Mom of newly diagnosed IC patient

[OSUMom]

Hello all. I'm new to the site. My 26 yo daughter has been having UTI's most of her life, but was finally diagnosed with IC. She has bouts with terrible pain. She's a nurse and doesn't like taking pain meds, but the meds she's on aren't doing the job. She is on Elmiron and has done the bladder instills. I've been reading about the Basic and Comprehensive Interstitial support paks ( with alkalife drops, colostrum, cod liver oil, etc). Does anyone have any experience with these? Any advice? If they help, I will gladly send for them. Also, is there a way to locate docs in Cols, Oh who understand and treat IC? Any help/advice would be greatly appreciated. She's pretty special to her Dad and I.

[Babs RN]

First of all, what a great mom you are. Nearly brought me to tears. I am a nurse also and have been since 1993(yikes, has it been that long). I have been diagnosed for about five years but have had pelvic pain for a long time. I took Elmiron for a year and a half and am currently seeing a pain management doc for pain control. I still work full time. My primary doc went to OSU for med school and did her internship at Mt. Carmel Family practice, so I would be happy to ask her for you. I have also done the instills. Please PM me if you would like.

Hugs and :welcome:,
Barb

[ICNDonna]

I really feel for you; it's not fun to see our children in pain. I'm glad she's on elmiron, but it can take several months for it to do much --- those who are helped by it are very enthusiastic about it. Is she on an IC diet? That can be very important in keeping symptoms under control.

There's a lot of information in the Patient Handbook on this site that will help you learn more about IC. The "Basic and Comp. support paks" sound like another sales site; unfortunately there are many out there who prey on people with incurable diseases.

There are some reputable sites you will want to check: The Interstitial Cystitis Association http://www.ichelp.org has reliable information --- and we try to keep the IC Network spam free so people can rely on what they learn here.

I hope she feels better soon.

Warm welcoming hugs,
Donna

P.S. Is the OSU Oregon State University? If so, I might be able to find some leads to physicians.

[SharonA]

:welcome:to the ICN...

You might find a doctor by clicking on: http://www.ic-network.com/handbook/mdlocate.html

I am so sorry that your daughter is suffering so. This is a hard disease but your support is very important. Way to go, Mom!!!!!

[leelee88]

I just wanted to chime in and say hello and :welcome: I think these ladies have gave you some wonderful advice.
I will say that I am on Elmiron and am having very good results from it. It does take a few months to start working but for me it has helped along with my other meds. I hope your daughter starts feeling better soon:angel:

[Sally939]

Hi, you remind me of my mom. She has made my bladder and diet her third job. (She is a catholic school teacher and has a part time job at a Country Club). I am 29 and have been on my own since I was 18. But, IC has turned my mother back into a mom (not that she was not before). My mother has helped most by helping me with my diet and pushing me to help myself. I hate to say it but the IC diet has been a huge part of my fight to control my pain. For me at first it was crucial to always be good and not cheat with my IC diet. Also, there are meds that help with pain that are not narcotic pain meds, like elavil and tofranil. How would she describe her pain? Is it pelvic pain like cramps, burning or urgency?

[dancemomof2]

:welcome:and bless your heart for reaching out to help your daughter. THe girls have already given you great advice and sites to get info.

[LeeAnn]

You're a good mom. I wish my family were supportive enough to read about IC on their own. I feel alone sometimes and since I never complain about my bladder problems they seem to forget I even have them at all. Sometimes I have to remind them of my IC, like when I insisted that I sat on the outside aisle seat at the movies. They seemed annoyed they couldn't sit dead center in front of the screen and were put out that I didn't want to interrupt a row full of people w/ 3-4 bathroom trips. My husband is supportive and understands but my mom and dad don't seem to have a clue how devastating this diagnosis can be and how terrible the pain can be at times. Your daughter is lucky to have you in her corner. I think it's so wonderful that you're trying to learn more about it. Is OSU Ohio State?

[kuntrygurl78]

I think you are a very sweet mom!

I think everyone here has already given some good advice.

I just want to send a friendly jab your way. I think you said you are from Columbus OH, and your sign in name is OSU mom. I assume that means Ohio State? Well, let me say that Im a HUGE Illinois fan. :evilsmile Great football game between the two teams a few weeks ago! I heard that the fans from OSU were so friendly and congratulatory towards the Illinois fans that were at the game. Big Ten basketball season is coming up soon. Cant wait!

I hope that you are able to find the information that you need on this site. Im 29 and this site has been wonderful not only for my IC but for me as a person.:hi:

[karen10]

What a wonderful mom!!! :smile tee I've had good experience with (and read lots of good results from others) about some natural supplements, mainly desert harvest aloe, glucosamine and MSM, as well as cystoprotek! Keep checking back here, this is a great place to learn new things!

[maryla]

Go Bucks! What a great Mom you are. I live North of Dayton and go to see Dr. Rackley at the Cleveland Clinic and I have a great team of uros in Cincinnati. Pm me and I will give you their numbers.

God Bless,

[lisabar36]

you really are a great mom! This site can be very helpful as I think you have got some great tips! I am also a nurse, I didn't want to take a any pain meds. I asked the doctor to give me the mildest thing he uses for IC pain.

[OSUMom]

Thanks for your nice reply. I am a neonatal nurse practitioner, but feel so helpless with my daughter's condition. She is so active and happy in a great relationship- I just hate that she is going through this. I will watch for any suggestions and am willing to try anything, if she is. Good luck to you also!

[Tracie]

:welcome: You have come to the right place. It is great that you are reaching out for the health of your daughter. My mom has IC since I can remember. Growing up she always had me using dove soap, and perfume free laundry soap, and always telling me to get out of my wet swim suit. Now that I am older, I understand everything she told me. I now give her advice about the IC diet, and other things I have learned from this wonderful site. I haven't tried anything you metioned from the support pack. I just started MSM and Glucosimine(sp), and ordering the MSM gel (I can't go everywhere with an ice pack between my legs!) I will post if any of theese work for me.

[Bessie]

:welcome:
You are such a sweet and caring Mom :)
Like all the others have said.....there is so much information and advice on the network. It is amazing the wealth of knowledge that we have here. I hope your daughter can find something that helps her with her symptoms.
Take care,
Laura

[OSUMom]

Thank you all for your advice and support. Our computer crashed and burned last week, so we feel out of the loop. I'm at work so I will make this quick. Our daughter is trying to adhere to the diet (her boyfriend is great at helping her), and it seems to be working! She only had 2 minor flare ups last week. I am soooo pumped that she is feeling a little better. She loves this site and I think she is registered. She is using the resources and doing a lot of reading. I have downloaded some info for her and us- and have started a notebook. Lots of good stuff. We're all encouraged and cautiously optomistic. My husband and I hope to get a new computer from Santa- so we can stay up to date with everyone. Take care!!