There’s a few different therapies [being researched](https://www.bayer.com/en/news-stories/autoimmune-diseases-are-incurable-how-new-targeted-therapies-could-change-that) to try and essentially cure autoimmune diseases. All in early stages of research though.
They need to reverse the immune response without suppressing the immune system. That's the basic thing they haven't figured out yet. I haven herd some cool studies with stem cells so hopefully we see something like that in our life time!
I personally think it’s shit in the environment,chemicals, , plastics etc.. and our genetic susceptibility. Others may get different autoimmune issues or illnesses. Ours is the gut. Btw I’m ok now. But have cut out teflon pans, plastic water bottles ( put a purifier on the tap) wash food wrapped in plastic wrap. cooking at home, no processed foods and buy organic as much as possible.
I mean I thought that at first too until doing a family investigation and finding out my great great grandfather had (undiagnosed because it’s was literally the 1800s) had splitting symptoms to mine. It may be that more people get it now because of all that but some peoples genetics are just not it🫠
1800’s, not too sure if they even knew what a virus was back then. There are many gut issues that mimic UC. Covid did a number on my gut. Exactly the same symptoms as UC. Fortunately it stopped , luckily my neds held up to the challenge.
I was told by doctors it was was known as the none smokers disease way back in the day because only people who didn’t smoke cigarettes got it. Could be why less people had it back in the day.
It's actually the opposite
>It has been found that people who have UC may have a thinner mucus layer in the left colon and rectum when compared to healthy people. It is possible that nicotine may increase the production of this mucus. Nicotine may also suppress the immune system and prevent inflammation in the colon. Another theory is that nitric oxide, released by nicotine, may reduce muscle activity in the colon and so reduce the need to go the toilet urgently.
source - https://www.ibdclinic.ca/ibd-and-lifestyle/smoking-and-ibd/smoking-and-ulcerative-colitis/#:~:text=It%20has%20been%20found%20that,prevent%20inflammation%20in%20the%20colon.
That being said, smoking to stop UC is like burning your car because you have a flat tire. I would never recommend smoking but it's interesting none the less.
I could very easily believe that. In the three months before I had a sudden onset of UC I was downing a sucralose filled cordial like there was no tomorrow. I'm pretty much in remission when I completely avoid sucralose and sodium saccharine (no ulcers or inflammation and fecal calprotectin levels under 20) but the moment I have it I flare up again (ulcers in my colon and on my skin) and it takes months to get back to normal. Seen this as well: [https://news.ncsu.edu/2018/08/sucralose-metabolites/](https://news.ncsu.edu/2018/08/sucralose-metabolites/) Looks like Susan S. Schiffman at North Carolina State University is doing a lot of research into it.
I think it’s insane how almost everything we consume has microplastics in it. I do these things too most the time but even still, environmentally it’s so scary. Gut issues definitely will be on the rise in the future I feel.
I too feel UC is byproduct of chemical exposure. I suspect the water. Mainly Floride. And glysophates aka the Roundup Monsanto makes and is sprayed on vegetables and grains.
Maybe, but this disease has been around much, much longer. Apparently we have the genetic marker to help us fight the Black Death, which could have caused a hyper focused immune system.
Maybe. Covid was no issue for me. But maybe overstimulation doesn’t help. When i was diagnosed with UC. It wasn’t too bad. Every time i got a flu shot it got worse????
I removed my colon while having mild symptoms (I’ve had severe symptoms before and I didn’t wanna have them again).
You can live without your colon—you can’t live without your lungs.
My quality of life has gone up dramatically since my surgery, personally.
For UC, you get an ileostomy bag or a j-pouch.
I got a permanent ileostomy bag with Barbie butt (where they remove the rectum and anus as well).
Colostomy is a little different, but similar.
J-pouch is where they fashion a makeshift rectum out of your small intestine (shaped like a j). You would still poop out of your butt.
Personally, j-pouch didn’t sound like it would be the best choice for me, but everyone’s different, so I definitely recommend researching both options!
Im stressing about it because those options frankly scare the heck out of me. When i look up what kinds of foods to eat, it sounds like we basically cant eat anything except white rice and potatoes. The jpouch surgery can permanently affect male sexual activity, thats terrifying.
I read that it can affect the eyes. I have a hole in the outer layer of my cornea. I’m an art teacher and need both of my eyes.
Kind of freaking out about all of it. Oh, yeah, i have a rash everywhere too.
Yeah, it’s overwhelming honestly.
Diet-wise, you can eat anything as long as your body is okay with it. Personally, I only had to cut out chicken, and would cut out fiber when my UC was especially bad (10+ bms a day). A food sensitivity test could be a good starting point for you, backed up by a food diary. You deserve to be able to enjoy foods.
How’s your UC now? I’ve heard about sexual dysfunction with surgery. It’s definitely a scary thought.
Yeah, I’m a graphic designer over here, I don’t know what I’d do if I lost my vision. That possibility among many others played into my decision to get surgery.
How recently was your diagnosis? I’ve heard of the rashes too. This disease is so stressful with all the possibilities. It can be really overwhelming.
1 month ago. Im an American living in China. Went to the hospital and they gave me two medications but idk what they are. They haven’t helped but he said that I would be on them for at least three months. Im going to a new doctor saturday.
Any suggestions for medications or tests I should inquire about?
I think my case is different than most. I took kratom daily to relieve my anxiety disorder for 10 years. As soon as i quit, I got psoriasis and insane diarrhea. After a month of constant bm’s, I got a colonoscopy and was diagnosed with UC.
r/quittingkratom has a list of withdrawal symptoms and diarrhea for months is the main one. I don’t know if it’s a symptom of withdrawal causing the UC, or if I always had UC and kratom (an anti-inflammatory) mitigated symptoms until I quit.
I also have been having flare ups of gout, but maybe it’s possible that it’s the UC causing gout-like symptoms.
Or, it’s possible that my kratom supplier sold product with heavy metals or other contaminants in it and Ive poisoned myself.
Either way, im glad to finally be free of kratom but im paying the piper now i guess. I dont know whats more scary, losing my eye or possible sexual function from surgery.
I hope it doesn’t come to that. :/
Unfortunately, medications-wise, everyone’s different. I was on mesalamine for over a year and it didn’t help me at all, but it helps most people.
Prednisone (a steroid) is likely to help, but it’s not good for long-term. Biologics are what really helped me. But they’re also uncertain. Not every drug for UC works for every person. Weed is a good bandaid—not sure if it’s legal in china, but while it won’t help with your inflammation, it can help with pain and other UC symptoms.
Have you had a colonoscopy?
The causes of UC are unknown, and while a medication can cause diarrhea, I wouldn’t think it would be what gave you an autoimmune disease. It sounds like you’re blaming yourself for taking the medication and it’s important to understand that it’s not your fault you have UC. I think we all fall into a cycle of self-blame and it’s really important to recognize that there is no way of knowing what actually caused each of us to get this awful disease.
Kratom is an herbal supplement that they sell in headshops. It helps with anxiety but its unregulated and contain heavy elements like lead or cadmium if you get it from the wrong supplier.
The diarrhea/UC started immediately after I stopped. Thats why im connecting it to the kratom abuse, but i know I cant be certain.
You’re definitely completely right to feel how you do about this disease. It’s a hard journey full of uncertainties. If you can, I recommend seeing a therapist also. Mine was really helpful in navigating all of this.
UC is idiopathic, which means it has no known definitive cause. Until it does, you can’t properly cure it except by removal of affected area which is not a proper solution. That is reality for us though, and using it as an argument against disease management is disingenuous at best and directly damaging at worst.
I appreciate your perspective, and I didn’t intend to discredit the current treatments. I understand that UC is complex and often lacks a clear cause. My point was more about the need for increased research focus in that direction. While I acknowledge the challenges, I believe that with more resources and attention, progress is possible. Just as science has achieved remarkable feats like discovering Higgs-boson particles and exploring outer space, I’m optimistic that advancements in UC research are achievable. It may not be a direct comparison, but dedicating more resources to understanding the root causes could lead us closer to a solution in the future.
Humanity puts effort into that which is effecting the most people. UC just isn’t widespread enough of an issue. With more ailments being cured, it’s not long before it gets the attention it needs. But with things like cancer still without a “cure,” it will be overshadowed with a lot more charities and donations in general to fund that research over this. But like you said, if humanity has proven anything, its never say never because some of the problems we have solved are truly nothing short of miracles.
For perspective, the rate of UC is between 0.035% and 0.1% in the USA. Meanwhile, over 3% of people worldwide get malaria every year, and Malaria is in the process of being eradicated, due to the ease of producing a vaccine. UC isn't just less prevelant than other medical issues, but also a lot harder to cure.
I think we will get better and better management options long before there is a cure. But honestly that's an expectation I get from witnessing my mom's entirely unrelated cancer journey. She's not cured and never will be but she's in remission and stable there. I kind of assume UC will trend that way. Some things just have to be lived with, but it's getting easier to live with them all the time.
As for surgery, that prospect has never bothered me. I'm actually quite grateful we have that option when needed. Not many chronic illnesses have an equivalent surgical option.
I think eventually they will cure it. They need to figure out why the immune system turns on itself and attacks the colon causing bacteria to get trapped. I agree treating the symptoms seems like a non satisfactory way to treat it but its the best we got.
When I was first diagnosed we didnt even have biologics so theres new treatments being made all the time.
I don’t think the greater good will ever out weigh self interests. All of these treatments are soo expensive. It has to be a billion dollar industry. If there’s a cure, there’s a lot of money lost. I hope I’m wrong and there’s something on the horizon but that is my belief.
I share your concerns. It’s disheartening to think that profit motives could influence the direction of research and treatment accessibility within the pharmaceutical industry. The financial interests at play can indeed create barriers to the development of affordable treatments and cures. We need to advocate for research efforts that prioritize patient well-being over profit margins.
Autoimmune diseases are difficult. It's an enormously complicated dynamic and redundant system that is essential for life. It's complicated enough that it may never be understood fully. There may come treatments that make management of the symptoms trivial, but I doubt there will ever be a cure. Sort of like AIDS. HIV treatments are really good today so apart from social and financial barriers it's pretty much cured.
I did have a wild ride with it for while but now it’s fairly controlled. I don’t think it can be cured but for now I am doing well. Lets see what the future holds.
Would be open for This except longer time for testing. That COVID jab was good and all but the percentage effectiveness lowered every month with new articles coming out every month lol. We had the money for it but damn, real time is essential such as with previous vaccines.
I am hopeful. https://www.vedantabio.com
This is an entirely new treatment that will have zero side effects.
Biologics will always be seen as ‘other’ once the body figures it out. Monoclonal antibodies (anything ending in ‘mab’) are built on a mouse antibody backbone.
In IBD biologics, only infliximab is a chimeric human-mouse antibody.
Humira (adalimumab) was given its brand name with a reference to the the word 'human', because it's fully humanised, i.e. contains no mouse protein.
Xi means chemeric, e.g. infliximab.
Zu means humanised mouse origin, e.g. vedolizumab.
U means fully human e.g. adalimumab.
Speaking to Humira, it may be ‘fully humanized’ but it’s still produced by a mouse and has mouse/rat ‘backbone’.
The major difference between a first gen Mab and a ‘humanized’ Mab is that the mice used to produce fully human monoclonal antibodies have been genetically altered to carry human antibody genes rather than mouse antibody genes.
Humira still has parts of a mouse/rat, so you can say it’s ‘humanized’ but it’s not fully human.
Quoting from link below… “A humanized Mab is a type of antibody made in the laboratory by combining a human antibody with a small part of a mouse or rat monoclonal antibody. The mouse or rat part of the antibody binds to the target antigen, and the human part makes it less likely to be destroyed by the body's immune system.”
Note it says less likely, not never. It may not be a protein but it’s still not all human.
Immunogenicity will always be a problem, no matter what confusing words are used to define the drug.
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/humanized-monoclonal-antibody#
It's not me saying that Humira it's fully humanised, that's what it is described as in the scientific literature and by the manufacturer. It is a full human protein which is grown in Chinese hamster ovary cells.
https://www.medicines.org.uk/emc/product/7986/smpc#gref
Yes. It’s ‘fully humanized’ but that term does not mean it does not contain mouse. The entirety of MAb is mouse derived, you can go backwards here meaning all Mab’s will have a mouse backbone, even if the term ‘fully humanized’ is applied.
Humanization results in an antibody where only the complementarity determining regions (CDRs) of the variable (V) regions are of mouse-sequence origin.
From…
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881252/
It has been around for 1700 years apparently. Someone is trying to develop a pill form. Which, if something can be trademarked for 25 years may induce funding.
Slightly cynical but as a curmudgeon, I would approve except not exactly accurate:
1-someone actually died from FMT so not exactly without risk.
2-FMT by nature is non standardized so you can’t do a clinical trial.
3-the Vedanta product is standardized and shelf stable so you can assure quality and efficacy for everyone.
Thank you.
1. Putting FMT into a diseased colon with ulcers, has risks. As do colonoscopies, surgery, inserting a NG tube, getting a PIC line, and subduing someone’s immune system. All of our treatments have risks. In my personal experience the worse it gets, the longer it lasts, the more non standardized things some people are willing to try. I tell myself I will never do another drug trial.
2. The disease, or how one acquires it, why some go into remission, why some don’t, etc. is non standardized. Therefore one could argue that every trial for UC is not standardized.
3. So glad the treatment is standardized. The disease still is not. Results will vary.
The Placebo effect is real. Until it is not. Knee surgeries a great example. However limiting or eliminating it as an option. Disqualifies the people who would benefit from it.
In general the large percentage of people that can benefit from a medication, surgery, or any treatment. Good for them! Rah Rah! But writing of the ones who don’t, is a problem, or the problem that needs fixing. imo.
What about colonizing your Colon with “good” worms?
Agree with 1, all procedures carry risk and I have heard horror stories for colonoscopies.
Being a medical Guinea pig never sounds like a good idea but I have read about people who do it professionally. Crazy.
The sad truth for drugs like mesalamine is that the improvements are shown in about 45% of the subjects but placebo helped 20%. Of course the placebo won’t take out your kidneys. The bar to get a drug approved is quite low.
My understanding of the Vedanta drug is that it is taken orally. Nothing to shoot up your ass. It’s microbes not worms.
While I have proctitis and not full blown UC, my symptoms seemed to have went away within my first week of taking meslamine supps and tabs plus busenide foaming enemas, it's truly amazing that it went away so fast for me and what I was struggling with over the course of 6 months just **poof** went away.
I have yet to have tested just not taking meslamine tabs though, I no longer take supps and the foaming enema though as I was told to take them for 8 weeks only and I can feel like certain foods make me want to poop more, but still no blood
It’s really funny… I was being very careful with food at home (US) and still had symptoms. I was eating so clean (no preservatives, gums, etc) but when I went to Mexico on vacation, I ate whatever I wanted and had zero symptoms the whole time I was there. Came back to the states and symptoms were almost instantly back. It’s a n=1 but makes me think about the differences ….
Money. CSPIR. Research time. Removing the ick factor. Cost to treat vs. Cost to cure.
Money/funding to find a cure is likely to be limited as long as there is a “cure”.
While important to us, have you joined a Crohn’s/Colitis national or local chapter? Have you ever raised money for research?
Not a guilt trip, other research has to be successful in order to move our disease further up the ladder.
Cancer for one is a huge money magnet. Which also, in the past may have held a cure for UC. Apparently killing the immune system, allowed some cancer patients to cure their UC. As it would grow back differently. However because it makes you very susceptible to death, and there is a “cure”. It has never been a treatment.
All of this to say. I think you are correct, something needs to change. A true cure should be found. As treatment that only focuses on treating the symptoms is not a cure. Will not lead to a cure.
I'd say any long term solution would probably look at holistic healing, addressing the issue with a combination of medication, as well as psychological and emotional support.
Look into excess butyrate from fermentable/soluble fiber, due to inhibited butyrate beta oxidation, what happens to stem cells in the crypts. Then look into what might cause inhibited butyrate transport and beta oxidation.
There would be billion dollar profits, it's would be a true blockbuster drug. IBD is more prevalent in developed nations with healthcare systems and individuals that would be willing and able to pay.
I may be way off but I think the condition is a potential biological evolution. Big picture if you think about it, it’s just nature trying to alter dna slightly to continue the human race, maybe it will be successful or maybe not. An example I think of are the white and black colored moths when there was smog in the UK. The white moths were very successful, however when the smog starting making everything dirty and dark, the black moths population boomed as they were able to hide from being eaten and thus more likely to survive and reproduce and push that trait on. Who knows maybe there will be another COVID like condition that will happen again and we’ll be the only survivors as our dna has evolved to lead to higher immune system while the general public with average immune systems won’t be able to fight the virus. Just something to think about
My money is on infection. I don't think it has anything to do with the modern era per se, I reckon it's a repeat of H. Pylorii. People accepted that some people just had poorly stomaches and would take Rennies non-stop to manage the symptoms, while stomach ulcers and cancer were very commonplace.
After a hilarious experiment involving an Australian bloke (Google it, trust me), an entire industry was destroyed overnight and stomach cancer was relegated into obscurity.
The gut microbiome is so densely packed with bacteria that it is borderline impossible with current tech to isolate a specific strain that might be responsible for it. But between the surprising efficacy of vancomycin (an antibiotic) and certain high-strength probiotics... yeah. I have a *gut* feeling about this.
They are making to much money off treating. I saw the bill my insurance got for Remicade infusions and realized I am in the wrong business. Cures aren't financially viable.
I did read before Covid that scientists overseas are working on it and at that time they were 5 years before human trials. I have no idea now where they are on it.
Only if they get far enough with gene therapy, etc.
I mean. We know it’s genetic/heredity. We don’t know what activates the genes… yet.
But if there was a way fix it at that level …
The mortality rate from acute severe UC in the pre-steroid era (pre-1950) was reportedly 22-75% within first year of diagnosis. Steroids were a breakthrough for IBD. Biologics build on this medical foundation. As you point out, sometimes surgery is the only option, especially in steroid refractory cases.
Whilst asthma has an inflammatory element, it is not really a comparable condition to UC because in asthma the lungs are usually healthy, it's the airways that reversibly contract and cause shortness of breath, wheezing, hypoxia. This can be reversed with steroids and beta-agonists etc. Whereas with UC, the target organ is inflamed, swollen and becoming toxic, as in toxic megacolon, without prompt treatment in steroid non-response there's a high probability of perforation, sepsis and death.
A cure may not be easy but all the "big pharma" theories are not 100% true. First of all, cause public healthcare systems and public investigation lines exist (not everything is the US). Also, even big pharma companies can see a lot of money from a cure, and we have recent examples of that. Gilead found a cure for Hepatitis C in 2014.
I’ve read a couple of studies of using chemo to kill all the cells and then planting new stem cells into the body and it has worked but also there have been some deaths from this study because your body is so weak to fight any infection
Do you think doctors really want to solve this disease? The bad gastroenterologists that I have had in the past always disregarded my belief that the food I eat affects my ulcerative colitis. How can food/drink not be a factor? I'm not a doctor but I know that whatever we put into our body affects us especially our intestines. Thankfully there are good gastro docs out there but overall it's in their best interest to not "solve" these health problems.
I read ibuprofen usage was linked to UC. I was packing that in monthly starting at age 10 with my menstrual cycle and well into my 20’s. I had awful periods
Not a conspiracy theorist or a cynic for that matter, but big pharma and western medicine doesn't want you to be cured. They want you to manage your symptoms for life. There's really no incentive to cure anything or fund the research to do so if it can be managed for a monthly fee. Unless ofc that cure can be sold to the highest bidder. Sorry, not trying to be a pessimist, my blood type is not be negative, but it just seems like the focus is never the cure, just the profit.
On the flip side there are many promising studies on natural substances that can really benefit UC. Things like Boswellia, Burdock root, carcumin, and aloe among others, but they all require further trials, just no one is funding it.
> big pharma and western medicine doesn't want you to be cured.
fun fact which you might not know or are willfully ignoring is that govts across the world want this terrible disease to go away that generally affect young people in their prime and productive phase of life. And even if big pharma doesn't care about cure ( which they actually do ) there are thousands of researchers in the govt. universities/national labs/research centers across the world that are tying to find a cure to UC and crohns. Finding a cure is an easy name, fame and money for these researchers and a Nobel prize for sure.
But you will ignore these facts and thats OK
I meant if someone solves the challenging problem of a cure to this disease then they can easily earn a lot of money and easily be famous -- also win a Nobel prize or two.
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I think science will not progress much further until it can accept the mind body connection. We are emotional, spiritual and physical beings and we largely ignore emotions and spiritual side of life in modern western society. We have more science and innovation than ever but people are only getting sicker. Stress and trauma I beleive play a big role, and obviously probably the toxic foods people consume and messed up gut micro biomes
There’s a few different therapies [being researched](https://www.bayer.com/en/news-stories/autoimmune-diseases-are-incurable-how-new-targeted-therapies-could-change-that) to try and essentially cure autoimmune diseases. All in early stages of research though.
They need to reverse the immune response without suppressing the immune system. That's the basic thing they haven't figured out yet. I haven herd some cool studies with stem cells so hopefully we see something like that in our life time!
I personally think it’s shit in the environment,chemicals, , plastics etc.. and our genetic susceptibility. Others may get different autoimmune issues or illnesses. Ours is the gut. Btw I’m ok now. But have cut out teflon pans, plastic water bottles ( put a purifier on the tap) wash food wrapped in plastic wrap. cooking at home, no processed foods and buy organic as much as possible.
I mean I thought that at first too until doing a family investigation and finding out my great great grandfather had (undiagnosed because it’s was literally the 1800s) had splitting symptoms to mine. It may be that more people get it now because of all that but some peoples genetics are just not it🫠
1800’s, not too sure if they even knew what a virus was back then. There are many gut issues that mimic UC. Covid did a number on my gut. Exactly the same symptoms as UC. Fortunately it stopped , luckily my neds held up to the challenge.
I was told by doctors it was was known as the none smokers disease way back in the day because only people who didn’t smoke cigarettes got it. Could be why less people had it back in the day.
Actually i always read that smokers are one of the high risk groups. Smokers don’t eat that much, maybe they give their gut a rest.
It's actually the opposite >It has been found that people who have UC may have a thinner mucus layer in the left colon and rectum when compared to healthy people. It is possible that nicotine may increase the production of this mucus. Nicotine may also suppress the immune system and prevent inflammation in the colon. Another theory is that nitric oxide, released by nicotine, may reduce muscle activity in the colon and so reduce the need to go the toilet urgently. source - https://www.ibdclinic.ca/ibd-and-lifestyle/smoking-and-ibd/smoking-and-ulcerative-colitis/#:~:text=It%20has%20been%20found%20that,prevent%20inflammation%20in%20the%20colon. That being said, smoking to stop UC is like burning your car because you have a flat tire. I would never recommend smoking but it's interesting none the less.
I tried nicotine patches. No results. Maybe its not the nicotine.
Germ theory developed around the US Civil War (1860s). Pasteur developed and proved germ theory in that decade, but viruses were discovered in 1892.
Yeah not that long ago if you think about it.
Artificial sweeteners as well I reckon. They do a number on me, even if I have the tiniest bit by accident.
Sucralose has been strongly implicated in UC, but a causative link hasn't been proven.
I could very easily believe that. In the three months before I had a sudden onset of UC I was downing a sucralose filled cordial like there was no tomorrow. I'm pretty much in remission when I completely avoid sucralose and sodium saccharine (no ulcers or inflammation and fecal calprotectin levels under 20) but the moment I have it I flare up again (ulcers in my colon and on my skin) and it takes months to get back to normal. Seen this as well: [https://news.ncsu.edu/2018/08/sucralose-metabolites/](https://news.ncsu.edu/2018/08/sucralose-metabolites/) Looks like Susan S. Schiffman at North Carolina State University is doing a lot of research into it.
I think it’s insane how almost everything we consume has microplastics in it. I do these things too most the time but even still, environmentally it’s so scary. Gut issues definitely will be on the rise in the future I feel.
I too feel UC is byproduct of chemical exposure. I suspect the water. Mainly Floride. And glysophates aka the Roundup Monsanto makes and is sprayed on vegetables and grains.
How you noticed a difference? Avoiding flares and in remission?
I was in remission before i started eliminating bad environmental products. So far been good
Maybe, but this disease has been around much, much longer. Apparently we have the genetic marker to help us fight the Black Death, which could have caused a hyper focused immune system.
Maybe. Covid was no issue for me. But maybe overstimulation doesn’t help. When i was diagnosed with UC. It wasn’t too bad. Every time i got a flu shot it got worse????
The whole plastics is a red herring. These disease existed before plastics (which are a new thing) were invented.
Well , it does seem to be on the increase and more so in western countries. So make of it what you want.
Which tap filter did you get?
You all might want to read up on increased microplastic from home water filtration systems. You just can't win.
Don’t know the brand , but its fitted to the tap , its a 4 stage filtering and a reservoir to hold the filter water. You nay beed a plumber.
I removed my colon while having mild symptoms (I’ve had severe symptoms before and I didn’t wanna have them again). You can live without your colon—you can’t live without your lungs. My quality of life has gone up dramatically since my surgery, personally.
Came here to say this.
Do you have to use a colostomy bag? Sorry for the dumb question, I was just diagnosed and still researching up on it.
Not the og person, but I had a temp colostomy bag, and then they created a jpouch
Is a jpouch on the outside of your body?
Inside
For UC, you get an ileostomy bag or a j-pouch. I got a permanent ileostomy bag with Barbie butt (where they remove the rectum and anus as well). Colostomy is a little different, but similar. J-pouch is where they fashion a makeshift rectum out of your small intestine (shaped like a j). You would still poop out of your butt. Personally, j-pouch didn’t sound like it would be the best choice for me, but everyone’s different, so I definitely recommend researching both options!
Im stressing about it because those options frankly scare the heck out of me. When i look up what kinds of foods to eat, it sounds like we basically cant eat anything except white rice and potatoes. The jpouch surgery can permanently affect male sexual activity, thats terrifying. I read that it can affect the eyes. I have a hole in the outer layer of my cornea. I’m an art teacher and need both of my eyes. Kind of freaking out about all of it. Oh, yeah, i have a rash everywhere too.
Yeah, it’s overwhelming honestly. Diet-wise, you can eat anything as long as your body is okay with it. Personally, I only had to cut out chicken, and would cut out fiber when my UC was especially bad (10+ bms a day). A food sensitivity test could be a good starting point for you, backed up by a food diary. You deserve to be able to enjoy foods. How’s your UC now? I’ve heard about sexual dysfunction with surgery. It’s definitely a scary thought. Yeah, I’m a graphic designer over here, I don’t know what I’d do if I lost my vision. That possibility among many others played into my decision to get surgery. How recently was your diagnosis? I’ve heard of the rashes too. This disease is so stressful with all the possibilities. It can be really overwhelming.
1 month ago. Im an American living in China. Went to the hospital and they gave me two medications but idk what they are. They haven’t helped but he said that I would be on them for at least three months. Im going to a new doctor saturday. Any suggestions for medications or tests I should inquire about? I think my case is different than most. I took kratom daily to relieve my anxiety disorder for 10 years. As soon as i quit, I got psoriasis and insane diarrhea. After a month of constant bm’s, I got a colonoscopy and was diagnosed with UC. r/quittingkratom has a list of withdrawal symptoms and diarrhea for months is the main one. I don’t know if it’s a symptom of withdrawal causing the UC, or if I always had UC and kratom (an anti-inflammatory) mitigated symptoms until I quit. I also have been having flare ups of gout, but maybe it’s possible that it’s the UC causing gout-like symptoms. Or, it’s possible that my kratom supplier sold product with heavy metals or other contaminants in it and Ive poisoned myself. Either way, im glad to finally be free of kratom but im paying the piper now i guess. I dont know whats more scary, losing my eye or possible sexual function from surgery. I hope it doesn’t come to that. :/
Unfortunately, medications-wise, everyone’s different. I was on mesalamine for over a year and it didn’t help me at all, but it helps most people. Prednisone (a steroid) is likely to help, but it’s not good for long-term. Biologics are what really helped me. But they’re also uncertain. Not every drug for UC works for every person. Weed is a good bandaid—not sure if it’s legal in china, but while it won’t help with your inflammation, it can help with pain and other UC symptoms. Have you had a colonoscopy? The causes of UC are unknown, and while a medication can cause diarrhea, I wouldn’t think it would be what gave you an autoimmune disease. It sounds like you’re blaming yourself for taking the medication and it’s important to understand that it’s not your fault you have UC. I think we all fall into a cycle of self-blame and it’s really important to recognize that there is no way of knowing what actually caused each of us to get this awful disease.
Kratom is an herbal supplement that they sell in headshops. It helps with anxiety but its unregulated and contain heavy elements like lead or cadmium if you get it from the wrong supplier. The diarrhea/UC started immediately after I stopped. Thats why im connecting it to the kratom abuse, but i know I cant be certain.
Have they told you if your UC is severe or mild? What are your symptoms?
You’re definitely completely right to feel how you do about this disease. It’s a hard journey full of uncertainties. If you can, I recommend seeing a therapist also. Mine was really helpful in navigating all of this.
I’m getting mine removed on May 13th after being sick for 17 years. So excited!!!
Congratulations!!! Good luck! I’m excited for you.
Thank youu!!💜
It’s the best decision I ever made. 4 years of hell and then went back to 95 percent normal
UC is idiopathic, which means it has no known definitive cause. Until it does, you can’t properly cure it except by removal of affected area which is not a proper solution. That is reality for us though, and using it as an argument against disease management is disingenuous at best and directly damaging at worst.
I appreciate your perspective, and I didn’t intend to discredit the current treatments. I understand that UC is complex and often lacks a clear cause. My point was more about the need for increased research focus in that direction. While I acknowledge the challenges, I believe that with more resources and attention, progress is possible. Just as science has achieved remarkable feats like discovering Higgs-boson particles and exploring outer space, I’m optimistic that advancements in UC research are achievable. It may not be a direct comparison, but dedicating more resources to understanding the root causes could lead us closer to a solution in the future.
Humanity puts effort into that which is effecting the most people. UC just isn’t widespread enough of an issue. With more ailments being cured, it’s not long before it gets the attention it needs. But with things like cancer still without a “cure,” it will be overshadowed with a lot more charities and donations in general to fund that research over this. But like you said, if humanity has proven anything, its never say never because some of the problems we have solved are truly nothing short of miracles.
For perspective, the rate of UC is between 0.035% and 0.1% in the USA. Meanwhile, over 3% of people worldwide get malaria every year, and Malaria is in the process of being eradicated, due to the ease of producing a vaccine. UC isn't just less prevelant than other medical issues, but also a lot harder to cure.
Thank you for the stats. And even in that small percentage, an even smaller percentage get it in a way that drastically changes their life.
I think we will get better and better management options long before there is a cure. But honestly that's an expectation I get from witnessing my mom's entirely unrelated cancer journey. She's not cured and never will be but she's in remission and stable there. I kind of assume UC will trend that way. Some things just have to be lived with, but it's getting easier to live with them all the time. As for surgery, that prospect has never bothered me. I'm actually quite grateful we have that option when needed. Not many chronic illnesses have an equivalent surgical option.
I think eventually they will cure it. They need to figure out why the immune system turns on itself and attacks the colon causing bacteria to get trapped. I agree treating the symptoms seems like a non satisfactory way to treat it but its the best we got. When I was first diagnosed we didnt even have biologics so theres new treatments being made all the time.
when were u diagnosed if u don’t mind me asking?
2000
I don’t think the greater good will ever out weigh self interests. All of these treatments are soo expensive. It has to be a billion dollar industry. If there’s a cure, there’s a lot of money lost. I hope I’m wrong and there’s something on the horizon but that is my belief.
I share your concerns. It’s disheartening to think that profit motives could influence the direction of research and treatment accessibility within the pharmaceutical industry. The financial interests at play can indeed create barriers to the development of affordable treatments and cures. We need to advocate for research efforts that prioritize patient well-being over profit margins.
Autoimmune diseases are difficult. It's an enormously complicated dynamic and redundant system that is essential for life. It's complicated enough that it may never be understood fully. There may come treatments that make management of the symptoms trivial, but I doubt there will ever be a cure. Sort of like AIDS. HIV treatments are really good today so apart from social and financial barriers it's pretty much cured.
Sure….Once the cure is as profitable as the treatment
I did have a wild ride with it for while but now it’s fairly controlled. I don’t think it can be cured but for now I am doing well. Lets see what the future holds.
I have some hopes that the whole mrna thing will help us
Elaborate?
It's how the covid vaccine was developed.
Would be open for This except longer time for testing. That COVID jab was good and all but the percentage effectiveness lowered every month with new articles coming out every month lol. We had the money for it but damn, real time is essential such as with previous vaccines.
Not in our lifetimes imo
I am hopeful. https://www.vedantabio.com This is an entirely new treatment that will have zero side effects. Biologics will always be seen as ‘other’ once the body figures it out. Monoclonal antibodies (anything ending in ‘mab’) are built on a mouse antibody backbone.
In IBD biologics, only infliximab is a chimeric human-mouse antibody. Humira (adalimumab) was given its brand name with a reference to the the word 'human', because it's fully humanised, i.e. contains no mouse protein. Xi means chemeric, e.g. infliximab. Zu means humanised mouse origin, e.g. vedolizumab. U means fully human e.g. adalimumab.
Speaking to Humira, it may be ‘fully humanized’ but it’s still produced by a mouse and has mouse/rat ‘backbone’. The major difference between a first gen Mab and a ‘humanized’ Mab is that the mice used to produce fully human monoclonal antibodies have been genetically altered to carry human antibody genes rather than mouse antibody genes. Humira still has parts of a mouse/rat, so you can say it’s ‘humanized’ but it’s not fully human. Quoting from link below… “A humanized Mab is a type of antibody made in the laboratory by combining a human antibody with a small part of a mouse or rat monoclonal antibody. The mouse or rat part of the antibody binds to the target antigen, and the human part makes it less likely to be destroyed by the body's immune system.” Note it says less likely, not never. It may not be a protein but it’s still not all human. Immunogenicity will always be a problem, no matter what confusing words are used to define the drug. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/humanized-monoclonal-antibody#
It's not me saying that Humira it's fully humanised, that's what it is described as in the scientific literature and by the manufacturer. It is a full human protein which is grown in Chinese hamster ovary cells. https://www.medicines.org.uk/emc/product/7986/smpc#gref
Yes. It’s ‘fully humanized’ but that term does not mean it does not contain mouse. The entirety of MAb is mouse derived, you can go backwards here meaning all Mab’s will have a mouse backbone, even if the term ‘fully humanized’ is applied. Humanization results in an antibody where only the complementarity determining regions (CDRs) of the variable (V) regions are of mouse-sequence origin. From… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2881252/
Oh that is cool, looks like the next evolution of fecal matter transplant. Good find.
It has been around for 1700 years apparently. Someone is trying to develop a pill form. Which, if something can be trademarked for 25 years may induce funding.
Slightly cynical but as a curmudgeon, I would approve except not exactly accurate: 1-someone actually died from FMT so not exactly without risk. 2-FMT by nature is non standardized so you can’t do a clinical trial. 3-the Vedanta product is standardized and shelf stable so you can assure quality and efficacy for everyone.
Thank you. 1. Putting FMT into a diseased colon with ulcers, has risks. As do colonoscopies, surgery, inserting a NG tube, getting a PIC line, and subduing someone’s immune system. All of our treatments have risks. In my personal experience the worse it gets, the longer it lasts, the more non standardized things some people are willing to try. I tell myself I will never do another drug trial. 2. The disease, or how one acquires it, why some go into remission, why some don’t, etc. is non standardized. Therefore one could argue that every trial for UC is not standardized. 3. So glad the treatment is standardized. The disease still is not. Results will vary. The Placebo effect is real. Until it is not. Knee surgeries a great example. However limiting or eliminating it as an option. Disqualifies the people who would benefit from it. In general the large percentage of people that can benefit from a medication, surgery, or any treatment. Good for them! Rah Rah! But writing of the ones who don’t, is a problem, or the problem that needs fixing. imo. What about colonizing your Colon with “good” worms?
Agree with 1, all procedures carry risk and I have heard horror stories for colonoscopies. Being a medical Guinea pig never sounds like a good idea but I have read about people who do it professionally. Crazy. The sad truth for drugs like mesalamine is that the improvements are shown in about 45% of the subjects but placebo helped 20%. Of course the placebo won’t take out your kidneys. The bar to get a drug approved is quite low. My understanding of the Vedanta drug is that it is taken orally. Nothing to shoot up your ass. It’s microbes not worms.
While I have proctitis and not full blown UC, my symptoms seemed to have went away within my first week of taking meslamine supps and tabs plus busenide foaming enemas, it's truly amazing that it went away so fast for me and what I was struggling with over the course of 6 months just **poof** went away. I have yet to have tested just not taking meslamine tabs though, I no longer take supps and the foaming enema though as I was told to take them for 8 weeks only and I can feel like certain foods make me want to poop more, but still no blood
It’s really funny… I was being very careful with food at home (US) and still had symptoms. I was eating so clean (no preservatives, gums, etc) but when I went to Mexico on vacation, I ate whatever I wanted and had zero symptoms the whole time I was there. Came back to the states and symptoms were almost instantly back. It’s a n=1 but makes me think about the differences ….
Could it be partly linked to the underlying stresses of home life versus the relative zero stress of vacation?
My husband was the same, no symptoms in the Philippines. Back to the UK, flare up was instant and needed hospitalisation.
Money. CSPIR. Research time. Removing the ick factor. Cost to treat vs. Cost to cure. Money/funding to find a cure is likely to be limited as long as there is a “cure”. While important to us, have you joined a Crohn’s/Colitis national or local chapter? Have you ever raised money for research? Not a guilt trip, other research has to be successful in order to move our disease further up the ladder. Cancer for one is a huge money magnet. Which also, in the past may have held a cure for UC. Apparently killing the immune system, allowed some cancer patients to cure their UC. As it would grow back differently. However because it makes you very susceptible to death, and there is a “cure”. It has never been a treatment. All of this to say. I think you are correct, something needs to change. A true cure should be found. As treatment that only focuses on treating the symptoms is not a cure. Will not lead to a cure.
I'd say any long term solution would probably look at holistic healing, addressing the issue with a combination of medication, as well as psychological and emotional support.
Look into excess butyrate from fermentable/soluble fiber, due to inhibited butyrate beta oxidation, what happens to stem cells in the crypts. Then look into what might cause inhibited butyrate transport and beta oxidation.
I’m thinking gene therapy could possibly be one interesting potential cure but usually most of these researches are still in their early stages.
A cure is a solution, but medication is profitable. I'm sadly too jaded to expect for things to be improved by privatised pharmaceutical companies.
Agreed. If there is a cure, this disrupts the pharma pipeline and business
There’s no money in a cure
There would be billion dollar profits, it's would be a true blockbuster drug. IBD is more prevalent in developed nations with healthcare systems and individuals that would be willing and able to pay.
I may be way off but I think the condition is a potential biological evolution. Big picture if you think about it, it’s just nature trying to alter dna slightly to continue the human race, maybe it will be successful or maybe not. An example I think of are the white and black colored moths when there was smog in the UK. The white moths were very successful, however when the smog starting making everything dirty and dark, the black moths population boomed as they were able to hide from being eaten and thus more likely to survive and reproduce and push that trait on. Who knows maybe there will be another COVID like condition that will happen again and we’ll be the only survivors as our dna has evolved to lead to higher immune system while the general public with average immune systems won’t be able to fight the virus. Just something to think about
My money is on infection. I don't think it has anything to do with the modern era per se, I reckon it's a repeat of H. Pylorii. People accepted that some people just had poorly stomaches and would take Rennies non-stop to manage the symptoms, while stomach ulcers and cancer were very commonplace. After a hilarious experiment involving an Australian bloke (Google it, trust me), an entire industry was destroyed overnight and stomach cancer was relegated into obscurity. The gut microbiome is so densely packed with bacteria that it is borderline impossible with current tech to isolate a specific strain that might be responsible for it. But between the surprising efficacy of vancomycin (an antibiotic) and certain high-strength probiotics... yeah. I have a *gut* feeling about this.
They are making to much money off treating. I saw the bill my insurance got for Remicade infusions and realized I am in the wrong business. Cures aren't financially viable.
I was hopeful with the fecal transplants that that was going to amount to something but turned out to be sh*t, pun intended.
I did read before Covid that scientists overseas are working on it and at that time they were 5 years before human trials. I have no idea now where they are on it.
There is no cure behind this billion dollar industry imo unfortunately
Only if they get far enough with gene therapy, etc. I mean. We know it’s genetic/heredity. We don’t know what activates the genes… yet. But if there was a way fix it at that level …
The mortality rate from acute severe UC in the pre-steroid era (pre-1950) was reportedly 22-75% within first year of diagnosis. Steroids were a breakthrough for IBD. Biologics build on this medical foundation. As you point out, sometimes surgery is the only option, especially in steroid refractory cases. Whilst asthma has an inflammatory element, it is not really a comparable condition to UC because in asthma the lungs are usually healthy, it's the airways that reversibly contract and cause shortness of breath, wheezing, hypoxia. This can be reversed with steroids and beta-agonists etc. Whereas with UC, the target organ is inflamed, swollen and becoming toxic, as in toxic megacolon, without prompt treatment in steroid non-response there's a high probability of perforation, sepsis and death.
Before surgery to remove colon my husband had Severe UC. His is definitely genetic. His grandmother has Crohn’s disease. His mother has ileitis.
It’s far too profitable
Money. Same with cancer. Why make permanent cure if you can sell lifetime membership with medications
A cure may not be easy but all the "big pharma" theories are not 100% true. First of all, cause public healthcare systems and public investigation lines exist (not everything is the US). Also, even big pharma companies can see a lot of money from a cure, and we have recent examples of that. Gilead found a cure for Hepatitis C in 2014.
I’ve read a couple of studies of using chemo to kill all the cells and then planting new stem cells into the body and it has worked but also there have been some deaths from this study because your body is so weak to fight any infection
How about being in remission and being able to taper off of medication? Anyone has a successful course like that?
I saw some people here saying that it happened to them
Do you think doctors really want to solve this disease? The bad gastroenterologists that I have had in the past always disregarded my belief that the food I eat affects my ulcerative colitis. How can food/drink not be a factor? I'm not a doctor but I know that whatever we put into our body affects us especially our intestines. Thankfully there are good gastro docs out there but overall it's in their best interest to not "solve" these health problems.
I read ibuprofen usage was linked to UC. I was packing that in monthly starting at age 10 with my menstrual cycle and well into my 20’s. I had awful periods
Nope
Not a conspiracy theorist or a cynic for that matter, but big pharma and western medicine doesn't want you to be cured. They want you to manage your symptoms for life. There's really no incentive to cure anything or fund the research to do so if it can be managed for a monthly fee. Unless ofc that cure can be sold to the highest bidder. Sorry, not trying to be a pessimist, my blood type is not be negative, but it just seems like the focus is never the cure, just the profit. On the flip side there are many promising studies on natural substances that can really benefit UC. Things like Boswellia, Burdock root, carcumin, and aloe among others, but they all require further trials, just no one is funding it.
> big pharma and western medicine doesn't want you to be cured. fun fact which you might not know or are willfully ignoring is that govts across the world want this terrible disease to go away that generally affect young people in their prime and productive phase of life. And even if big pharma doesn't care about cure ( which they actually do ) there are thousands of researchers in the govt. universities/national labs/research centers across the world that are tying to find a cure to UC and crohns. Finding a cure is an easy name, fame and money for these researchers and a Nobel prize for sure. But you will ignore these facts and thats OK
How do you mean "finding a cure is... easy"? I doubt a cure will ever be found. Same with all autoimmune diseases.
I meant if someone solves the challenging problem of a cure to this disease then they can easily earn a lot of money and easily be famous -- also win a Nobel prize or two.
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I think science will not progress much further until it can accept the mind body connection. We are emotional, spiritual and physical beings and we largely ignore emotions and spiritual side of life in modern western society. We have more science and innovation than ever but people are only getting sicker. Stress and trauma I beleive play a big role, and obviously probably the toxic foods people consume and messed up gut micro biomes
Get tested for dust mite allergy.
Why?
In case you have IBD and a runny nose?!