Colorado

[A.J.]

since I'm moving back home to Denver, I wanted to know if anyone lives near there. and also, I've been trying to find support groups. if you'd like to talk about this please reply or PM me. thanks a lot!

[rjyoon]

I'm in Colorado. I don't know of any local support groups.

[betterthanb4]

Hi. I was interested in your post...I have IC, intermittent fibromyalgia, osteoarthritis, and what has been called purpura, too. Am 53 years young. I have had great luck controlling IC mainly through dietary control without resorting to heavy meds for about 7 years now. But this morning I had a severe attack. Could not get a referral to an IC doc locally. None of the urologists I was referred to could 'fit me in' earlier than next week. Ha. I was really desperate. Finally self-medicated with quercetin and bromelain, and can now finally leave the restroom 5 hours later and straighten up long enough to post here. Can you recommend a good holistic IC specialist in the Denver area? I mainly need help with the occassional flare-up so I don't want to go on elmiron if at all avoidable.
Can you also tell me about the purpura? I have red dots everywhere. They seem to worsen or increase depending on what I eat, but noone has been able to explain it to me beyond that they are miniscule blood clots...A couple of docs told me that it was purpurea then changed their minds when they heard how long I have had it, adding that it would have been fatal to me by now if that's truly what it is.

Many thanks in advance for your help!

[rjyoon]

No, I don't know of any holistic IC specialists. While I tried accupuncture, diet change & Chinese herbs for awhile, my IC didn't change, so I'm not going to recommend that person.

If you have purpura, I would recommend finding out what's causing it. Usually a simple blood test (complete blood count = CBC) can help figure it out. No, pupura would not necessarily be fatal, although my ITP could be fatal if not monitored & treated. A hemotologist could help with the proper diagnosis & treatment, if any. It's at least nice to know what to watch for.

[Nonna]

I'm also in Denver and there are several of us who have been looking to start a support group here. If you are interested, please send me a message. We've had a hard time putting a group together even though it seems that there are a lot of us here in Colorado. This board has been a lifesaver for me and I've gotten names of wonderful resources that I would love to share with others. HOpe to hear from you soon, Nancy

[A.J.]

Well ladies, I am just at the end of my rope. I'm in Denver and I was seeing a doc at University Hospital for quite some time and then she moved. So I had to find a new one (been through a couple so far) and what they're doing is NOT helping me. I'm so desperate, my parents are thinking of traveling to another state just to get some help. Any suggestions? If you live in Colorado and have a great doctor that helps with your IC, PLEASE PLEASE PLEASE contact me. I need help with pain and yeast, and since my brother passed away only a month ago, my symptoms are through the roof from stress and grieving. Thanks so much for your help. I don't want to have to go somewhere else for treatment...even though I plan on moving out of here after college.

[icnmgrjill]

Please see the "new" colorado support group we just added to our list!! That would be a good place to connect up with others!!

Jill

[WENDYK]

Dear Jill,
We Have Informally Been Trying To Start A Support Group Here In Denver, But Have Not Had Much Luck. So I Am Really Curious About This New Support Group And Who Is Working With It.

Thanks,

Wendyk

[WENDYK]

Hi Nancy,

Hopefully We Will Finally Have Enough People To Meet For A Support Group Here In Denver. Let Me Know, If You Find Anything Else Out. I Look Forward To Talking To You Again, Very Soon. I Have Been Thinking Of You Lately. Hopefully We Will Meet Up Soon.

Thanks, Wendy

[WENDYK]

Dear A.j., I Live In Denver And Use Dr. Nel Gerig. She Practices Out Of Denver Urology Clinic, Located At Healthone Rose Hospital I Have Had Ic For About 15 Years But Diagnosed About 10 Years Ago.
She Is An Absolutely A God Send I Could Not Imagine Dealing With This Disease Without Having Her There By My Side. Also There Is Dr. Daniel Brookoff In Westminister, And He Has Been Involved With Icn For Years And Has Done Guite A Few Interviews And Articles. He Is Wonderful, And An Absolutely Incredible Asset To Us In Denver. If You Want To Pm Me I Can Give You Both Of These Dr's Numbers, Or Just Be There To Talk. Please Keep Holding On, There Is At Least Some Sunshine On The Horizon.

Wendy K.

[andypan]

AJ,

If, by University Hospital, you mean Univ of Colorado Hospital, you might go see Dr. Brian Flynn. He works out of the Aurora campus. He is young, but he is willing to learn about IC. When he couldn't help me, he knew to refer me to see Dr. Payne at Stanford. Dr. Payne diagnosed me as having Hunners ulcers, and surgically removed them. Since then, he has advised Dr. Flynn who has performed the surgery on me (I have the ulcers removed every year to year and a half.

He has also been in communication with Dr. Moldwin on the east coast. One of Moldwin's patients comes here to ski and occasionally needs an instillation, which Dr. Flynn performs in accordance with Moldwin's formula. Flynn has told me that he now uses the Moldwin "cocktail" on many patients and I will try it for the first time next month.

In case you don't recognize the names Payne and Moldwin, these are two highly respected and knowledgeable physicians in the field of IC.

Good luck!

Andy

[rjyoon]

I have mixed news to report on Dr. Flynn. I consulted him for a second opinion prior to agreeing to Interstim surgery. Later, I lost my job (& insurance), and had to use my husband's insurance, which was with Dr. Flynn's office. Dr. Flynn's office told me that under no circumstances would they ever see me again, not Dr. Flynn, nor anyone else in the office. They would not explain why. The insurance got really mad & said that they had to see me, as they were under contract to do so. I thought that the insurance would straighten them out. I was wrong; they caved but still no one would tell me why. Maybe because I was already implanted with the Interstim? Maybe because they were annoyed that I didn't pick them after the second opinion? I'll never know, but I do know that when I was desparate to see a uro for treatment, I was refused & given the run-around for days. I never want anything to do with the office again, as I certainly don't trust them now.

[FrankieBee]

Hi - Yes there is a support group in Colorado - we meet a woman named Nancy's house who used to be a support group leader in Ohio - She's really nice - She lives in Firestone which is a small subdivision between Denver and Ft. Collins. There are 4 meetings a year - 2 in the Fall and 2 in the Spring - the next mtg is scheduled Mon March 5th - Nancy's number is 303-485-7349 - if you are interested - Only a couple of people were there when I went, but it was nice to meet other people experiencing the same kind of problems and talk about coping strategies. I think the more people the more beneficial the meetings would be, so spread the word!