Should I get a Hydro??

[Whyme?]

Sorry this may be long...

I was diagnosed with IC about 4 year ago based on symptoms only. My symptoms (based on everything I have read) seem to be fairly mild. I am on Vesicare and it works really well for me - most of the time. Last year for approx. 9 blissful months I was in remission with meds.:woohoo: In October, I had a flare for about 5 days. Then in November for about 10 days. Then, on Christmas day, I flared again and it lasted for over a month. I talked to my dr. over the phone, changed meds, etc... nothing seemed to be working. Eventually I made an appt. and went in to see him. Of course, urine was clear. He was very sympathetic and changed my meds again. He also suggested a scope with hydrodistention IF my paid continued. We set up the whole thing for mid-March. I tried the new meds and they helped the paid but didn't completely get rid of the frequency, so I switched back to the Vesicare. I felt better within an hour and I have been symptom free for about 2 1/2 weeks. During that time I have to mention that I have read a lot of info. on this site especially about the IC Diet. I have seriously changed my diet which I am sure is helping a great deal. I also now have a better understanding of why I flared in October, November and December. Lots of chocolate at Halloween and tea because it was getting colder outside and numerous other foods that are definate no-nos. So, here is my question - should I continue on my new "diet" with my current meds. and forgo the scope w/hydro (for now) or should I go ahead and do it? One of my biggest fears is that I could possibly make it worse with the hydro. Any advice would be very welcome!:help:

[ICNDonna]

I can't tell you what you should do, but if you are still symptom free when your surgery date is closer, you could talk with your doctor about either postponing or cancelling it. I am one who is helped by hydrodistention and I wait until symptoms return and won't go away before I have one.

I hope you continue to feel good.

Donna

[SandyRN]

Welcome to the board. I think Donna made a good point. You may want to continue as you are for now and see how you do. Some people are definitely helped with a hydro and some people are not but either way it can give you a definitive diagnosis. It's impossible for us to answer that question for you, but you sound as if you have things under control for the moment and I'm not sure if I were in your shoes if I would rock the boat.

Hope this helps, Sandy

[GriffsMommy]

That really is a tough choice and one that you should discuss with your dr. If you continue to feel better than I can see why you wouldn't want to have they hydro and possibly stir things up again. I would check with the dr though because he might want to have a look at your bladder while distentened even if you aren't have many symptoms anymore just to get a feeling for how bad your bladder is. On the other hand he may have just scheduled the hydro for you because you weren't getting better with med changes and thought it might help. He may no longer feel the need to do it now that you are feeling so much better. I had mine done to diagnois me and it didn't help or hurt me in anyway. I had increase in pain and symptoms for the first few days afterwards and then went back to my normal pre-surgery symptoms. It's good to hear that you're feeling better no matter what you decide to do.

[RWadeJ]

I'm in the same situation right now. I have had IC since April of 2005. I did have an in-office cysto done (never again, way too painful) and my bladder could only hold 200cc while I was awake (and I felt ready to burst) which my new uro said should have been enough to dx me at the time, but that uro I was seeing then was horrible - he just told me to go home and take tylenol. He wouldnt prescribe any IC drugs.

Anyway, I started Elmiron, Vistaril and Elavil Dec 2005 (prescribed by my GP), and did pretty well for about 6 mos until the Elavil started causing really bad heart palipatations, so I stopped that but continued the other two. I still continued to do well, but in Nov 2007 I started feeling worse again.

The uro I am currently seeing put me on a round of cipro first, since I've had many re-occuring BV infections. It didnt seem to much for me,though .So now she just started me on Ditropan, and I am scheduled for a cysto with hydro mid March.

She also told me if I feel significantly better I can postpone the hydro. She said she most likely will be doing it more as thearuputic rather than diagnositc, though of course if they see anything unexpected they could biopsy it, but she said most likely if its the IC she suspects, my treatment wont change.

I have the same fears, I don't want to reverse and progress the Elmiron has made, so far the doctors tell me "it shouldnt".

So, for now I'm playing it day by day, and I'm staying on the schedule for the hydro, but if I feel 100% one of these days and continue to feel better, I may postpone it.

Another reason I'm leaning more towards having it done is she said she would refer me to a pain management dr and also to a dr who could possibly prescribe something other than Elavil for pain. But she doesn't want to do that until I have the distention.

So I really understand what you are saying!
Janice