Help! I need a need docter

[Dbann]

I am new to the ICN this is my first post so I am kind of slow at this. I have had IC for about 12 years now and my wonderful urologist has died. I am feeling totally lost, I can't find another IC doc my area. I live right in between Peoria and Springfield Illinois, if someone could recommend a IC doctor in this area I would appreciate it so much. I am willing to drive an hour or 2 to get to a good doc.

[kuntrygurl78]

Dr. Burstein at Dekalb Clinic in Dekalb is WONDERFUL! I see you are sorta near me. Im near Champaign and Bloomington. Hope you feel better soon!

[Dbann]

Thank you so much for your reply, it's comforting to hear from someone close to me. Dekalb is about 3 hours from me, my husband already looked him up online. I have heard other IC patients rave about him also , I will definately consider going to him. I read from an older post someone liked Dr Regan in champaign so I am going to him first since he is only a hour and a half away.
Thanks again!

[kuntrygurl78]

i was diagnosed by Dr. Regan. I live 30 min north of champaign:-)

[Dbann]

Was he good at treating Your IC, I was just wondering since you switched doctors.

[kuntrygurl78]

I came on here and read about Dr. Burstein. I have friends in dekalb so I don't mind the drive. I haven't been there since before my pregnancy. I'm mostly in remission and not on any daily meds. My gp has given me a pain Med to take when needed that is safe since I'm breastfeeding. If I need to go back on meds in the future I'll probably start with my gp and if it gets too much for her I'll go back to Dr. B.

[Dbann]

I am going to try a different doctor in the group that my IC doc was in. None of the other docs specialize in IC like mine did but I'm hoping they will let me stay on the same meds that have been working for me. Everybody else I have tried wants to change my Meds and I don't want to do that since what I take works. I take 250 mg of Amoxicillin a day and 10 mg of vesicare along with some homeopathics and I also drink only purified water and watch my diet and My bladder stays pretty calm most of the time. :angel:

[kuntrygurl78]

im on day 3 of a flare. I've never had one last this long. I just did some research. There is a group of urologists in normal. Their website says they treat ic and one of their docs even comes to Gibson city. I think Im going to call them tomorrow and make an apt. I LOVE Dr. B but now that I have kaleb I'd rather nt have to drive to dekalb. I'll let you know what I find out.

[Dbann]

I am sorry you are having a bad flare I really hope you feel better soon. I know what you mean about driving all the to Dekalb, it's a 6 hour round trip drive for me. Normal would be much closer, definately let me know what you find out about the doctor there. That would be great if we had a good IC doc close to us.:pray:

[kuntrygurl78]

I have an apt Wednesday. When I called today, they said the NP specializes in IC. Lets hope he can help me! Ill keep you posted!:pray:

[Dbann]

I was anxious to hear how your appointment went with the new IC doc, I hope well. Sorry it's taken me a while to respond back to you. I've been having some issues with the Vesicare that I've been taking, works great at keeping my bladder calm but causes me to retain a lot of fluid. It's hard for me to get around my legs feel like lead weights, started taking 5 mg instead of 10 mg my legs feel better but my bladder sure doesn't. Not sure what to do about that, anyway I hope you liked this new doc and you're feeling better. :angel:

[blondiee30]

I had that problem with Vesicare too. I switched to Sanctura XR. I'm not sure but I think Vesicare worked better. :puppy:

[Dbann]

I was taking the 5mg of Vesicare for quite a while without too much trouble- I had some fluid retention but could live with it. Then I flared really bad so bumped up the dosage and boy then I had the lead legs. I may try something else but I'm hesitant I'm really sensitive to medications so I can't take very many. I'll probably just stick with the 5mg for a while and see how it goes.

:flower:

[blondiee30]

I was taking the 10 mg. tablets. My left ankle would swell and retain fluid every night. Have you tried any other types of treatment for ic?

[Dbann]

Over the last 12 years that I've had IC I have tried Elmiron, bladder installations and Detrol and found I couldn't tolerate them very well. I'm real sensitive to medications I do better just really watching my diet, drinking purified and taking Vesicare. I do pretty well most of the time.:angel:

[kuntrygurl78]

Doc apt went very well! My apt was at 10 with the APN. His name is Alan. Really liked him. I came back later in the day for them to do an instill. I had to wait because we had to get approval from my ob because Im breastfeeding. I had another instill today, and will have a third on Tuesday. I love all of the staff there!

They were very willing to work with me and do what they could for pain control. I didnt get any negative remarks about breastfeeding. Im always afraid someone will just tell me to quit cold turkey so that I can just take the easy way with pain meds and treatments. There are IC treatments that are bf friendly and Im glad this place knew that!

I also asked if they teach people to do these instills at home. They do. If they work for me, then I would like to learn. Im a CNA so Ive helped nurses with catheters lots of times. It doesnt scare me. Id rather just do it when the time was best for me rather than have to drive to have them do it.

Here is the website for the place I went to:

http://www.urologicsurgeryassociates.com/

I saw Alan Glatz

[karla9]

I know I am responding several months later...but I just found this post and am thinking we may have shared the same urologist who passed away. I was devastated when mine, Dr. H...passed away this year. He started my treatment before he passed away. He seemed so brilliant and caring. I am currently seeing another in the practice, but he doesn't seem to understand the disease as Dr. H did. I am lost now too.....I need to find an Illinois doctor who will help me with pain management and understanding of the symptoms. I am just curious as to where you have went for your treatment, as we appear to live in the same area.

[jamieb]

Hi- I see you've worked wi Dr. Bernstein and he is not too far from me and I need a new uro. Wuld you mind sharing what kinds of treatments you'd used with him? Years ago I saw him and he recommended some instillations- but shortly after with my then uro- I got DMSO and had a bad reaction, that was 10 years ago! But I'm still Leary of instillations:( I know I need to try them as they are something new for me in my treatment plan. I just wanted to know if he worked with medications, interstim units or sacral nerve implants, etc. I've had IC a long time and y old uro considered it severe.
Thanks for any input y can give me
Thanks!

[jamieb]

Dear Karla-
Did you ever find a Uro in Il who worked well with IC? I need a new doc:(
And if you did- would you mind sharing what he/ she was able to work with?
Thanks!
Jamie