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**Cricket** · 05-17-2002, 02:59 PM

Hi {{{{{Jen}}}}} [img]smile.gif[/img]

Welcome to the ICN! [img]biggrin.gif[/img]
I'm so glad you found the ICN, it's a great place to find information and others (a family of friends) who understand what you're going through.

I was just getting ready to email you when Jill Osborne (the ICN founder) called to tell me about the updated EC Resource page. If you haven't checked it in the past couple of days, go back and check it out now. Jill's done a super wonderful job!! You can read my story there. Also check the ICN patient handbook. It's geared toward IC patients, but a lot of it is also helpful for EC patients.

Have you or your brother, ever tried steroid treatment? Most EC patients are helped by taking steroids. Do you have allergies, or other eosinophilic disorders?

There's a doctor in Utah, Dr. Gerald Gleich, who is working on new EC treatments. You, or your doctor might want to contact him to get more info. He's looking for EC patients. Dr. Gleich's email address is on the EC Resource page.

The URL is http://www.ic-network.com/ec/

Be sure to sign up for the newsletter. There's a section with EC updates. It's free, as is all the info at the ICN. Becoming a subscriber is encouraged, but not mandatory. Each subscription helps to keep the ICN online, and also helps others who have bladder disorders.

Again, WELCOME TO THE FAMILY {{{{{Jen}}}}}

I'll keep you in my prayers.

With Love,
Cricket

**Jen_Cole** · 05-17-2002, 05:13 PM

Thanks, Cricket and Jill! Actually, I know my brother has taken steroids before, but I don't think it was to help his EC-his bladder hasn't worked on its own since he was three. I am still nagging him to get on here, but he's a busy person!

I did email that Dr. in Utah a couple of days ago-hopefully he can help us all. This condition is such a life-changing situation-makes me think that I sometimes take too much for granted. Well, I will read the new stuff tomorrow-thanks to everyone for all the warm wishes!

**Jen_Cole** · 08-01-2002, 12:59 PM

Lemme just say that I meant eC, not es!

Cricket-I need to ask you a question-how are you managing? In terms of medications, or do you even use your bladder? My meds have not worked in about 6 weks-I am on bactrim, pyridium, tofranil and ditropan. At first my uro upped the milligrams on the tofranil, and that made a difference for a couple of weeks. After that I was back to square one. My frequency now is pretty bad-I have had accidents and I am at that "fed up" point. My uro is hard to get ahold of, so I was wondering if you could make any suggestions on meds that have worked for you? Then maybe I can pass the ideas along to him.
Thanks bunches!
Jen Cole

**lmeyers** · 08-17-2002, 08:43 PM

Hello all,
I am new to the board. I have ahd IC for 20 years now, and was diagnosed with probable EC.. I am seeing Dr Gleich here in Utah at the U.. He is very helpful, and nice to talk to. I am starting my Instilations this coming Wed. I am not nervous, accept for the fact I will be having these every day for 2 weeks, the 4 times a week, and so on.. I also have to keep the cocktail in for 3 hours.. Dr Gleich calls this his concocktion (sp) not a cocktail, he is so funny.. he called me yesterday to tell me that my blood count in my urine was suvstantial, anyone who can tell me more about the blood part of all of this I would be grateful to you.. I will let all know how Wed goes,, <img src="graemlins/hi.gif" border="0" alt="[hi]" />

**lmeyers** · 08-17-2002, 08:49 PM

Hello all,
I am new to the board. I have ahd IC for 20 years now, and was diagnosed with probable EC.. I am seeing Dr Gleich here in Utah at the U.. He is very helpful, and nice to talk to. I am starting my Instilations this coming Wed. I am not nervous, accept for the fact I will be having these every day for 2 weeks, the 4 times a week, and so on.. I also have to keep the cocktail in for 3 hours.. Dr Gleich calls this his concocktion (sp) not a cocktail, he is so funny.. he called me yesterday to tell me that my blood count in my urine was substantial, anyone who can tell me more about the blood part of all of this I would be grateful to you.. I will let all know how Wed goes,, <img src="graemlins/hi.gif" border="0" alt="[hi]" />

**MelanieJ** · 08-21-2002, 12:18 AM

Hi and welcome, lmeyers! We're so glad you found us here at the ICN! We've got two ladies, Jen and Cricket, on the boards who have EC. I'm sure they'll be glad to chat with you on the boards.

I have IC, not EC, but wanted to say "howdy" and let us know how you're doing!

Sending healing wishes,
Melanie J.

**Jen_Cole** · 08-21-2002, 01:10 PM

Imeyers-hello. I don't think I can help you on your question(but I'm sure doing a search on that word will get you an answer) but I can tell you that the combination of meds I was on (ditropan, tofranil, bactrim, and pyridium) helped me-at least for awhile, anyway. I do hope your instillations work well for you. I am probably headed down that road eventually! I emailed the doctor you are seeing and told him about my brother and I (he has ec as well, but had surgery about 27 years ago-long story!) and I can't remember his reply-but I live near Chicago and see a wonderful urologist there. Please let me know how you are doing-and if you have time, drop by the chat board!
Jen

**Jen_Cole** · 08-25-2002, 01:59 PM

Imeyers-I reread what I posted to you-I don't think I meant for you to do a search on the word "substantial"! I have no idea what I was thinking!
Jen

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