UC is curable for all we know

Sorry, guys. Just putting this thought out there. As you can see from a series of questions I've posted here, I'm still finding it hard to accept that I may have this disease. Last night hubby was watching this TV series Forever and they had a flashback of when Tuberculosis was still incurable. That sort of gave me hope that maybe someday UC can be cured as well. Who knows? But how do we know then if it's been cured when we always assume that we are just in remission and that it will come back again someday? Sorry if that question sounds ignorant. I'm not knowledgeable in any medical field so I honestly don't know.

It's probably not a good idea for me to linger on the internet, given that I have severe health anxiety. I'll just read one of your posts and already start thinking that I'm having the same symptoms too. I understand that knowledge is power but I just handle it differently. I've started considering the j-pouch surgery which I've read some of you had done (not sure if this is available in my country. though). I mean that's how I think. Worst case scenario all the time. Gary knew me from the start- self-fulfilling prophecy. :)

I'm just trying to be positive. My whole day is consumed with fears of UC. Today is my son's birthday and I've got to get my act together. He's 8 and I also have a 10-month old girl.

Anyway, here's to wishing there really is a permanent cure.

Well we know it cant be cured on its own. Will it be cured one day? For sure, but we are a few big break throughs away from that.

When were you diagnosed? It sounds way to early to be thinking about surgery to me..

I think it's safe to say that even if we find treatments that give patients very long lasting remissions, remissions that seem to go on forever, we won't call it a "cure" until we understand the underlying mechanisms of UC well enough to understand exactly how the treatment works to "cure" the disease.

Life is an incurable condition. I think UC is really hard for a lot of patients to accept because it tends to strike young people who are otherwise healthy. Pretty much everyone eventually gets a chronic illness unless they die young, be it garden variety hypertension or less common diseases like UC. It's scary to have something "forever," but everyone who lives long enough ends up with a "forever" disease. This kind of thinking was comforting for me, I hope it helps you.

Jardine said...
Allergy clinic! Helped me!

Please tell us more about this.

mla, this is my advise to you...

LIVE BY THE DAY.. dont worry to much on the future...

as you have said you do not have any symptoms you are very lucky... you put that in your head :) . and in the future if you will have the symptoms. meds will take care of that..

worst case with this disease is that your colon will be removed. but as i have searched and go thru site you can lived a pretty normal live without it. and to those people suffering with severe UC after the colon removal there life is back to normal..

happy birthday also to your son :)

Oh my god don't you dare consider surgery yet, you were literally just diagnosed and your case is so mild!! Please, you need to address your anxiety.

I believe that one day UC will be cured too.

You will cure something IF (and ONLY IF) you know what is causing it to begin with. TB is a simple disease caused by a darn smart bug (and so there was difficulty curing it). We don't yet know what is causing UC and hence the cure is elusive. That said, you have gotten a good advice already, keep anxiety down and live by the day. All days are not good, but all days are not bad either. When it hurts, it annoys a LOT. Ask me, 10-12 days I went into flare without doing anything odd, but the life (show) MUST GO ON.

Take a chill pill, have a good time with your kids.

Cure can be nothing more than a permanent remission. A maintenance med that is 100% effective is a cure. Large numbers of people with UC are almost at that point now and knowing what causes the disease was not necessary. 5ASAs were discovered in a population study of people on sulfasalazine with RA. They noticed that those that also had UC got better. No knowledge of UC was required.

I really think the mostly likely way a cure will be found is: A related condition, possibly with a simpler cause, will point the way to a better drug. Or you could also find a better drug that simply treats UC symptoms by totally controlling inflammation . You don't need a cause if you can stop inflammation before symptoms begin. I don't understand it but scientists do seem to understand the process of inflammation with UC.

If you UC was a generic disease caused by a single or group of mutations, we would already know it. Same thing for a simple environmental cause. The search is a multitude of genetic and environmental risk factors. People still get lung cancer, alzheimers disease ....and UC even if they have no genetic or environmental risk factors. Bad luck and a time bomb in everyone? You can greatly reduce the chances of getting it if you know these things. Prevention won't help us but it could help many.

My 2 cents are this...

UC is a pretty complex and relatively rare disease, which makes it difficult to study. Even when you add Crohn's to the mix, a very small portion of the population suffers from IBD. Yet, IBD is a relatively new phenomenon which is probably why it gets the attention that it does. Like many others, I suspect environmental causes are the trigger for its development. It's also likely there are multiple things in most IBD sufferers that eventually add up to creating IBD, which makes it even more complex. I wouldn't be surprised if lots more people have the genetic susceptibility to IBD but just never develop it because they never encounter the likely multiple environmental factors.

I personally believe that it is better to follow the entire field of autoimmune disease as far as research and breakthroughs go, because all autoimmune diseases have a single commonality...autoimmunity, obviously. The more we can understand about how this arises, what sorts of environmental inputs can make it happen, better methods of taming the immune system and such, everyone who has an autoimmune disease benefits. After all, a large portion of people with one autoimmune disease tend to have more than one autoimmune condition, which seems to be telling.

There's also bone marrow transplants being studied in patients with severe Crohn's that is no longer responsive to treatment and the only option is to keep cutting out the intestines, which is a short-sighted treatment plan. Those who have undergone BMTs with their own tissue will relapse with Crohn's or UC. However, those that receive tissue from other matching donors have seen their disease disappear and not come back. These results support the idea that genes, whatever genes they may be, give you a predisposition and environment is likely the trigger.

However, I really like that they are working on BMTs for severe Crohn's. Those of us with UC at least get to get rid of our colons and move on if it gets to that point, but currently, there's nothing that permanent with Crohn's, which sucks. However, if advancements in procedures make BMTs much safer and less intense of a process, perhaps one day those that don't respond to anti-inflammatories in IBD can bypass the biologics and go straight for BMTs to get rid of the disease. As of yet, BMTs are pretty risky and thus reserved for patients in very bad condition in a study setting, but I am pretty confident it will become an option for IBD/autoimmune patients in the future.

Better understanding of what can trigger AI disease will no doubt help the most. Prevention is the best medicine.

So fret not. Things aren't so bleak, even for those of us who have already crossed over to AI side.

I kind of believe that one day there will be a cure too.....but not in my lifetime....its just too complicated, insidious and nasty!

Hello mla1209,

I totally understand your apprehensions about UC but it was unclear if you have consulted a doc or not. If you haven’t, you really should do so as soon as possible.A physician’s diagnosis of the severity of the ailment is very much needed to determine the course of treatment; medication, surgery or some other methods best suitable to your condition. Will be praying for you!

PS: belated birthday wishes to your son!! Hope you guys had fun.

I also believe there will be advances in treatment in the short to medium term and a cure in the long term. Qu Biologics work is early stage, has sound theory and looks very promising so fingers crossed on that one. Anyone know when the results of their trial will be published?

I think that when a cure arrives it will take a long time to determine that it is in fact a cure. To put it another way, is you are in full clinical remission, no symptoms, confirmed by c-scope etc that's fantastic but how do you know it won't come back? The only way it to wait and find out. If a patient is given a medication or treatment and it puts them in full remission you can only really confirm its a cure if it lasts a lifetime and no just in one case but many, many cases.