GREAT news for crohns is it has become manageable through medical care. I watched my fishing buddy Gary get eaten alive by Crohns, of course that was almost 15 years ago, and it started another 5 before that, back then it was cancer treatment, it was not fun to watch. the outlook now days is so much better, you can read thousands of stories of folks who have lived with this their whole life, with little to no problems. in remission for 10 15 and 20 years, and the new meds and stuff like microbiome research may finally end this thing or at least figure it out. I cam in this forum and read about new treatments and stuff and I just felt there is an answer to this, i dont know why, but there is a answer to this disease, its in here, its in us, we just have to figure it out. You can be thankful they caught it now, and he is in treatment, once they can get it into remission and maybe hold it it will change everything. and your son is young, I bet he gets to see the cure in his lifetime.
 
Jbungie said:
Right now I am in a vicious cycle of "why us" as my 5yo son was diagnosed with IBD out of the blue in January of this year. He is doing well, I just cant stop thinking about life prior. He's on Remicade and Methotrexate, and for the most part is symptom free right now, and I am still in a constant state of worry.
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I can imagine things are very tough. I went through a "Why me?" phase when I was first diagnosed. My anguish and worry would have been ten times worse if one of my daughters had come down with Crohn's instead of me.
 
When does everyone predict the cure will come?

My prediciton is if there is not big break throughs in the next ten years, then we are looking at potentially 50 years from now.

That new alzheimer's drug that was approved yestarday, it was world wide news.... they know why alzheimer's happens, they made a medicine to directly treat it, first alzheimer's medicine to be approved in 20 years..

Yet they dont think it will have much sucsess in people now it can be used in freely.

After seeing covid be sorted so quick, that was just a reality check for me to how slow things can progress.

In one way i think covid may have given many people worldwide hope that things can be cured fast, including all us fellow crohns sufferes here, and parents and releteves and friends of people with the condition.
 
“Crohns” Adults subtypes (more than a few ) probably a cure for one or two versions not all
Since the numbers who are affected are much larger in the group as a whole (maybe 25 years )
Pediatric probably not since they only look at adult first then kids much later (maybe 40-50 years )

very early onset crohns (less than 2% of the pediatric group ) ages under 8 at dx
Not happening within 50 years since that is more of a case study thing not a large enough population to warrant drug trials on any level ever
 
my little penguin said:
“Crohns” Adults subtypes (more than a few ) probably a cure for one or two versions not all
Since the numbers who are affected are much larger in the group as a whole (maybe 25 years )
Pediatric probably not since they only look at adult first then kids much later (maybe 40-50 years )

very early onset crohns (less than 2% of the pediatric group ) ages under 8 at dx
Not happening within 50 years since that is more of a case study thing not a large enough population to warrant drug trials on any level ever
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Thats unless the public and the media get involved, AND US, watch the news folks, its done every single day on there, I think the more we talk about it the more attention we can get on it the more it will be resolved, there are things being focused on right now that dont hurt half as many as crohns do, but thats because they got support, they kept working at it.
 
I wonder how many people there are world wide spending a full 8 hour shift 5 days a week investigating the cause of crohns so that medication can be developed to target the cause.
 
westernbuddy said:
I wonder how many people there are world wide spending a full 8 hour shift 5 days a week investigating the cause of crohns so that medication can be developed to target the cause.
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I would bet there is not as many as you think there are, in fact I would have to bet with crohns not being as big a name as the flu or illnesses like cancer that very little is all Crohns research. Im sure there is some folks working on it, i think we needs lots more but thats just my opinion
 
I think the best bet right now are those drug development projects that aim to stimulate the immune system rather than suppressing it.
I know of one such project, QU biologics SSI (Specific Site Immunomodulator).
From what I understand it sounds somewhat similar to a vaccine, inactivated e-coli bacteria are injected that teach the immune system to fight pathogenic bacteria. It appears it has shown good results with Crohns.
For my part I think an infectious trigger plays a part, as well as environmental factors, like Wildbill explained earlier in this thread. I wonder, though, if the proper diet, good rest, and stress reduction can help the body restore the microbiome without the need for FMTs?
I got a serious infection wheh I was around one or two years old, several antibiotics treatments, and througout my childhood I would regularily get very sick and vomit for days. Symptons alot like a stomach infection. Then at 16 when I started smoking, left home and started eating poorly, and started to stress about education, exams etc. - Crohns came along.
 
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Glad to see your on this topic Waldo.

I think this is one area crohns patients need to study and discuss as per the topic I guess.

4 million with the disease world wide and yet very few appear to research it in great detail and share there thoughts online.

I was reading this not so long ago.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856849/

I found it fairly mad how they have not yet studied if musoca healing yields a better outcome for patients.

Surely this would be common sense, anything that's repaired in life lasts longer and the better it's repaired the longer it lasts.

There is actually someone on this forum who was part of the qu biologics trial.

As far as I'm aware there doing good, but another detailed update would be great.
 
The more we talk about and share information, the more docs and folks get involved some of us will be around when they get a handle on this disease, i know whats going on with me i feel has allot to do with how many times i been plastered with antibiotics, my testing so far to date has said no crohns but my symptoms unfortunately match this stuff very close. i had a few close to death issues and both times i was on all kinds of antibiotics, i had the swine flu also and was on a breather 4 times a day for 3 months so i could breath again. all these little details may add up to an answer
 
Have you actually had say a course of prednisolene 40mg a day for 8 weeks crabi, just to see if any crohns meds make any difference to you.?
 
No, only thing they every tried was cats claw bark lmao and murilax, murilax hurt but tat was when my GB failed, i wouldnt take cats claw bark. i should try it but i have not
 
Crabi, I hope you will eventually get a diagnosis. Even though Crohns, UC or similar diagnosis are not great to have, at least you will know what the deal is. Have you had your Fecal Calprotectin measured? Its a fecal matter sample you deliver. Its a widely used indicator for the type of inflammation seen in Crohn. More precise than CRP or orocumocoid (previously used biomarker).
Westernbuddy, its a really interesting article about mucosal healing, especially how inflammation reoccurs at the same location when biologic treatment is ended. That tells us these drugs just suppress whatever is going on rather than treat the root cause.
We really badly need meds that goes beyond that. I recall my GI has argued once that there is no infection per se, its just the immune system acting up for no reason (autoimmunity). But I have never seen studies that prove our immune systems make antibodies against our own gut lining, so I don't think its correct to call it autoimmune. (kiny has written about this I believe).
 
westernbuddy said:
.
I was reading this not so long ago.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856849/

I found it fairly mad how they have not yet studied if musoca healing yields a better outcome for patients.

Surely this would be common sense, anything that's repaired in life lasts longer and the better it's repaired the longer it lasts.
Click to expand...

They have studied mucosal healing and it does yield a better outcome. The article you were reading is 14 years old. A lot of research has been done since then.

A big topic for discussion and research back when that article was published was whether treating a patient to achieve "mucosal healing" - which is defined as having the appearance of normal or healed inner lining of the bowel when viewed via colonoscopy, was better than treating to achieve "clinical improvement" - defined as reduction in or relief from disease symptoms. Clinical improvement had for many years been the prior goal of most Crohn's therapy, but GIs were beginning to think that an overall better long-term outcome could be achieved by shooting for mucisal healing rather than just relief of symptoms.

The research subsequently showed that mucosal healing was indeed the better target. But that's not the end of the story. More recent research has shown that an even better target is mucoal healing combined with microscopic healing - that the diseased bowel improves to the point that it not only looks normal to the eye upon colonocopy but that tissue samples look normal under the microscope as well. That tends to be the ultimate goal for most therapy today.

It used to be thought that if you cured the symptoms the treatment was a success. That's the goal of the patients.' They want to get rid of the pain, bleeding, and diarrhea. But now GIs know that's not enough. They have to keep pushing to achieve both mucosal and microscopic healing. And once the patients get to that point you have to keep them there lest the disease come creeping back. You have to keep up with, and if need be adjust, the therapy to maintain the patient in this healed state.
 
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And that must be quite hard to keep up with, as current meds still are not quite right.
Buy let's hope more big advancements come soon and fast.

Does anyone know how much more % potent iv vs oral steroids are I can't find any research on this.

Iv hospital steroids for a flair and duration to work.
Vs oral steroids for a flair and duration to work.

And how much more potent are iv vs oral.
 
I do want to state meds now can get complete mucosal healing
My kiddo has been on Stelara since 2017 plus methotrexate
Intestines are pink and healthy down to the cellular level (no ulcers ,no redness , no inflammatory changes)
Because of meds
Improve care now (icn) also is a very very large group of pediatric Gi hospitals that agree to share information on what works and what does not
Improving outcomes of kids rapidly
https://www.improvecarenow.org/
 
Sure im very much aware of mucosal healing offered by current meds, i just think current meds are still a long way of treating crohns with minimum side effects and risks, current meds are targeting the immune system in to much of a broad unkown spectrum still i think.

And we are limited to what is on offer and they dont last long before a relapse in some instances.

And they often have to be combined with other drugs to stop them wearing off, supressing the immune system from preventing very other severe problems.
 

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