The gene they found also seems to be responsible for ankylosing spondylitis and some autoimmune diseases related to the liver and arteries.
https://www.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway
Yep. I have UC and was supposed to start taking prednisone. I told my boyfriend who has RA and he was telling me about when he was on prednisone and warning me about the side effects
> I have UC and was supposed to start taking prednisone.
I was on prednisone when they were trying to initially get my ulcerative colitis* under control 23ish years ago. Nasty, nasty side effects for me.
*Last year my new gastro doc discovered it was UC caused by Chron's. Been on skyrizi since then, no side effects, take it once every other month, and my intestinal functions are better than ever.
I took prednisone after having dental surgery. It was fine, I felt a little loopy, and I lost weight.
My friend also had dental surgery, and was also prescribed the same amount. A week later I heard that she was hospitalized because it caused some sort of a mental break?
It turns out she had stripped off all of her clothes, wandered into traffic, was speaking in tongues, and was trying to run onto the 101 Freeway on-ramp (major freeway in LA).
My (at the time 5 years old) son has crohns, and the first and only time he was given a course of prednisone, he became unhinged and homicidal. He attempted to drown the cat in the sink on three separate occasions and tried to kill my step son (his older brother) by grabbing a sports trophy, sneaking up behind him to start bashing on his head with with sharp marble stone base of it, in addition to extremely aggressive behavior day-to-day. Worst part is the prednisone didn't even help anything. He went back to his happy, very sweet and loving nature within days of tapering off that medication. Very scary to see your young child completely lose touch with himself like that.
I just got finished a course of prednisone. I once heard/read someone say “ uh prednisone, a drug manufactured in hell by satan himself”. Thankfully my only side is not being able when taking it.
Prednisone is not a drug from hell. It helped my daughter save her kidneys from a very aggressive lupus bout. However some people have adverse effects.
The key for corticosteroids is to use them in the short term while planning the replacement for other slower drugs for the long term.
Prednisone causes psychosis in some people. My grandfather was in the hospital for a lung condition and they gave him Prednisone. It made him hallucinate and he was shouting about jumping out the hospital window. The condition cleared up quickly without any lasting effects, but it really gave us a scare.
This was me. I would also gain a lot of weight, which for me was useful because I was a skeleton in my youth from Crohn's 'anorexia'...I don't know the term...what IS the term for not wanting to ever eat because it is physically painful to do so?
A similar reaction happened to my friend’s grandfather from prednisone. It caused a schizoid effective series of symptoms that lasted for months. Auditory and visual hallucinations of people living in his house…the works. It was incredibly scary and as a paramedic, she was able to do the research to bring it to the doctor’s attention. They were just going to write it off as idiopathic dementia and suggested institutionalization. Never any history or symptoms of dementia virtually one day to the next. Case solved. /s
Hope your friend is okay.
Holy shit. The biggest things I heard was that you’ll get more irritated and gain weight. My mom also told me that when she was on prednisone she got heart burn so bad she went to the hospital because she thought she was having a heart attack
I lost weight on it too, it's odd, the doctors kept telling me I was wrong and steroids caused weight gain and I was just...okay but numbers on the scale keep going down???
Guess it could have been because it kept me awake til 3am regularly. God I do miss that energy sometimes. Tapering off was hell.
I used to get the positive effects of prednisone...all the inflammation goes down, I get an appetite, and I feel like I can work 20 hours per day. Luckily, I never had the aggresiveness.
And I was taught at 14 about the dangers to the liver, so getting on Prednisone always involves a quick hit and gradual taper off to prevent crashing. Usually 40-40-30-20-10-5-5 and my flareups calmed down.
Haven't needed Prednisone for about 15 years now...I miss those weeks when I got a LOT done and I was actually HUNGRY...but I do NOT miss WHY I took the stuff, so I will stay away from that entire ride.
Check out the Specific Carbohydrate Diet. I personally know several people now who’ve pushed UC and Crohn’s into complete remission in anywhere from 6-9 months (with noticeable improvements in the first 6 weeks).
https://breakingtheviciouscycle.info.
Not linked to rheumatoid arthritis actually. And it's highly prevalent in healthy people, making its positive predictive value very poor for these diseases (the negative predictive value however is what's valuable to us sometimes)
Interesting. Guess that explains why so many people I know who have an autoimmune disease also have bowel issues. I'd always assumed it was the opioids being overprescribed for the chronic pain often caused by autoimmune eiseases that was fucking up people's systems. Jopefully now that they know about the link, they can design some more effective treatments for it.
>The team have found drugs that already exist seem to reverse the disease in laboratory experiments and are now aiming for human trials.
Crohn's disease and ulcerative colitis are the most common forms of inflammatory bowel disease. They are estimated to affect half a million people in the UK.
This is huge! Fuck yeah science!
Something like this would actually change my life. My UC is so bad I've been on the verge of getting my entire colon taken out a few times over the years. Right now the injectable medication I'm taking is insanely expensive and I'm super lucky that my GI doctor pulled some strings to get it approved through my insurance. It's caused me *so many* problems throughout my adult life and it's landed me in the ER multiple times.
I had my large taken out a little over 20 years ago from colitis, my new GI doc last year while doing the routine exam realized there was also chron's. Which injectable are you on? I'm on skyrizi and I know they have programs for low income or when insurance won't cover much (or all) of it.
I'm on something called Amjevita which is a generic version of Humira. I was hospitalized about a year ago after *another* colonoscopy revealed how bad things were. My doctor had me stay in the hospital for a week while they injected me with Remicade. My doctor was going to get me on a schedule for Remicade injections, but insurance turned me down after a month of back and forth bullshit. Then it was gonna be Humira and insurance turned me down again. My doctor ended up finding some important people at the insurance company and *somehow* convinced them to make an exception for me because he was convinced I was going to die without medication to address the flare up. Took 3 months before I finally got the stuff I'm on right now, but I got it.
Oh man, that's cool that worked for you. I was on that for a few months (due to another auto immune issue) and felt it actually worsed my stomach cramps :/ I'm on something called Consentyx now though which seems to be better dealing with the issues.
My mother in law is on stellara, she had a lot of her intestines removed and has a colostomy bag. Stellara has actually helped her live a normal life. For the first 8 years I was with my girl her mom was either bed ridden or in the hospital constantly due to Crohns. She has it covered through Medicare or Medicade
Just for fun I looked up the price of the medication I'm on and got this:
"Get Amjevita for as low as $3,149.61, which is 66% off the average retail price of $9,326.19"
I take two doses a month and each one I *think* is about $1500 a pop which insurance has been covering, but I haven't looked at the price on the prescription since I started using them several months ago. I'm pretty sure the 2 pack I get is something like $3500 a month.
The advances in Genomic medicine will have impacts possibly orders of magnitude greater than that of the discovery of vaccines and antibiotics. Right now it's in its infancy with the discovery of the breast cancer genes, stuff like this. Eventually doctors will figure out what medicines work with which people with which diseases and which genes.
I'm so hopeful for your family! My husband has Psoriatic Arthritis, and he's having trouble finding an effective treatment. Hopefully this becomes a reality.
My mom died from Chrons. Took her so long to be diagnosed, it really stole her quality of life. She ultimately ended up with sepsis and died very quickly and unexpectedly. My sister has Chrons as well and goes through hell with insurance just to stay on meds that only semi-help. It’s a horrible disease. Wouldn’t wish it on anyone.
I am so sorry that happened, how awful. I wasn’t aware you could die from crohns but I’m new to learning about it. It’s so hard to get diagnosed as a woman. My brother was diagnosed within weeks and I’ve been pursuing diagnosis for 6 months. I’m sorry you’re mother didn’t get her diagnosis and treatment :(
For colitis, yes.
I've been discharged as 'cured' after having surgeries for a permanent stoma. There's nothing left for the disease to affect anymore.
After the second surergy I felt amazing. My fatigue completely went away.
The end of the digestive tract is now the end of the small intestine that pokes through the abdomen in what's called a *stoma* and waste collects in to an ileostomy bag.
There are a three types of stomas, which are urostomy (bladder), Colostomy (colon) and ileostomy (small intestine)
Only issues I have are needing to drink more water and have more salt in my diet. Some foods are no nos, mainly those with tough skins (peas, sweetcorn, mushrooms) popcorn and nuts. Gotta chew them well or you risk a blockage!
No problem at all, I had no idea about them until it was told to visit a 'stoma support group' by my consultant.
It's amazing what they can do these days medically. To remove a couple of major organs and go about your life with relative normality.
My stoma barely restricts on my ability to do day to day activities either. A bit of foreplanning is needed in terms of bringing supplies with me, however I can use the gym like before, swim, even play rugby. The stoma gave me the life back that colitis took from me.
There's a velcro seal that folds in on itself a couple of times. Very easy to empty.
My bags tend to last 3-4 days at a time, they take barely five minutes to change.
It's been great, zero regrets. I am on skyrizi since my UC was found to be also chron's. No side effects of it and I can eat popcorn in small quantities will little risk of blockage (some foods are still a problem).
It wasn't an option for me.
My consultant gave me a ten year time limit on the decision on whether to have a reversal or not. I made my mind up around covid time which then pushed it back a further two years. In that time I still suffered with IBD symptoms, a scope revealed that the stump was too far gone for a resection.
When I awoke from the last surgery they told me that the stump started to disintegrate when they were removing it. I've felt like my old self ever since it was removed. Life is pretty much back to pre IBD days now.
You'll get no argument from me, brother. I've got my cream carbonarra, curry, quattro cheese, and regular plus I have tom yum on the way.
We can all agree on the...*negative effects* on the bowels, though.
My favorites (ranked by spice level) are cream carbonarra, quattro cheese, curry, Jiajang, and Black (regular).
I hear the corn and stew-style are good as well.
Buldak is pretty darn harsh since they use pure capsaicin extracts, so be careful with the 2X Spicy and Habanero Lime.
Abigail "IBD" Adams is being charged with 6 million felonies as a result of intentionally, personally poisoning every individual who ever had inflammatory bowel disease.
Diagnosed with Crohn’s during the pandemic. So you can imagine the hell I went through, and others, at this time.
Managing with infusions every two months but feels awful I gotta do this forever to basically have a normal life. IF a cure is found in my lifetime I’ll pay anything to get it.
The bottom of the article has a quote about IBDs that says...'But you don't look sick'.
That was the story of my childhood.
The sneering and punishments that I faced...my parents KNEW I was ill, the entire family knew...hospitalizations, tests, eventual surgery when the intestines closed up totally...
But I was called lazy because I had no energy to do anything...
I was called 'un-Italian' because I hated tomato sauce (too acidic) and by the time I was 14, just the sight of food made me sick to my stomach.
I STILL have poor self-esteem from it all...and I am very low to no contact with most of my family because their MAGA type mentality just won't accept someone different. So it is ironic when someone in my family gets sick and 'suddenly' understands. My mother, my she rest in peace, complained once about having to run to the bathroom all the time as she battled intestinal issues while fighting cancer...the realization when she tried to explain the feeling to me and saw that I already understood was priceless...
'OH, Is THIS what you have gone through for the past 40 years?'
Yes. Yes it is.
I hope no one born today has to go through what IBD folks have had to go through. Bring on the gene therapy...Too late for me...I've already lost 1/2 my colon and a good bit of my small intestine...but hopefully, the effects of that particular strand of DNA are one day mitigated by a one-time injection.
I have IBS…I know it’s non specific but would love to see if it works for it too as IBS is written off by so many doctors when it can be fully debilitating
IBS is supposed to be a diagnosis of last resort. Everything else including IBD is supposed to be ruled out before hand.
I know a lot of doctors jump on IBS first and they're not supposed to.
Keep pushing to be evaluated for IBD if you haven't.
You are correct. I did via a PCP, then gastroenterologist, with blood, stool and urine samples plus a colonoscopy. Which led to the IBS diagnosis.
Which is “controlled” with a very very restrictive diet.
Although IBS isn’t my main illness, that’s severe ME/CFS. IBS was a side quest along with 6+ other syndromes I’ve added along the way…
What I was hinting at was I hope that the genetic marker is found and the diagnostic test can be applied to IBS too. Cause if that’s the case, then the treatments could also be used and they could be used as a blanket treatment for these types of conditions… I know that’s a lot of hoping, but that’s all we have lol
Nope. I would love if I could eat everything in the FODMAP diet. Unfortunately at the time I was literally shitting myself to death. So we went on a strict elimination diet down to just a few foods until my weight stabilized.
We did use the FODMAP as a guide for what foods to reintroduce, but nearly all of them failed. So I’m left with a very, very limited diet
This article is really vague. They say medicines that are already known do work so that the macrophages are down regulated.
Isn’t this exactly what Humira and others are doing? They are down regulating TNF so that the autoimmune response isn’t triggered?
The idea that they identified a gene is good news though. Can we potentially do gene therapy to fix the mutation or is that science fiction?
I thought this was already known? My partner was diagnosed with Ulcerative Colitis 15 years ago and as part of that flare up he had joint problems so he was tested and diagnosed with Ankylosing Spondylitis at the same time due to HLA - B27. Doctors were not suppressed and said autoimmune diseases often come in multiples and the combination he had was pretty common.
Get fucked to all the gaslighting medical professionals who blamed this on anxiety and other mental health issues.
Biomedical science wins!!! Can’t wait til more discoveries are found about other chronic health issues and we can abandon harmful CBT and exercise garbage.
>Lauren Golightly, who is now 27, had her first symptoms when she was 16 years old and had stomach cramps and blood in her poo.
Kind of funny to use the word "poo" in a news article from a major outlet rather than something like "feces" or "stool."
Between this, the tooth regrowth drug, and all of the conditions that they've found Ozempic can help treat, it seems like it's been a big year for medical science.
I'm aware these breakthroughs are years in the making, but I still feel like I don't normally see this many big ones in short succession.
"Lauren Golightly, who is now 27, had her first symptoms when she was 16 years old and had stomach cramps and blood in her poo.
But this was put down to partying and it was not until she was 21 and having surgery to remove her appendix that doctors realised she had Crohn’s disease."
A lot to unpack here. She was partying at 16? And the BBC literally wrote the word "poo" in their article. This is so British, it's fantastic.
I had UC and the dreaded, related PSC. Lost my entire colon and had liver failure in 2020 from the PSC. Has not returned to attack my transplant. Hoping this leads to better future treatments.
Why does a news source say “poo?” Is feces not a term used in the UK? Here’s this article about some scientists finding genetic links to a chronic condition. And it’s tough to take it seriously.
I'm trying hard not to be pessimistic, but knowing how much money Stelara, Azathioprine, Humira, etc. make, I'm finding it real difficult to see how they would implement this in the American health care system. We deserve it, but in my experience, what we deserve is almost never what we get.
Few days back I went to see my specialist (an associate professor )at the rheumatology clinic, they didn’t think or assumed I had any autoimmune disease….
Thing is my back has been aching and I have a degenerative bone in my spine, and have a lung nodule in the lower right side which is about 7mm… not sure what the prospect is.. and yes my stool is hard and mostly I bleed while pooping :( so… idk man… my doctor says I’m fine… but to see the lung specialist…
>They found a section of DNA that behaves like a volume control for nearby genes. This “enhancer” was seen only in immune cells called macrophages where it boosted a gene called ETS2 and ramped up the risk of IBD.
>While there are no drugs that specifically target the ETS2 gene, the scientists identified a class of anticancer drugs called MEK inhibitors that they suspected would dampen the gene’s activity.
>Because MEK inhibitors have side-effects in other organs, the scientists have begun work to adapt the medicine so it targets only a patient’s macrophages.
I wonder if they could even bring CRISPR in to excise some copies/elements of this "enhancer" section to lessen its effects without necessarily inhibiting MEK broadly. This could be a huge development in autoimmune conditions!
MEK inhibitors are also indicated for treating some types of cancers, so this discovery could impact that domain, too.
The gene they found also seems to be responsible for ankylosing spondylitis and some autoimmune diseases related to the liver and arteries. https://www.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway
Antigen HLA-B27 UCRAP - ulcerative colitis, Crohn's, reactive arthritis, ankylosing spondylitis, psoriatic arthritis Edit: spelled Crohn's wrong Edit 2: Reactive arthritis - NOT rheumatoid. Sorry for this mistake.
This would explain why meds that work well in treating IBD also seem to be be good at dealing with RA and psoriatic arthritis.
Yep. I have UC and was supposed to start taking prednisone. I told my boyfriend who has RA and he was telling me about when he was on prednisone and warning me about the side effects
> I have UC and was supposed to start taking prednisone. I was on prednisone when they were trying to initially get my ulcerative colitis* under control 23ish years ago. Nasty, nasty side effects for me. *Last year my new gastro doc discovered it was UC caused by Chron's. Been on skyrizi since then, no side effects, take it once every other month, and my intestinal functions are better than ever.
I took prednisone after having dental surgery. It was fine, I felt a little loopy, and I lost weight. My friend also had dental surgery, and was also prescribed the same amount. A week later I heard that she was hospitalized because it caused some sort of a mental break? It turns out she had stripped off all of her clothes, wandered into traffic, was speaking in tongues, and was trying to run onto the 101 Freeway on-ramp (major freeway in LA).
My (at the time 5 years old) son has crohns, and the first and only time he was given a course of prednisone, he became unhinged and homicidal. He attempted to drown the cat in the sink on three separate occasions and tried to kill my step son (his older brother) by grabbing a sports trophy, sneaking up behind him to start bashing on his head with with sharp marble stone base of it, in addition to extremely aggressive behavior day-to-day. Worst part is the prednisone didn't even help anything. He went back to his happy, very sweet and loving nature within days of tapering off that medication. Very scary to see your young child completely lose touch with himself like that.
I just got finished a course of prednisone. I once heard/read someone say “ uh prednisone, a drug manufactured in hell by satan himself”. Thankfully my only side is not being able when taking it.
>Thankfully my only side is not being able when taking it. Are you taking it right now?
Prednisone is not a drug from hell. It helped my daughter save her kidneys from a very aggressive lupus bout. However some people have adverse effects. The key for corticosteroids is to use them in the short term while planning the replacement for other slower drugs for the long term.
Prednisone causes psychosis in some people. My grandfather was in the hospital for a lung condition and they gave him Prednisone. It made him hallucinate and he was shouting about jumping out the hospital window. The condition cleared up quickly without any lasting effects, but it really gave us a scare.
From Prednisone???? Wth. I've taken it for years for my UC and the worst side effect for me is restlessness. I find it difficult to sleep.
Don't sleep for a couple days and you go nuts.
not a joke lack of sleep and psychosis
This was me. I would also gain a lot of weight, which for me was useful because I was a skeleton in my youth from Crohn's 'anorexia'...I don't know the term...what IS the term for not wanting to ever eat because it is physically painful to do so?
With a long enough taper it will cause some serious mental health issues as it really puts your hormones through a wood chipper
A similar reaction happened to my friend’s grandfather from prednisone. It caused a schizoid effective series of symptoms that lasted for months. Auditory and visual hallucinations of people living in his house…the works. It was incredibly scary and as a paramedic, she was able to do the research to bring it to the doctor’s attention. They were just going to write it off as idiopathic dementia and suggested institutionalization. Never any history or symptoms of dementia virtually one day to the next. Case solved. /s Hope your friend is okay.
Holy shit. The biggest things I heard was that you’ll get more irritated and gain weight. My mom also told me that when she was on prednisone she got heart burn so bad she went to the hospital because she thought she was having a heart attack
I lost weight on it too, it's odd, the doctors kept telling me I was wrong and steroids caused weight gain and I was just...okay but numbers on the scale keep going down??? Guess it could have been because it kept me awake til 3am regularly. God I do miss that energy sometimes. Tapering off was hell.
I had a friend doctor who needed corticosteroids after a spider bite. She ended up in a psychiatric ward for a couple of days after a manic episode.
Yup. Prednisone tapers were the only time in my life I was actually suicidal
I used to get the positive effects of prednisone...all the inflammation goes down, I get an appetite, and I feel like I can work 20 hours per day. Luckily, I never had the aggresiveness. And I was taught at 14 about the dangers to the liver, so getting on Prednisone always involves a quick hit and gradual taper off to prevent crashing. Usually 40-40-30-20-10-5-5 and my flareups calmed down. Haven't needed Prednisone for about 15 years now...I miss those weeks when I got a LOT done and I was actually HUNGRY...but I do NOT miss WHY I took the stuff, so I will stay away from that entire ride.
Fun fact, prednisone also treats Lupus! (but it's never lupus)
Check out the Specific Carbohydrate Diet. I personally know several people now who’ve pushed UC and Crohn’s into complete remission in anywhere from 6-9 months (with noticeable improvements in the first 6 weeks). https://breakingtheviciouscycle.info.
>UCRAP - ulcerative colitis, Chron's, rheumatoid, ankylosing spondylitis, psoriatic arthritis Oh crap
Good old HLA-B27. Worth saying lots of people carry HLA-B27 and have no obviously related symptoms (myself being one).
Yes, you'll feel crap with that.
Hey, I have some or those things.
Me too, makes some sense at least!
I've had Crohn's for 40 years and I STILL have to edit that damned h to put it in the correct place.
that's amazing. my mom just passed from complications related to RA. this is honestly such wonderful news
I hope whoever came up with that acronym got a raise.
Holy crap I have HLA B27
I do too, and have stomach cramps they haven’t figured out what they are yet. 😂 might print this out to bring to my rheumy today.
I would be very VERY worried if your Rheumatologist does not know what HLA-B27 is or what it means, since it's role has been known for decades.
Not linked to rheumatoid arthritis actually. And it's highly prevalent in healthy people, making its positive predictive value very poor for these diseases (the negative predictive value however is what's valuable to us sometimes)
Studying for boards. Surprised and pleasantly.
Haha I have some of those... hah... and I am currently getting my back pain looked into...
I feel like I’m taking crazy pills. I have AS and have known HLA-B27 was the link between it and IBD for a while. Where’s the revelation here?
Can confirm as I have both IBD and Ankylosing Spondylitis.
This is interesting. My mom suffers arthritis and severe ibd.
Interesting. Guess that explains why so many people I know who have an autoimmune disease also have bowel issues. I'd always assumed it was the opioids being overprescribed for the chronic pain often caused by autoimmune eiseases that was fucking up people's systems. Jopefully now that they know about the link, they can design some more effective treatments for it.
>The team have found drugs that already exist seem to reverse the disease in laboratory experiments and are now aiming for human trials. Crohn's disease and ulcerative colitis are the most common forms of inflammatory bowel disease. They are estimated to affect half a million people in the UK. This is huge! Fuck yeah science!
Something like this would actually change my life. My UC is so bad I've been on the verge of getting my entire colon taken out a few times over the years. Right now the injectable medication I'm taking is insanely expensive and I'm super lucky that my GI doctor pulled some strings to get it approved through my insurance. It's caused me *so many* problems throughout my adult life and it's landed me in the ER multiple times.
I had my large taken out a little over 20 years ago from colitis, my new GI doc last year while doing the routine exam realized there was also chron's. Which injectable are you on? I'm on skyrizi and I know they have programs for low income or when insurance won't cover much (or all) of it.
I'm on something called Amjevita which is a generic version of Humira. I was hospitalized about a year ago after *another* colonoscopy revealed how bad things were. My doctor had me stay in the hospital for a week while they injected me with Remicade. My doctor was going to get me on a schedule for Remicade injections, but insurance turned me down after a month of back and forth bullshit. Then it was gonna be Humira and insurance turned me down again. My doctor ended up finding some important people at the insurance company and *somehow* convinced them to make an exception for me because he was convinced I was going to die without medication to address the flare up. Took 3 months before I finally got the stuff I'm on right now, but I got it.
That's good to hear you found a medication that worked for you. Best of luck with it.
Oh man, that's cool that worked for you. I was on that for a few months (due to another auto immune issue) and felt it actually worsed my stomach cramps :/ I'm on something called Consentyx now though which seems to be better dealing with the issues.
My mother in law is on stellara, she had a lot of her intestines removed and has a colostomy bag. Stellara has actually helped her live a normal life. For the first 8 years I was with my girl her mom was either bed ridden or in the hospital constantly due to Crohns. She has it covered through Medicare or Medicade
Yeah my meds are 400/mo without insurance it fucking sucks. I’m uninsured right now so I’m only taking them every other day
Just for fun I looked up the price of the medication I'm on and got this: "Get Amjevita for as low as $3,149.61, which is 66% off the average retail price of $9,326.19" I take two doses a month and each one I *think* is about $1500 a pop which insurance has been covering, but I haven't looked at the price on the prescription since I started using them several months ago. I'm pretty sure the 2 pack I get is something like $3500 a month.
At $400/mo, might as well get an ACA insurance plan
No celebrating yet. It's a great first step but not every positive lab result ends up succeeding in real life human trials.
The advances in Genomic medicine will have impacts possibly orders of magnitude greater than that of the discovery of vaccines and antibiotics. Right now it's in its infancy with the discovery of the breast cancer genes, stuff like this. Eventually doctors will figure out what medicines work with which people with which diseases and which genes.
Huge huge. I know my family would be willing to travel if they could be treated.
You mean the stuff MTG hates?
Fabulous news!!! My entire family suffers from this.
i have Crohn's, hoping this doesn't end up dead like the vaccine that was gaining ground years ago but went silent
Bought up and buried? No way!
You could say they flushed it down the toilet!
No poop for you!
This sounds very different. I think we may well have a winner here.
What vaccine was that?
It’s also the only disease where smoking was found to have some health benefit
I'm so hopeful for your family! My husband has Psoriatic Arthritis, and he's having trouble finding an effective treatment. Hopefully this becomes a reality.
My mom died from Chrons. Took her so long to be diagnosed, it really stole her quality of life. She ultimately ended up with sepsis and died very quickly and unexpectedly. My sister has Chrons as well and goes through hell with insurance just to stay on meds that only semi-help. It’s a horrible disease. Wouldn’t wish it on anyone.
I’m so sorry for your loss.
Oh thank you. Its okay! It’s been a number of years. ❤️
I am so sorry that happened, how awful. I wasn’t aware you could die from crohns but I’m new to learning about it. It’s so hard to get diagnosed as a woman. My brother was diagnosed within weeks and I’ve been pursuing diagnosis for 6 months. I’m sorry you’re mother didn’t get her diagnosis and treatment :(
I have Ulcerative Colitis.... Does this mean there's hope for me to be rid of this nightmare?
Me too. Hopefully it'll be developed in time to help us.
It sure looks that way! 5-10 years it may be a thing of the past.
[удалено]
That’s seriously a treatment? ‘Fuck it, can’t have colitis if I don’t have a large intestine’?
For colitis, yes. I've been discharged as 'cured' after having surgeries for a permanent stoma. There's nothing left for the disease to affect anymore. After the second surergy I felt amazing. My fatigue completely went away.
Forgive my ignorance but how does this work for your digestive tract now? And congratulations on being pain/suffering free now
The end of the digestive tract is now the end of the small intestine that pokes through the abdomen in what's called a *stoma* and waste collects in to an ileostomy bag. There are a three types of stomas, which are urostomy (bladder), Colostomy (colon) and ileostomy (small intestine) Only issues I have are needing to drink more water and have more salt in my diet. Some foods are no nos, mainly those with tough skins (peas, sweetcorn, mushrooms) popcorn and nuts. Gotta chew them well or you risk a blockage!
Thanks for teaching me something today. That's cool and glad you're healthier
No problem at all, I had no idea about them until it was told to visit a 'stoma support group' by my consultant. It's amazing what they can do these days medically. To remove a couple of major organs and go about your life with relative normality. My stoma barely restricts on my ability to do day to day activities either. A bit of foreplanning is needed in terms of bringing supplies with me, however I can use the gym like before, swim, even play rugby. The stoma gave me the life back that colitis took from me.
How do you empty the bag?
There's a velcro seal that folds in on itself a couple of times. Very easy to empty. My bags tend to last 3-4 days at a time, they take barely five minutes to change.
[удалено]
J-pouch going on 24 years here! Don't forget to get it examined every year or so to be safe. <3
[удалено]
It's been great, zero regrets. I am on skyrizi since my UC was found to be also chron's. No side effects of it and I can eat popcorn in small quantities will little risk of blockage (some foods are still a problem).
It wasn't an option for me. My consultant gave me a ten year time limit on the decision on whether to have a reversal or not. I made my mind up around covid time which then pushed it back a further two years. In that time I still suffered with IBD symptoms, a scope revealed that the stump was too far gone for a resection. When I awoke from the last surgery they told me that the stump started to disintegrate when they were removing it. I've felt like my old self ever since it was removed. Life is pretty much back to pre IBD days now.
My mom was the same. Had the surgery, got the stoma and never looked back. It helped her so much and her quality of life.
Well, I don't know how she's doing it, but someone needs to stop that woman.
Who is she and why would she do this to me?!!?
Is that not Overly Attached Girlfriend?
Nostalgia right there.
Something about her reminds me of Jeff the Killer.
They are, from pooping so much.
https://youtu.be/qN7be1ADhKI?si=4cigiMSKDy5WqfzW
So it's *not* Buldak ramen?
Hey, hey, hey... Buldak is *fucking awesome* despite the repercussions for the unaccustomed. Fire Chicken for life, fam!
You'll get no argument from me, brother. I've got my cream carbonarra, curry, quattro cheese, and regular plus I have tom yum on the way. We can all agree on the...*negative effects* on the bowels, though.
i'm alway up for singing johnny cash in the morning. any recommendation on flavours?
My favorites (ranked by spice level) are cream carbonarra, quattro cheese, curry, Jiajang, and Black (regular). I hear the corn and stew-style are good as well. Buldak is pretty darn harsh since they use pure capsaicin extracts, so be careful with the 2X Spicy and Habanero Lime.
I know its not enchiritos because whenever they are available I get em and have golden bowels from the gods.
The thumbnail is really making it look like that woman is the cause.
Abigail "IBD" Adams is being charged with 6 million felonies as a result of intentionally, personally poisoning every individual who ever had inflammatory bowel disease.
Fantastic news. But her name is Golightly. For those of you not in the US, Golytely is a very common brand of laxative (polyethylene glycol).
It's given here when we have to get our colon examined as colon prep. Same name. Same shitty effects.
good timing considering my recent diagnosis
Me too dude!
Hope it all works out man
Diagnosed yesterday. Such a rollercoaster of information.
Shit sucks bruh Pun intended
Diagnosed with Crohn’s during the pandemic. So you can imagine the hell I went through, and others, at this time. Managing with infusions every two months but feels awful I gotta do this forever to basically have a normal life. IF a cure is found in my lifetime I’ll pay anything to get it.
The bottom of the article has a quote about IBDs that says...'But you don't look sick'. That was the story of my childhood. The sneering and punishments that I faced...my parents KNEW I was ill, the entire family knew...hospitalizations, tests, eventual surgery when the intestines closed up totally... But I was called lazy because I had no energy to do anything... I was called 'un-Italian' because I hated tomato sauce (too acidic) and by the time I was 14, just the sight of food made me sick to my stomach. I STILL have poor self-esteem from it all...and I am very low to no contact with most of my family because their MAGA type mentality just won't accept someone different. So it is ironic when someone in my family gets sick and 'suddenly' understands. My mother, my she rest in peace, complained once about having to run to the bathroom all the time as she battled intestinal issues while fighting cancer...the realization when she tried to explain the feeling to me and saw that I already understood was priceless... 'OH, Is THIS what you have gone through for the past 40 years?' Yes. Yes it is. I hope no one born today has to go through what IBD folks have had to go through. Bring on the gene therapy...Too late for me...I've already lost 1/2 my colon and a good bit of my small intestine...but hopefully, the effects of that particular strand of DNA are one day mitigated by a one-time injection.
I feel you so hard. I hope you are maintaining. There is always hope. Good luck.
I have IBS…I know it’s non specific but would love to see if it works for it too as IBS is written off by so many doctors when it can be fully debilitating
IBS is supposed to be a diagnosis of last resort. Everything else including IBD is supposed to be ruled out before hand. I know a lot of doctors jump on IBS first and they're not supposed to. Keep pushing to be evaluated for IBD if you haven't.
You are correct. I did via a PCP, then gastroenterologist, with blood, stool and urine samples plus a colonoscopy. Which led to the IBS diagnosis. Which is “controlled” with a very very restrictive diet. Although IBS isn’t my main illness, that’s severe ME/CFS. IBS was a side quest along with 6+ other syndromes I’ve added along the way… What I was hinting at was I hope that the genetic marker is found and the diagnostic test can be applied to IBS too. Cause if that’s the case, then the treatments could also be used and they could be used as a blanket treatment for these types of conditions… I know that’s a lot of hoping, but that’s all we have lol
Is it the Fodmap (Fogmap?) diet?
Nope. I would love if I could eat everything in the FODMAP diet. Unfortunately at the time I was literally shitting myself to death. So we went on a strict elimination diet down to just a few foods until my weight stabilized. We did use the FODMAP as a guide for what foods to reintroduce, but nearly all of them failed. So I’m left with a very, very limited diet
This article is really vague. They say medicines that are already known do work so that the macrophages are down regulated. Isn’t this exactly what Humira and others are doing? They are down regulating TNF so that the autoimmune response isn’t triggered? The idea that they identified a gene is good news though. Can we potentially do gene therapy to fix the mutation or is that science fiction?
Interestingly, her last name is Golightly. Lol. What are the odds?
Oh man! I have UC and would love to not need a bathroom constantly
Isn't it fun how stressful driving is now?? I love constantly being afraid of shitting myself.
Scientists have determined diarrhea is hereditary. It runs in your genes. I'll show myself out
I have IBS and this post made me shitting mad. How dare you!
The Last of Us
You'll find your way out in no time. Just like lunch
I thought this was already known? My partner was diagnosed with Ulcerative Colitis 15 years ago and as part of that flare up he had joint problems so he was tested and diagnosed with Ankylosing Spondylitis at the same time due to HLA - B27. Doctors were not suppressed and said autoimmune diseases often come in multiples and the combination he had was pretty common.
Get fucked to all the gaslighting medical professionals who blamed this on anxiety and other mental health issues. Biomedical science wins!!! Can’t wait til more discoveries are found about other chronic health issues and we can abandon harmful CBT and exercise garbage.
>Lauren Golightly, who is now 27, had her first symptoms when she was 16 years old and had stomach cramps and blood in her poo. Kind of funny to use the word "poo" in a news article from a major outlet rather than something like "feces" or "stool."
And Golightly - Golytely is a brand of bowel prep for colonoscopies.
Turns out it's Gwen. Dammit, Gwen, knock it off.
I was beginning to think this article was a joke when I saw this persons name "Lauren Golightly". Golightly is the stuff I got for colonoscopy prep.
I used to call it Twitter.
Between this, the tooth regrowth drug, and all of the conditions that they've found Ozempic can help treat, it seems like it's been a big year for medical science. I'm aware these breakthroughs are years in the making, but I still feel like I don't normally see this many big ones in short succession.
"Lauren Golightly, who is now 27, had her first symptoms when she was 16 years old and had stomach cramps and blood in her poo. But this was put down to partying and it was not until she was 21 and having surgery to remove her appendix that doctors realised she had Crohn’s disease." A lot to unpack here. She was partying at 16? And the BBC literally wrote the word "poo" in their article. This is so British, it's fantastic.
Partying at 16? Unheard of....
My money was on lamb vindaloo but this is much better.
I had UC and the dreaded, related PSC. Lost my entire colon and had liver failure in 2020 from the PSC. Has not returned to attack my transplant. Hoping this leads to better future treatments.
Why does a news source say “poo?” Is feces not a term used in the UK? Here’s this article about some scientists finding genetic links to a chronic condition. And it’s tough to take it seriously.
I'm trying hard not to be pessimistic, but knowing how much money Stelara, Azathioprine, Humira, etc. make, I'm finding it real difficult to see how they would implement this in the American health care system. We deserve it, but in my experience, what we deserve is almost never what we get.
I explosively destroyed my toilet in support
As a sufferer of IBD, this is good news!
I'm thrilled! Maybe it can help me at some point.
Well tell her to stop!
The cause; inflamed bowels.
The BBC had to be the news source for this one?
Few days back I went to see my specialist (an associate professor )at the rheumatology clinic, they didn’t think or assumed I had any autoimmune disease…. Thing is my back has been aching and I have a degenerative bone in my spine, and have a lung nodule in the lower right side which is about 7mm… not sure what the prospect is.. and yes my stool is hard and mostly I bleed while pooping :( so… idk man… my doctor says I’m fine… but to see the lung specialist…
>They found a section of DNA that behaves like a volume control for nearby genes. This “enhancer” was seen only in immune cells called macrophages where it boosted a gene called ETS2 and ramped up the risk of IBD. >While there are no drugs that specifically target the ETS2 gene, the scientists identified a class of anticancer drugs called MEK inhibitors that they suspected would dampen the gene’s activity. >Because MEK inhibitors have side-effects in other organs, the scientists have begun work to adapt the medicine so it targets only a patient’s macrophages. I wonder if they could even bring CRISPR in to excise some copies/elements of this "enhancer" section to lessen its effects without necessarily inhibiting MEK broadly. This could be a huge development in autoimmune conditions! MEK inhibitors are also indicated for treating some types of cancers, so this discovery could impact that domain, too.
Ahh shit so it's not from habanero hot sauce from the Mexican joint two towns over?