need help for my husband

[rhilyn]

My husband was recently diagnosed with IC. A doctor told him he had all the symtoms. The Doctor handed him a pamphlet that told him what to eat and what to not eat. Then sent him on his way. Most of the information I have found online addresses Ic for women. I would appreciate any help someone could give me to find information to help my husband. He has followed all the food suggestions but has had no relief from his pain.

[ICNDonna]

There are many treatment options for IC. From what I've been reading, IC is treated in men with most of the same treatments given to women with IC. If your husband has seen a uro who doesn't treat IC, my first suggestion would be that he see another urologist for a second opinion.

If you go the Browse Our Site pull-down menu at the top of this page, you'll find a link to a list of physicians who have been recommended by other IC patients.

I also encourage you to read the information in the Patient Handbook (the link is on the pull-down menu).

There are some things you can do to help. Most important is understanding --- IC patients don't usually want sympathy, but it certainly helps to have family members who understand the disease and its challenges. And be sure there are IC safe foods on your table.

And when you have questions, feel free to post them here. We aren't physicians, but are happy to share our own experiences.

Warm hugs,
Donna

[Ronald]

As a male who has had IC now for 10 years, I would suggest first thing, get some decent pain killers, I don't mean over the counter meds.,something like Oxycodone etc.
Next if he does not respond to anti-biotics or any of the other meds. I would have bladder installations done at once, don't leave it go for to long as it will get worse.
I wish I had done more earlier because mine is hopeless now, the Uro. even suggested a cystectomy at one stage.
It has only been lately that it has been brought under control with BCG installations.

Anyway Good Luck and I hope you can manage.

Ronald toilet

[michaelh]

Ronald

How and what do the BCG instillations do and is available to the public in America?


Michael

[Tina Nacho]

BCG has not yet been approved by the FDA (here in America) for the treatment of IC. This drug is currently approved to treat bladder cancer.

I am currently in a BCG study (260 patients) that is determining its efficacy. The results should be out sometime late in 2004. There was a smaller study done (just 18 patients) that seemed to have some good results, but it isn't the magic cure some hoped it might be. BCG is a weakened form of the cow tuberculosis bacteria and this drug must be administered carefully to avoid massive infections throughout the body.

Reseachers who have been looking for an autoimmune link to IC are beginning to find that there is less and less of a possibility that IC is autoimmune related. My physician, Dr. John Warren at the University of Maryland, is a researcher of IC and is the one in charge of the BCG study I'm currently enrolled in. After this study is completed, he will be moving on to research related to the role of genetics and IC.

If you have any questions related to BCG treatments, let me know.>Tina

[gwyn]

please do read the patient hanbook as suggested by donna...
keep us updated...
i will be praying for both of you grouphug

[Ronald]

Michael, Tina has pretty well covered what BCG does it is like everything people react differently from others. I can't be 100% sure but I believe that a small amount of Radium is added to the mixture and the infection is more a problem for nursing staff more so than the patient.
I have had 5 Bcg's installed and each time I find it is just a little better than it was before, it is not a cure but if you respond to it you can dramaticly reduce the pain level.

Ron PS It is approved in Aussie.

[louise]

Hello,

I would like to recommend Dr. Robert M. Moldwin's book "The Interstitial Cystitis Survival Guide" to both women and men diagnosed with IC. But particularly for men looking for some information and answers I would strongly recommend you check at your Library for a copy of this book or look at one in your local book store to see if you feel it would be beneficial to you.

I know as a female with IC for many years I have found Dr. Moldwin's book to be an excellent resource for IC and other conditions that can accompany it. He discusses diagnosis, treatments, alternative treatments, medications, pelvic floor dysfunction, etc. I just think it is a great book for anyone suffering with IC. In fact, mine is beginning to look a little ragged around the edges from so much use!

I hope you will also find it to be an excellent resource on IC.

Louise

bunny bunny bunny bunny

[Hangin' Tough]

I am a male diagnosed with IC about 3 months ago. My uro has done cystoscopy about 4 times. He has sent me for CT scans and the whole nine yards. I try to explain to him the pain that I suffer, but he just says "I can't find anything that would be causing your pain". I think he is not very well versed on IC. So I get no pain medication. I am going to go back to my family doctor and see if he will help me in that area. I think the uninformed are reluctant to believe that the pain is that severe. I have had 13 kidney stones...I know pain. Have a great day and keep on keepin on.

[auntiedeb]

Hangin tough, I suggest you find another uro who knows ic and is willing to help you in that area with pain meds and medications. Are you on any medications for your ic. I know kidney stones. I suffer from them too. they are painful. Let me know how you make out.

[Hangin' Tough]

I am currently takin elmiron, elavil and hydroxyzine. The elavil is difficult for me to take. Makes me wake up like a zombie. But still haven't convinced the uro that I am in constant pain. I am working on it though. I have just found someone who specializes in IC here in San Antonio and will probably schedule an appt. soon. Thanks for the concern.

[Tim]

Hangin' Tough,

If you don't have any luck with your doctor in San Antone, there's a specialist up here in Austin that runs an IC support group and is supposedly very well informed and does a lot of research. His name is James Reeves. My uro recommended that I go see him instead.

I was officially diagnosed with IC yesterday.