Is IC a progressive disease??

[PirateIsabelle]

Hi everybody,

This is a question I'm very concerned with, and nobody (physicians or the IC Survival Guide) has been able to answer it yet to my satisfaction. Is IC a progressive disease - that is, if I decide to eat or drink something acidic, will I just make my symptoms flare for awhile, or will I contribute to further bladder damage in the long run?? If you can shed any light on this, that would be great.
Thanks,
Liz

[SharonA]

IC is not necessarily a progressive disease. It can be for a small percentage but not for everyone.

About your question regarding eating something that would hurt your bladder...Why would you even want to do that or take that chance? I know that I don't ever want to be in the type of pain I was in when my symptoms were so bad. On the pain scale of 1 - 10, that pain was a 20!!!! I am not exaggerating here, it really was that awful. "Awful" is not even close to what it was like. I don't have the words to describe the pain.

Because of this site and the IC Diet, I learned that I can not eat Citrus fruits or drink Citrus drinks. If I did, I would chance having that type of pain once again.

I love oranges and orange juice. Just the thought of them makes my mouth water. When I was growing up in Central California, I used to go out into my parent's back yard and pick oranges right off the tree and eat them right then and there. Oh how wonderful they were. Now, once learning that it is like pouring acid directly into my bladder, there isn't an orange grown that is worth risking that kind of pain, ever again even for a little while or permanently. They are not a part of my life now. Don't get me wrong, I do miss them, but not enough to put them into my body and risk damaging my bladder to the point it was in the beginning.

IC is like having a open sore on your hand. Would you intentionally pour a substance on the open sore that would cause such pain that you were climbing the walls just because it smelled good? I know I wouldn't and I don't think you would, either. I would do what ever it took to make sure that the substance comes no where near my hand for the rest of my life.

I don't know if this answers your question or not. I just hope it convinces you not to take the risk. (((Hugs)))

[jen74]

I think IC is different for everyone and everyone's cause is different. This is why everyone has such a difference is symptoms. Some people are effected by diet, while others are not. I know a women who has severe IC and she can eat chocolate, drink coffee, juice, it does not matter either way. I am very diet sensitive, unfortunately.
I use to wonder if my IC was going to progress, but I gave up asking doctors becuase the matter of the fact is that they have no clue. They do not even know what IC is let alone if it will get better or worse. It is a very frustrating disease, that is for sure.
Jen

[ICNDonna]

Only a very tiny percentage of IC patients progress. My IC was diagnosed in 1975 and if anything, I am better than I was then.

Donna

[PirateIsabelle]

Sharon,

The reason I ask is because My IC is fairly mild and my pain is not that bad - never more than a 6-7 on a 10 scale. My main symptom is urgency - 20-30 times a day usually, and 5-6 times a night. Therefore, sometimes it's worth the increase in frequency (5-10 times more a day) to enjoy a food or drink I really like. If I was in your situation with pain that bad, I definitely wouldn't be asking this question! :-) But, if indulging occasionally is going to actually injure me instead of just irritating the symptoms, then I won't. I haven't been able to get a concrete answer on this question, although what you said helps some.

Thank you so much,

Liz

[PirateIsabelle]

I guess I'm most concerned with...does it progress due to diet choices? I've only been moderating my diet since I was diagnosed in March, but it does seem like a lot of foods irritate my bladder...

[Claredale]

I don't know if I can answer your question. I am one of the few that my IC did progress. I was initially diagnosed with mild to moderate IC 20 years ago. My main problems were freq/urg and retention. I had pain only when I had flares for the majority of the time. I went into remission after a few years. I did stay on my diet though since alot of the same foods that flared my IC caused my Eczema to flare. One day, my remission was over and my symptoms were worse several times over, especially pain. My doctor did another hydro and found that my bladder couldn't hold under anesthesia (back then I didn't know to ask the amounts, but he said the my bladder was very scarred and said I now had severe IC. I can't think of a thing that would have caused it to be damaged, especially since I had just been in remission.

Now my symptoms are greatly improved since I am finally the right combo of meds. Even though I feel so very normal much of the time, there is no way in the world that I would intentionally eat something that I knew would cause pain. Like Sharon, if I even had a drop of lemon in my water, I know almost immediately. I am so paranoid about citrus, they when I am in a restaurant and order water with no lemon, I always run my finger around the edge of the glass to make sure that they didn't just pull the lemon off. I always tell the waiter that I am very allergic to anything citrus.

T83

[mlzippy7]

As far as IC progressing that is a question where no matter who you ask I think you will get a different answer.
We all have different levels of IC. From minor to life debilating.

I am one that my IC continues to progress. From what I have found out MOST people DO NOT progress with the extent of their IC.

I wish I could tell you yes or no to your question but I am sorry I can not.

I hope you can find things that work best to fit your needs.

Best of luck to you!

[momtoSM]

Liz,

I had the same question and worry as you do. After I was diagnosed with IC in Oct. 07' I became very depressed and didn't eat or drink anything that was listed outside of the generally ok list on the IC diet. I didn't have a bite of chocolate (or a lick for that matter) or any fruit or tomatoes, pizza, etc..... for 3 months. I lost 15 lbs. ended up seeing a counselor and getting on celexa. My first uro that diagnosed me didn't really educate me on IC. He just said that I have it (after doing a hydro-distention) and to avoid acidic and spicy foods and caffeine. Of course this led me to the web were I was horrified at all the info I read about it and then I finally found this website, which was the start for me getting better. I learned the diet and stuck to it. I also wanted a second opinion so I saw another Uro. I asked him if eating certain foods would cause my IC to get worse or cause more sores in my bladder. He said "no". I felt sooooo much better after that appointment. I started trying little bits of things (bananas, grapes, chocolate, ketchup, pizza, mayo, salad dressing, peanut butter, jelly, sour cream etc.) and nothing seems to make a difference. I do take Prelief with some foods and do scrape the sauce off my pizza, but overall I think I'm finding that I might not be too food sensative. I'm still very leery about soda and coffee -don't drink it at all, and I still haven't had pasta with tomatoe based sauce or an entire piece of fruit (other than grapes). I am also now on Hydroxizine (Atarax) and Amitriptyline (Elavil) along with doing PT.

I know others are saying that IC can be progressive, but for me it hasn't been so far. I had these same symptoms four years ago for 6 months and then it went away for 4 years. When it came back last summer I had the same exact symptoms as I did four years ago. Frequency and urgency (at least every 2 hours) and waking up 1 to 2 times a night.

For now I take comfort in my Uro's words and just take one day at a time. Prayer is very helpful as well.

Blessings,
Erika

[snowgirl]

easy question progressed over 22 years. Capacity 500cc down to 175 last hydro a week ago a big 300cc year:angel: but due to the fact I am not working and on SS?LTD disability. So from work to no work. Vicky

[VickiB]

I've been dealing with IC since the mid '70s, but didn't learn about the diet until 4 years ago. For almost 30 years I unknowingly continued to eat & drink things that were problematic, yet it did not progress.

I know my IC is still 'here', just waiting to pounce. I'm pretty sure it's the diet that's keeping it quiet.

I have a feeling that the progressive question won't be answered until they get a handle on exactly what IC is, and what's causing it.

Vicki

[mary124]

When I was dx in 1992 I had Mild now its severe- so yes to your question, but like others said, you will get different answers out of all of us. My IC probably might of stayed mild if I heard about the diet? I don't know, if fact didn't know about it till about 4 years ago when my doctor retired and the one that took his place told me about that and a few other things; since then I feel a little better.

[blondie45]

I agree with Donna. I have had IC about 20 years now and I also am probably better than I was then, but I have learned over the years what foods to stay away from, have retrained my bladder, etc., and with time you will find what works for you too, so please try not to worry about IC being progressive.