I Just Don't Understand...... [Archive] - Interstitial Cystitis Network Support Forum

weezer

10-08-2006, 01:09 PM

Hi everyone in Canada: My name is Weezer, I live in Ocean Park, British Columbia, and I just can't figure out why there is "NO" activity on this site. I know that there are so many people thoughout Canada that are suffering with IC, PFD, IBS, etc., but there is never any action on this site. I was in the hospital 4 day's ago having a hydradistention, and there were 5 other people there for the same thing. This was at Vancouver General Hospital, and all 6 of us got talking and one woman I spoke with was in tears that there was no one to talk to about this devastating disease, she felt so alone, and to be honest she said she sat at home (alone) thinking she was the only person going through the pain, depression, anxiety, etc. of being afflicted with this terrible disease. And I know how she feels, because I have been in her shoes so many times. None of these people knew of the ICN Forum from the U.S., and then when I told them there was a site for Canada, they couldn't believe it.
I myself have been very involved with the ICN Forum from the U.S. as at one point in my life when I thought there was no support anywhere - I was told by my GP about the site in the states and thought that it would help me. And believe me - it was a godsend, and still is for me.
But I also know that there are many people sitting at home feeling so alone throughout Canada, when there are so many of us feeling the same way. Why don't we get together, and start chatting on "this" website? It really helps talking about what each other is going through, and if we stick together, just think how each and every one of us can help each other.
I look forward to hearing from anyone who would like to get their feelings out on the web, and hopefully we can help at least one person out there who needs some encouragement.
Sincerely,
Weezer

SharonA

10-08-2006, 04:26 PM

Weezer...As you can see I am not from Canada but I hope your post will cause others from Canada to start posting and getting to know each other. It really does help to be able to share with others.

:) :) :)

weezer

10-08-2006, 05:33 PM

Thank's Sharon - I hope Canadian's will start to post because it's hard to post about Disabilities, the different perscrips. the doctors use here, and the way the health care is dealt with, when posting in the ICN Forum. Please don't get me wrong - that Forum has kept me going and the people are wonderful there, and I can't say enough about Jill and all she has done for us all!!! What bother's me, is that there is absolutely no awareness about IC. I have talked to two women at different occasions that were picking up their perscriptions, and Elmiron was one of them. One lady was so happy when I asked her if she was being treated for IC, and we ended up talking for a long time. She was so schocked to hear someone else was suffering as she was. The other woman broke into tears when I asked her, (sounds like I hang around the drug counter all day, lol), and we ended up exchanging phone numbers. We spoke many times, but then she moved to another Province and we lost contact. It just bothers me that there are people out there that feel so alone, and I find that so sad, because I know how they feel from being there. So thanks for the encourageing words Sharon, and I to hope others will start posting. I know it's hard to post that first post, but once you do, and you get a response, it makes you want to post more & more.
Weezer

PlainJane

10-09-2006, 08:47 PM

Hi weezer,

I'm in Canada. I'm in Ontario far from BC! I love BC. I was actually in Vancouver last month seeing a doctor who specializes in Lyme disease.

To make a long story short -- my bladder symptoms started almost 3 years ago and I had no luck with overactive bladder medications and kept getting told there was "no infection". Anyway thanks to the internet I found out about an American nurse practitioner who specializes in IC treatments. Specifically she treats bacterial causes of IC. She herself was diagnosed with IC and found out (through broth culture) that she actually had many hard to treat bacterial infections in her bladder (She was treated with longterm antibiotics and is now well and has been for over 10 years). This nurse practitioner has found that regular docs and urologists are missing a lot of infections so she has her patients do broth cultures. I did a broth culture and found out I have enterococcus. I haven't gotten better with antibiotic treatment for the infection and the nurse thought maybe I'm not getting better because I might have chronic Lyme disease. Sure enough after doing specialized tests and seeing this Lyme specialist in Vancouver I have been diagnosed with Lyme. I have probably had it since I was 12 years old (I'm 26 now). Lyme can cause really bad bladder symptoms.

Anyway that is my story basically. I would love to discuss the Canadian Medical system with you sometime.

IC is bad enough but having IC and feeling like you're the only one who has it is even worse. Those poor women you talked to! It must have been a big relief to just talk to someone else with IC. Good for you for trying to revive the Canadian forum. :)

Erica

daisymuffin

10-21-2006, 10:29 PM

Hi there,

I just wanted to let you know, that I am from the lower mainland and I feel the same way that you do. I don't post very often as I feel sometimes the information isn't all too helpful do to that we are in Canada. I do know of a support group that meets once a month at Royal Columbian hospital if everything gets aranged properly. I am with you that we need someone to talk to you and it is hard to find someone who understands. I have IC, endometriosis and IBC and many other medical conditions that I suffer with everyday as well.

I do hope to talk to you soon and it would be nice to talk with someone that is close to home.

Hope to hear from you soon!!

Gayle2

10-24-2006, 09:05 AM

I am an Ontario resident who had surgery last November for a Bladder Prolapse. Since then I have had discomfort from time to time and thought it was an unsuccessful surgery or bladder infections. The last time I saw my doctor she suggested that I may have IC as I do not have a bladder infection according to the urine tests and she feels the surgery was successful.
The symtoms vary from voiding frequently to discomfort to burning bladder, etc. I am taking Elmiron and have been for 2 months - this has helped some but I have bad days as well.
I am feeling pretty disheartened after going for surgery to help with one discomfort to find I have another that is probably worse.
G.

katievarga

10-25-2006, 09:23 AM

Hi
I am from the lowermainland aswell. I have had bladder infection since i was 19 about 5 to 7 a year for 7 years. Anyway i finally got to see a urologist in july and I had a camera put into my bladder and my urethra( tube that you pee out of) stretched. Sorry I don't know all the real names for the operations. My Urologist has put me on Elmiron and I have been doing my best to take it 3 times a day but it is so hard. I am wodering if anyone has actually had sucess with this treatment. THis is killing my marraige, I never ever want to have sex cause it hurts so badly. I never had the pain with sex until after I had my daughter. My family DR said the elmiron can take up to 6 months to work. She won't give me anything to take for the pain so we can have sexso my husnband won't divorce me. But what I don't understand is this whole disease. I do get bladder infections and I just had one last week (the worst one in a long time) He gave me cipro and T3's. I am just wondering if anyone had any luck in the sex part of this disease. I feel horrible I know my husband won't ever leave me, but he doesn't understand why I dont' want to . we have tried ever position possible, but I can't even get into any part. I am so glad I found this website

katievarga

10-27-2006, 08:55 AM

Hi
I am just wondering if any of you got subscribed pain meds with IC. I went to my family doctor to discuss my newest bladder infection, and I asked her if she could give me anything to help ease the pain when my husband and i have sex, and she said no. Nothing will help with that sort of pain. I was just wondering if any one else had this, I noticed a lot of te women in the US get pain meds. Is canada more strict?

daisymuffin

10-27-2006, 09:22 PM

Hi katievarga,

So glad to hear from another person in the lower mainland, I am in Surrey. I have had IC and endometriosis since I was about 16 or so. I have had a hard time with sex all of my life but I guess you can say I have gotton use to it, and I have a very understanding husband. I have many many cystoscopies and hydrodistentions and have tried the elmiron as well as chronic pain medication. I am now only taking pyridium and my strong pain meds, as we are attempting to get pregnanct at this point. With the elmiron I didn't find it helped with pain at all just the frequency, it is hard with my pain thou cause if one problem flaires so does the other, so my doctors have a hard time trying to treat it. I do take thou for the pain hydromorphone (morphine) and I do also use b&o suppositories, which I do find work before and after sex to help with the pain and discomfort. But like I said now that I am not taking any of my regular pain medications and regulatory drugs I have major problems with pain. Before we starting trying to have children I took morphine pills 4 times a day, these are ones that keep the morphine in my syste, 24 7. My urologist is great and so is my family doctor, I do also see a chronic pain specialist as well.

:hi: :smile tee

Selena

11-01-2006, 12:42 PM

Hi KatieVarga
I am 27 and newly diagnosed with IC from my Gyno I am travelling to see a urologist for the second time in January and hopefully be put on Elmiron. I have a mild case last time I had a but flair was in Sept. I have mild symptoms regularly. I watch what I eat and more so since I found this website.
I have had what I thought were BI's for about five years. Sex usually painful for me. I take a pyridium and it usually eases the pain a ice pack right after and then a heating pad feels really good. I also have an anitbiotic my doctor perscribed me for after sex. My husband is really frustrated and so am I but it is really good to know that we are not alone.
Selena

wings22

11-04-2006, 01:28 PM

Hi my name is Tanya I'm in Canada to I'm from Cape Breton but live in Ontario as well thanks we all need to go talk with other people from Canada as well i know what you are talking about alot of the groups I'm in they are all from the USA not many in Canada so it is always nice to see Canada here...lol

weezer

11-04-2006, 02:31 PM

What I can't figure out is, there are not many people that post from B.C. or the lower mainland. I have only seen 3 others besides myself, and it seems all the others are in Ontario (no offense to Ontario)lol, . Cape Breton is soooo beautiful - I had the chance 4 years ago to visit there and the beauty is unbelievable. I find all the Maritines to be so friendly and when I was there (in Nova Scotia), I had the chance to contact a couple of support groups that I found while visiting. The people were so kind and friendly, and they really made you feel welcome. Can't seem to find that here in the lower mainland of B.C., and I just can't figure it out. No offense to anyone in the lower mainland or B.C.
Weezer

wings22

11-04-2006, 06:30 PM

Ya no offense taking Hun ya C.B. is beautiful i was home this summer i had a lot of pics of the ocean if you would like me to post them let me know and i will...

weezer

11-04-2006, 08:07 PM

I would absolutely love to see them. With the scenery & the history I find that side of Canada so interesting. My hubby & I were there (Nova Scotia) for 2 months visiting his brother and wife and " lots of family". My hubby is from Nova Scotia, and moved to B.C. when he was just a child. His brother & wife live in Bedford N.S. and it was quite the trip. I love the Pacific Ocean, but there is just something about the Atlantic Ocean that is so mystic (I think that's the word I'm looking for). So yes I would love to see your pic's if its not to much of a problem. Thank you...
Weezer

Imasurvivor

11-11-2006, 12:32 PM

I am from Vancouver and I have had IC for two years now. I think I have it under control finally. It takes time and lots of patience. What works for you may not work for others. There is a lot of trial by error. I also have kidney problems and have to have a special diet for that as well as my IC diet and sometimes they clash so I just had to figure out what worked for both. IC has only been recognized by medical professionals for about the last ten years and some of them still do not recognize it and others do not know that much about it. My Urologist specializes in it and stays on top of whats going on and whats new. That is really important when choosing a doctor. There was a conference about it at St Paul's Hospital about a year and a half ago. It was really interesting. That is where my urologist practices and he headed the conference. I take Elmiron and it works great for me. It takes awhile for the effects to work but it is worth the wait. As for the sex part I don't know much about that as I am separated and haven't had any in awhile. I have heard that there are some creams out there that help but I don't know what they are.

wings22

11-11-2006, 01:55 PM

Here you go!!

wings22

11-11-2006, 01:56 PM

Don't know why the pics are not working.....Grrrrr

penny1974

11-19-2006, 12:28 PM

I have suffered endometriosis since i was diganosed at 16 years old. Luckily iI got pregnant after surgery when i was 20 and 2 healthy boys. The 3 pregnancy I lost my baby half way through my pregnancy and ended up having 2 surguries and bad infection from the surgery and lost my fallopian tubes during the surguries. I was on IV for a month. I couldn't have anymore children. Then in 2001 iI had to have a hysctotomy from painful peroids, endometriosis and alot of bleeding. Then, in 2003 I kept getting bladder infections continuiesly and on anti-biotics constantly, finally I was admitted to hospital and they refered me to a Uroligist and order for me to have surgury again on the bladder, then that's how I found out that I had IC my family doctor told me and my family that the pain and the symptons were all in my head, but he was proven wrong. I went for several months of pain and bladder infections and 20 surgeries later, one including having my bladder have a sling put in. I have been on Elmiron for the past 3 years and no change and different pain meds and muscle relaxers, diet changes and still having reoccurences and bladder infections. My uroligist has no idea what to do next. I can't go back to work due to the stress and having to go to the bathroom all the time. Also, raising 2 boys aged 10 and 9 years old, on my own. I'm currently recieving disabilty for the IC and depression, anxiety and stress. I'm looking for any kind of help here in Ontario and doctors or meds to try for the pain and how to manage Ic better, I'm confined to my home afraid of having a an accident or people wondering why i use the bathroom constantly.

wings22

11-20-2006, 04:42 AM

Hi, Hun i'm sorry you are having a hard time right now i'm praying and thinging of you(((BIG HUGS)))...Here is a great book on IC i know it helpd me out and does not cost that much i hope it helps you......

penny1974

11-20-2006, 05:05 AM

:angel:
Thanks for little note, I'm glad someone understands what I'm going through. thanks for the website about the book. I'll make sure I get one. I appreciate in any help that I can get.
Penny1974

katievarga

11-24-2006, 10:54 AM

Hi everyone
I am having a rough time with my IC. I was diagnosed in august 06, too many bladder infections to even count. I can't wear jeans anymore, anyone else have that problem? I have Gr 1 (out of 4) so I guess that would be considered a mild case. It sure doesn't feel mild. I feel so sorry for those of you who have a worse grade then I do. Anyway, i went to my family doctor she is sending me to a gyno that deals with pelvic pain, and apparantly she is also a couples councellor. She also put me on elavil 10mg one tab at night then increase to 2 after 2 weeks, then 3 for 3 weeks, etc... till I am at 5 a night which is 50mg. that seems high after reading about it on the other boards, most women are only taking 25mg. I am wondering if anyone else is taking it, and what it is like. it is used for people with chronic pain, I also heard it makes you gain weight. I really don't want to do that. What does a flare up feel like. I seem to have constant uncomfortale feeling down there, like a UTI. especially when I sit for a long time. thank god i only work 3 days a week.

sandramac

11-27-2006, 08:15 AM

:smile tee Hi all! Im in Toronto & have had Been dio since 2002. It took me 2 years in ER & 4 uro to get dio ,I had to BEG the doctors here to do a hydro! Had it done they found a large hunners and sent me home with no pain meds! Im on the Elimiron & also just finished a drug trial for Ontario. It was for cystatiat .I will not know for some time if i was given the water or meds? My pain levels were off the chart. My Ic is definately hormone reliated, I hope you are all well !
Hugs Sandra:cat: :cat: :cat:

Imasurvivor

11-30-2006, 11:10 AM

Hi my name is Pat and I am also on Elmiron but I also take ceterizine which really helps with the burning. You can but it over the counter. It is found in reactine It is an antihistimine. I found it really works wonders. Also you chould try wearing cotton underwear as nylon doesn't breathe. I have never heard of it being hormone related. I went to conference for it and we were told it was a case of having no lining left in our bladder or the llining was damaged. In my case it was from so many Kidney surgeries. The lining is what causes the bladder to expand and contract when full or empty. When the lining is damaged it stays expanded so you always feel like you have to pee. The Elmiron fools the bladder into thinking there is a lining. The ceterizine helps with the burning. I have been on it for about 1 1/2 yrs and it is working for me but I know others who say it doesn't work. Ask your uro if you should try it.

siriuspsyclist

12-13-2006, 07:50 AM

hi! another one of the millions of IC sufferers here. my worst symptom is the constant urethritis (someone shoved a pinecone up there!) and the cramping and the nausea and the back pain ...ooo

I too have had lots of UTIs and I am now trying to get my life together. I think I'll send my GP to read this site before I see him next time! The urologist too! Let's all demand broth tests across the board and at least see if we all have some bacterial component. I visualize that one day this will be like ulcers and they will figure out that some esoteric bacteria is doing this (or at least contributing to it!) and we can all get better.

I am getting some moderate relief with the calcium citrate. Taking 700mg before food in the morning and then another 350-700 later in the day and the cramping eases enought that I can work for a few hours without too much agony. But boy do I know agony now. This IC challenges every single coping skill I've got. I find myself crying so much now. But luckily my sweetie is a saint and just keeps on hugging and loving me and hoping with me for better days. He's a rock.

DOes anyone here have a mirena IUD? My symptoms completely disappeared for the first year and a half with the progesterone stalk happiy dissolving away in my uterus and then a year ago the top of my bladder blew off (just a metaphor there folks, no real blowing!!) and now I have read that some IC starts with a reaction to synthetic progesterone? YIKES!
kt

Braedley

12-16-2006, 09:12 AM

Hi guys, I didn't see this place on ICN until today! I'm from Nova Scotia and this is all fairly new to me and my husband too - 7 years ago I was sent to a uro for frequent UTI's, he had no name for it but wanted to stretch my bladder and I'd be fixed...did not happen...the guy did not have a good track record (after speaking to a bunch of his patients, small town) - let it go, it wasn't bad, just frequent bladder infections and so on...

I went to our family dr in April/May this year when my situation became dire - sleeping only 20 mins/time, constant pain, pressure, frequency - thought I had a bladder infection, did everything - nothing helped...She suggested IC, put me on Ditropan XL and pyridium as need be...Then I found the IC diet through researching online (and now this forum!)...

However, I went to a uro here in May who said it probably is IC, 'we'll go in, do a cysto then a hydrodistention, you'll be fine the next day to go back to work, but it's quite painful healing, and takes 10-14 days to heal - you can take motrin or tylenol for the pain' - now he's saying none of that, i'll be 'healed' and my hesitation for unnecessary surgery is unwarranted...Reading different experiences on here however, has made me totally rethink this hydrodistention...

My family doctor is wonderful and I trust her judgement implicitly, however, this guy seems like a jerk...My hubby and I are against the cysto & hydro, but would consider just the cysto depending...we're hoping to find a naturopath here who can help us get off the Ditropan so we can conceive next year...I'm 99.9% positive it's IC (based on the track record and symptoms, diet modification helping, etc.), but it's fairly mild...I'm quite lucky I respond well to the Ditropan as I have...

Hope you guys might have some advice or experience I can hear about given you're in the same country as I am! (and possibly vice versa) - currently, my main concern is obtaining and OB/GYN who is well versed in IC who will take care of us when the time comes...
:cat:

sandramac

12-16-2006, 02:48 PM

Hi Girls, Cat I do have some advise as we are all diffrent & respond diffrently, For Doc"s It took me 4 uros and 2 years to get a dio. I had Hunners ulsers in my bladder by the time I was dio. I also had several years of fiterlity treatments before the Ic. A I & IVF , No luck,No Kids The fiterlity drugs & hormone treatments I feel have given me the IC. I Am one of the group of patients that flares severly during ovulation 7 to 10 days before my period! Im am In major pain ! Feels like someone is stabbing me in the bladder with a ice pick ! And horrible, pressure and throbbing. then to go and only pass a little dribble. Im on The Elimiron & hydroxyzine, i had the patch & Ditropan But found it caused me to retain. I ve also had 3 hydros, but did not find i got much relief from them. Most uro or Sp Will not do anything , I find until they put you through thier own tests and hydro, A cysto really does nothing as they can tell more by a hydro. I also agree it takes 2 weeks to recover. I hope you have some luck with finding a good Doc there. As for the natural approach, I did try it BUT It still a drug in a diffrent form that has been put through a process ,into a bottle or pill form, My Doc said it can be more dangerous as the levels can not be controlled. Use your own judgement & proceed with caution, This is just My advise, And my personal experience, Im not A Doctor , just a Ic patient giving you my personal experience. You do your reaserch and decide whats right for you.Have you gone into the patient handbook ? Theres amazing info there, In everything! I wish you the best of luck & health. Pm me if you ever need a IC friend, Or have a question, Or just a shoulder to rest your head on! Hugs Sandra

Curlyfries

12-16-2006, 04:02 PM

....just recently moved from Kelowna because we can't find a doctor or a place to live. My daughter and I are living in a motel and still looking for a home. I am suffering so bad with pain and no doctors available or taking new patients. Sometimes I end up in the ER and all they do is tell me I need to find a doc. Wicked circle of passing the buck here. I am so desperate for pain relief. I've been laying down for a year now. I am unable to function at all. If I do find a doc, don't know how I'd move to get there.:cussing:

Maria MK

08-21-2007, 05:26 AM

Tip and IBS

08-22-2007, 03:55 AM

The problem is this canadian forum is undersupervised.

The post shouldn't be "dump" every months to show that there is PEOPLE with PELVIC PAIN who come here.

The "old" post STILL in here but people need to click on "from the beginning" to get all the page which is irritating as many members don't know about it and dosen't bother to post on a empty forum.:mad:

DebbieB

08-22-2007, 04:32 AM

Tip and IBS The problem is this canadian forum is undersupervised.

Hello Tip and IBS :

The Canada chat is supervised and I am the moderator of this board..
I am not the one to delete the old messages that are still on the forum ..

:welcome: Maria to the Canada chat message board !!

Also try to Private message Erica about this matter ...

Debbie

Quinn24

08-22-2007, 07:05 AM

Hi Weezer,
I am in Vancouver.......where is Ocean Park....is that Surrey? All I know of is Ocean Park Ford on King George Highway!! HA!HA!HA! I have had 3 hydrodistentions but I thought they only did them at UBC Hospital now. I was scheduled for VGH and they cancelled me (last Dec.) and told me they are all done at UBC now. My Urologist is at UBC. I think a lot of Canadians don't use this site much because a lot of it doesn't relate to Canadians. I get even more depressed when I read the Americans posting about how they have to pay for everything and don't have insurance so have to work through their pain and cannot afford to go to the Emergency etc. It makes me sad....and greatful for Canadians not having to pay for any medical services, tests or operations.

Daisymuffin........I've never heard of a support group at RCH, do they meet regularly?

bladder

08-22-2007, 08:13 AM

Who do you see in Vancouver? I am in Fort St. John and have not had any luck with a urologist who trully understands IC. I have been going to Alberta. Not impressed. I would travel to Vancouver just to see someone that will listen to my symptoms and find the best way to treat my problems. I have all the symptoms of IC. I had a postive PST, but my in office cysto and UDS came out normal. I was told it was " just" overactive bladder. Oh yeh, what about the pain and discomfort, sensitivity to food/beverages and increased symptoms during my periods? My frequency issue has settled some but I am on Elmiron and Hydroxyzine. I still have to take Tylenol 3 to get through the tough days. I just want to be diagnosed. How frustrating....sorry about the vent. Just feel like I am treading water....

Tip and IBS

08-22-2007, 08:32 AM

Hi bladder :hi:

Lol

foofie

09-15-2007, 03:02 PM

Hey Curlyfries.... I tried the medical and the 'alternative' route for my IC and have had much more success with the'alternative' route. I know finding a doctor in the Okanagan is next to impossible!! I'm in Armstrong. I have found relief with the following: from my naturopath(find a fully qualified naturopathic doctor) ....IC Blend by Vitanica...a supplement that rebuilds the bladder wall, relieves pain and urgency and stops spasms. Works great. I was without it for a week and ended up right back in bed with ice packs. A medical doctor would prescribe Elmiron for this, but the IC Blend works way better for me. I also use a super green supplement to keep my ph balance. I've tested both my urine and saliva while on this and it keeps me balanced and is so good for you. I use Valium for stress, but it helps relieve the spasms too. You should be able to get this prescribed from a walk- in clinic. I am on Elavil...small doses help for chronic pain. 20 mg. in am and 20 at night. I take Tylenol 3 for bad pain days, but keep that to a minimum. Pyridium, the drug that doctors often prescribe for UTIs is pure acid, and although it may provide short term relief will actually irritate the bladder long term because of its high acid content. I also see a massage therapist (again fully registered) and she works on my pain trigger points. The result is amazing! Relief overnight...no kidding! Hope you find a wonderful home and a good doctor, but look for a good natorpath and massage therapist too. I know it all costs money, but your health is the most important thing, right? Hang in there...I'm here for you, okay? Foofie

foofie

09-15-2007, 03:09 PM

Hi. I had trouble finding this sight too. You sort of have to go through the whole site to get here. It should pop up from just typing in IC Canada, but that takes you to the US site and then you go from there. In other words, this site is too hard to find! Can you make it easier? I've been reading all these USA IC friends and just today found this. I also would like to know if there is any support group in the interior of Okanagan area of BC. People tend to forget that BC does not equal Vancouver and the Lower Mainland!!

loriw

09-15-2007, 07:11 PM

:hi: Hi....
LoriW from Medicine Hat, Alberta.(Am always on the lookout for someone who might live in same city as me!!)

DebbieB

09-17-2007, 02:02 AM

:welcome: foofie to the Canada Chat message board..

Here is a list of some support groups ...

Now I don't know how updated these support groups are but this may be of some help to you ..

Debbie

Alberta

IC phone support only
Edmonton - Sharon L. Montgomery, (780) 434-0027 - e-mail: Sharon Montgomery

British Columbia

NEW! (02/07) VANCOUVER IC Support Group
Contact Shirley Oliver - 604-224-4722
E-mail: shirley.oliver@shaw.ca
Please contact for Shirley for meeting schedule and location.

Prince George I.C. Support Group and Info.
Darleen O'Neill 250-962-7943, e-mail: doneill@sd57.bc.ca
Brenda Daly 250-964-0948
This group meets on the fourth Wednesday of every month except for July, August and December. Meetings are held in room 105 at the Prince George Regional Hospital at 7:00 pm.

Comox - IC phone support only
Shirley Apsouris, 1-250-339-1240

Nanaimo - Sandy McNicol: 250-758-3207 - e-mail: Sandy McNicol

Ontario

IC Support and Info. Group of Brantford
Helen Prince 519-752-2534
Please call for meeting information and IC phone support

IC phone support only
Cornwall - Francine Brisson 613-936-2016

IC Support and Info. Group of London
Carol Shaw 519-474-1680
Marilyn Cousins 519-438-1500
Marilyn's Email: spicegirl1500@rogers.com
2006 Meeting schedule:
Tuesday, February 28: 6:45 p.m. at the Fred Landon Branch of the London Public Library, 167 Wortley Road (Intersect Bruce St.), London. Come join us for a time to share experiences, listen to others, and to re-acquaint.
Tuesday, March 28: 6:45 p.m. at the Fred Landon Branch of the London Public Library, 167 Wortley Road (Intersect Bruce St.), London. Speaker to be announced.
Please call Carol or Marilyn above for additional meeting information and IC phone support.
Wednesday, May 17: 6:45 p.m. at the Landon Branch of the London Public Library. The address is 167 Wortley Road, London. The speaker is Mike Bethell of Bioniche who will present information on a new Cystistat study. For further info, contact Marilyn either by phone or email above.
Wednesday, October 17: 7:00 p.m. at the Landon Branch of the London Public Library. The address is 167 Wortley Road, London. The speaker will be announced soon. For further info, contact Marilyn either by phone or email above. Future meetings to be announced.

Updated! (01/06) IC Support and Info. Group of Ottawa
Inga Legere 613-839-6188, e-mail: ilegere2@hotmail.com
Anne Raina 613-733-5891
Support group meetings for those who have Interstitial Cystitis, and for anyone interested in learning about IC. We offer daytime and evening meetings. You are welcome to attend any meeting and do not need to be a member. Please join us to discuss your concerns, and to share helpful ideas about coping with this difficult disease. Please call for additional meeting information and IC phone support!

Our 2006 meetings dates are:
April 6 (Thursday), 1:00 p.m. at the City View United Church*
June 15 (Thursday), 7:00 p.m. at The Citizen Building**
September 5 (Tuesday), 7:00 p.m. at The Citizen Building**
November 9 (Thursday), 1:00 p.m. at the City View United Church*

*Daytime meetings will be held in the "Sunshine Room" at the City View United Church, 6 Epworth Ave. Follow Merivale Rd. south from Baseline Rd.; turn right onto Rossland (opposite Emerald Plaza - there's a gas station at that corner); proceed to Epworth which is on the left. You will see City View United Church. Go left into the parking lot and use the central door to the church. Parking is free.

**The Citizen Building is located at 1101 Baxter Road. From the Queensway, get off at the Pinecrest/Greenbank exit and head south (Greenbank). Just over the Queensway bridge turn left onto Iris. Proceed past the back of the Ikea Mall, and turn left onto Baxter. Free parking is available at the Citizen Building lot and adjacent roads. Use the main entrance door. The security guard will direct you to the meeting room.

IC Support and Info. Group of Toronto
Mary Andrisani 905-850-0589
Please call for meeting information and IC phone support

Janette Rass

09-25-2007, 05:37 PM

Hi there, :smile tee So sad that you have not been able to connect with any IC ers in the lower mainland. At one time there was a support group out of RCH, to be honest I'm not sure if it's operating right now. If you want more info contact me directly & I may be able to help as I was involved in starting the group at one point. The reality is IC people are sick & it's not easy to add anything to our schedules, & sad as it was the meeting often seemed to take last place. I have a good uro, supposed to be the best in town, quite frankly I not sure whether I'd say that, but the options are limited. He is supposed to be the most up to date & he does installations & few in town do, so.... I have made a great IC friend & both she & I are available to give support or info particular to the lower mainland I have some names/e-mails of others in the area with permision I'm sure I can share, just send me a private message. Great Big Hugs Janette

DebbieB

09-26-2007, 12:07 AM

:welcome: Janette to the Canada Chat message board..

Thanks for sharing your information about your support group ..
I as well know many people from the BC area with IC through out the years there has been a lot come and go on the boards ..

All the best at getting your IC support group up and going..

Debbie

Judy M

09-26-2007, 11:07 AM

Good Day fellow Canadian I.C. Sufferers :)

I, too, had a hard time finding this site, but now that I have, I will put it in "my favorites" and keep reading and posting.

This nasty disease that we all have in common is certainly no picnic and it can be down-right hard to deal with at times. I've had it for 2 1/2 years and still counting GRRRRR!!! But I have found ways to deal with it.
At first I tried Rimso for a year and a 1/2, it worked for that particular day, but I needed to come straight home after and have a hot bath because my urethera would sting like a dikkins' from the catheter ??, and a child's size one at that. In the meantime I read a lot about I.C. and one website "Even Better Now.com" offers solutions and hope for dealing with "flare ups" and living with this monkey on my back. :help: Please check this out for yourselves, I'm sure you will find some help from it. I have discovered Prelief here in Canada. At one time you could not find it here, but now it is available to us. For those of you who don't know what Prelief is, it's a safe acid reducing tablet that takes the acids out of food safely, helping to prevent any flareups. It is my friend. :smile tee You can find it at "Pure Nature Nutrition Centers" located in LaSalle, Ontario. Phone number: (519) 972-8696. The 300 tablet bottles are $39.99 each + shipping, but if you buy 3 bottle for $119.97 the shipping is free (for anything over $100.00). I use my mastercard for my purchases, which they do right over the phone, and I have had no problems with getting ripped-off or not receiving my meds. I have been ordering them since last summer. I'm sure they take money-orders too. I am able to enjoy most foods in moderation and I have 1 large cup of coffee every morning by dissolving 4 preleif tablets into it before adding cream or milk, (while the liquid is still hot!!) Without suffering a "flareup". I also add 12 drops of Grapefruit Seed Extract to it as well. The Grapefruit Seed Extract increased the alkaline in your body, while the Prelief decreases the acid in the coffee. You can find out about the Grapefruit Seed Extract on the "Even Better Now" website. I take colostrum and use baking soda if I'm having a "flareup". Both of those applications and information are on the "Even Better Now" website too. I haven't given up hope and I never will. I know that one day things will look up for all of us. The one thing though that bothers me the most, is the drugs you read about or hear about are usually from the US Site and they are not available to us here. :cussing: That I find discouraging, but not for long.
Here's to wishing Good luck to everybody in our attempts to find relief and a cure!!! :wink:

DebbieB

09-26-2007, 03:16 PM

:welcome: Judy to the Canada IC Chat..

Thanks for the information that you have posted ..

I am glad you found something that has help you with your IC .

Debbie

Judy M

09-27-2007, 02:31 AM

Thanks Debbie!!!

marsi4

09-27-2007, 04:20 PM

Hi Judy,

I live in Montreal, Canada, and I have been able to try all the meds that are available in the U.S. here in Canada through my Uro. What meds have you not been able to try or bladder instillations? As far as natural products go you can find them in a health store or order them on the internet. I haven't been able to find a support group in Montreal or a uro that knows much about ic or understands how disabling it is. I'd like to say hello to all Canadian IC suferrers. I pray that we can find some peace from this affliction one day soon.

Marsi4

Judy M

09-28-2007, 04:07 AM

Hi Marsi4,

Thanks for the info. The only bladder installation I've had done is Rimso. The reason I mistakenly said a lot of these meds weren't available to Canadians-I'll just remove my size 12 workboot out of my mouth now - is that my uro told me that a lot of the meds were not available. When I asked about elmiron he told me it wasn't necessary or available. I guess I just assumed.
Boy is my face red!!
Judy

foofie

10-01-2007, 06:40 AM

Hi Judy M....I was diagnosed with IC in April 07 and have found that I've learned how to 'keep it in check'. Low aced diet is really, really important for me. I have tried to find out where to get Prelief in Canada, so your info helps a lot. I too have found that Grapefruit seed extract (Citricidal) is making a BIG difference for me. I read that study connected to the IC site re IC being caused from an infection. I persuaded my doc. to order a 'broth culture' as mentioned in that research and he did so last week. He didn't even know what it was, and neither did the hospital lab....so we'll see how that goes. The lad asked me to print out and bring with me the info that I had found on this. Amazing. My doc said if the results come back with no answers, he'll forward my urine sample to Toronto for them to test. I really believe that this is infection related. I'll keep you posted as to what I find out. I've found the natural route better for me rather than a lot of meds, but am taking Elmiron (don't know if this is helping) I use Valium (1/2 tab in am and 1 in pm) and Ty. 3 for pain. But diet and the grapefruit seed has helped the most so far. Oh yeah, I take a super green supplement 3 tabs every meal too. This keeps my urine completely ph balananced always!! Good luck.