Bladder can heal?

[Isabel_C]

Hi

I'm still in the process of diagnosis but just had a question about IC. I know that it is a chronic condition but after reading a lot about food related flares, sex etc and also discovering that drugs like elmiron are used in order to coat the bladder and help it heal, does this mean that in fact your bladder can heal over time if you take care of it and find the right treatment and that in fact you will then be rid of IC? It's just something I don't understand...if the condition is caused by an inflamed or scarred bladder then surely that bladder can then heal? I get that this would probably be the case for people with mild to moderate IC who have it caught early rather than those who have not had it diagnosed until quite a late stage. That's another question actually...if caught at a young age (for example I'm 21), do you have a better prognosis? Or is it just really variable?

I know it's been said before but honestly this website is brilliant. It's been so helpful and informative...I have my first appointment with a urologist in 2 weeks and I feel like now I will be equipped with information and questions about procedures, hopefully speeding about my diagnosis.

[ICNDonna]

Here's my view on the subject of healing: Yes, our bladders can heal, but the IC is still there. While medications like elmiron or bladder instillations will help by coating the bladder and easing discomfort, the repair of the bladder lining is not usually permanent. Some ICers are able to eventually taper away from treatments, but most of us will always have diet triggers, and most will need to continue treatments. I know of some who have been able, after a time, to reduce dosages --- but most of us will have symptoms return if we stop treatments and/or stray from the diet for an extended period.

I have had diagnosed IC for 35 years now and, while I feel good most of the time, I absolutely know that if I stray from my diet, the symptoms will return.

Warm hugs,
Donna

[Goldfinch]

I agree with Donna. There is some anecdotal evidence that a small minority of those diagnosed with IC go into a long remission after getting their symptoms under control and are able to stop their meds, but this does not seem to be the case with most of us who have IC.

Keep in mind that IC is a very broad diagnosis, and may ultimately be proven to be several diseases and not just one. After reading these boards for a while, it's pretty clear that symptoms vary widely and so do treatments. The fact that no one treatment works for everyone also muddies the waters. Add to that the fact that so many different systems are so close to each other in our bodies, and so entwined, and that pain is often referred and hard to pinpoint....and you realize just how complicated all of this must be.

If the best definition of IC we can come up with is that the protective gag layer of the bladder gets compromised somehow, evidence shows that the consequences of this are myriad. And no one can say for sure how or why this happens to any given individual. Maybe I was born with a fragile gag layer; it lasted okay for 60 years, but then gave me trouble. Maybe some can be born with a thin gag layer, or with a brittle one. Maybe mine was pretty good, but not quite good enough to last longer than 60 years. They really don't know. Maybe I did something that contributed to the deterioration of that protective layer. But what? Even the manufacturers of Elmiron don't know exactly how it works--whether it simply coats the bladder or aids in any kind of actual healing--whatever that might mean.
We don't really know if the gag layer has the potential to renew or repair itself, with or without drugs.

Read as much as possible here. Remember than most of us are not doctors, only patients with some degree of experience and that ultimately you are your own test subject and your own best advocate. Find a doctor you feel comfortable with and who genuinely wants to help you and who is open to all kinds of treatments, and who, above all, admits he or she doesn't have all the answers. Because clearly no one does.

[Snowden1]

I do think that there are a wide variety of reasons why people have different symptoms and respond to different treatments. Some people may have pelvic floor disfunction. Some may have nerve damage. Some may have the bladder wall that is deteriorated. Others maybe we don't know. I do think the bladder can heal. One lady said that she was in remission for 15 years. There have to be others who don't come to this board who never knew what they had, but are doing well. I do think Uracyst (the instil used in Canada and other countries) does heal the bladder wall. There is a Dr. in Canada (I watched his conferences) and I can't remember his name right now, but I'll look it up who really feels this is heals the bladder. I do think this is actually healing some people who have bladder wall issues. But, still this doesn't help everyone because they may have nerve damage or other problems. This is just my opinion and of course I'm not a doctor, but I'm just throwing it out there.

Some people are totally better using Elmiron and maybe some other drugs. One girl on her is now eating anything she wants and is virtually symptom free. She only takes Elmiron now. But, she said she can feel it creeping back if she forgets it for too long.

Maybe someday we will have more answers and more things to help us - maybe even a cure for all. I pray for this every night.

[lonely sole]

Hi Isabel,

Yes, I believe the bladder can heal. But I also believe that if possible, and as much as possible, we need to try and figure out what got us here to begin with. I guess this is the million dollar question. As others have mentioned, "IC" seems to be an umbrella condition that may have many causes. During my time here on this board I've seen folks point to hormonal imbalances, certain drugs, swimming pools and hot tubs etc as triggers to the start of their IC. Perhaps for us IC folk our bladders are our "weak spots", and some "imbalance" in our body exposes this weakness.

So once again, yes, our bladders can heal. But we need to help our "weak spot" along as much as possible, whether that be from diet modifications, stress reductions, etc.

[musiclover]

I think there is a chance the bladder can heal, depending on what the problem is. For some people it may not be able to. But I think if it does heal, it heals REALLY slowly. I've been following the diet and taking Elmiron for a year and my GAG layer doesn't seem to be healing much. I'm not sure why that would be. I'm generally a healthy person besides having IC. So I can't understand why it won't just heal already! It's strange how IC can just keep going and going.