Canadian Chat

[Quinn24]

Another reason why some people may not use this chat is that when they post, a lot of the time they get no replies or reponses. I have posted a few times on the regular posts and never get my questions replied to. (I had a different screen name). Once I asked about the Frozen Aloe Vera and got maybe two replies and others I see who post on the same subject will get 50 replies. I like the boards but they seem really clicky, it seems the same people chat back and forth with each other. I posted some questions on the Candian chat forum a few days ago and no one has responded. It's like saying "Hi" to someone for 2 months and they don't reply, eventually you just give up and don't bother trying to communicate any longer. Just my humble opinion about why some people may loose interest in the regular or Canadian chat rooms?? But what do I know. Please don't anyone give me a lashing for saying this, I don't mean any disrespect to anyone, it's just my own observation and experience.

[DebbieB]

Hello Quinn24;
Another reason why some people may not use this chat is that when they post, a lot of the time they get no replies or reponses.

I have try to reply to many on this message board, it is just hard when I do not know any thing about what you may be posting and the question that you asked " Once I asked about the Frozen Aloe Vera "

As for having this Canada chat message board it is good for newcomer that come on the board and I don't know if you were aware that we did not have our own "Canada IC message board for over two and half years and it was the same only a few people posted on it and we did not have a lot of support either on the message board and that is why it is no longer up and running at this time..
I was the administrator for this board and that is why Jill asked me to look about this Canada Chat board ..

I am in contact with many Canadian with IC and find that there is not much support for IC and that is why Jill try to help us with our own Canada IC message board but I find that no one wanted to take the interest in supporting the board by funding it to keep it going so Jill had no other choice of closing it ..

I am only one person that is trying to be here for support and giving the best that I can to answer to some of the questions but if I do not know much about it ..I do give them the web site for the patient hand book on the IC-network to read and that is where you will get lots of great information from ..


Debbie

[Quinn24]

Hi Debbie,
The Quote you put on your reply actually isn't specific to Canada Chat......My Aloe Vera Question was asked on the regular chat forum. No one answers in Canada because there are not enough people that regularly check with the Canadian Forum so everyone tends to use the regular one. The question I had on the Canadian Forum was in response to someone saying there was an IC support group at RCH and I was asking if I could get some information on that but that person never replied.

[DebbieB]

Hi Quinn:

No one answers in Canada because there are not enough people that regularly check with the Canadian Forum so everyone tends to use the regular one.

I am sorry but I am totally confused on what Canadian Forum you are taking about??? :hmm:

[Quinn24]

Hi Debbie,
Sorry I don't use the proper terminology as I have no idea what these chat line, forums are called. Wherever I am typing to now is what I called the Canadian Forum.......the Canada Chat portion of the ICN Network. Sorry for confusing you. I never know what these things are called. Anyways, it doesn't matter so don't worry about it, it's not an important subject.

[foofie]

Hi Quin 24. I sent a note to Maria, who is the coordinator for the Canada site. I told her that I only found this Canadian site today after being on the US site for quite a while. This site is hard to find. It should pop up by just typing in IC Canada, but that sends you to the US first and then you have to find the Canadian link. I'm quite computer literate and still found it difficult to get here. Please feel free to chat with me here. I'll try to answer you...that is if I can find my way back here again!! Good Luck and don't give up. Foofie

[foofie]

You sound discouraged and like you don't think you really matter to anyone. Well you do matter. I care. Foofie

[foofie]

I was so thrilled to find this Canadian IC site. I did find it hard to find though. When I typed in IC Canada, I ended up in the US site and then had to find my way to this Canadian site. Should be a more direct route, I think. Okay, this is my story. I was finally diagnosed with IC during a bladder lift surgery ( my 2nd one) at Vancouver General Hospital in April 07. I'm sure I've had IC for years and have not been diagnosed til now. Dr. Wilke, who is an eminent uro/gyn doctor there just told my family doctor that I should 'perhaps by on Elmiron" My family doctor retired soon after that, so I was left in a bit of a predicament, and a lot of pain. As we all know, here in Canada especially in BC, finding a family doctor is next to impossible. I have now finally found one, thank God. He has me on Elavil (for chronic pain...small doses 20 mg. in am and again in pm) Valium (1/2 tab in am and 1 tab in pm...Valium is not only helpful for stress , but also helps to control spasms) Elmiron (this is not helping much at all, but maybe I need to be on it longer) and Ty.3 for bad pain flare ups. I see a fully qualified naturopathic doctor who has me on a supplement called IC Blend by Vitanica. This has really, really worked. I ran out of it for a week and ended up flat in bed with ice packs again. Back on it and I was better in just days. She also suggested super greens supplements to keep my urine ph balanced. This works! I tested both my saliva and urine with ph strips. No question. It works and super greens are good for you. She also has me on an adrenal gland supplement...this may only pertain to me. I was very run down because of all the pain etc. Something that has really helped me is that I see a fully registered massage therapist weekly. She works on my pain trigger points and the pain relief is like overnight! I am getting better slowly, but surely. I strongly suggest that we all need to find what works for us. Anything invasive, such as infusions etc, just make me worse. Strong drugs don't really help and I was on morphine, but stopped because it is so addictive. Many doctors prescribe pyridium, but although this may help short term for pain, it is pure acid ( I know, I tested it) and could harm your bladder wall even more long term. I've tried so much, that I likely forgot something here, but am more that willing to help whoever however I can! Stay strong...and fight back. Don't let IC win! With a caring heart ( and a very faulty bladder) Foofie

[barb 1]

Hi there,

I have been using the States board and got responses but have never received anything back fro the Canadian site.

Hope to hear and see more people posting.

Barb 1:welcome::angel:

[barb 1]

Hi Foofie,

Good to read your message.

Hope we can see more posts from Canada.

I got a lot of help from the site in the States and even got info. that I could not get here.

Hope to hear from you all soon.

Barb 1:welcome:

[barb 1]

Hi Debbie, Foofie, Quin and anyone else on the Canadian site.

I usually just type in Canadian Forum on the search bar of the American site and it goes thru very quickly to the Canadian site.

I have not written here for a while as I have been having some "new" adventures with healthcare!

The Aids to Daily living people came out to assess me for bathroom aids and what a nightmare this was.

They brought out a bath tub rail to help me get in and out of the bath, it would not fit my tub with the drainholes going into the tub so the guy screwed it onto my bath tub ackwards with the drainholes onto the floor and he said "there you go, now it fits"! :loco:

We wanted him to take it off and take it away but he "galloped off" to his van with the box before we could even unsrew the thing!

The apartment I have has stone tiles on the floor and any water on them is asking for trouble. My bathroom is so small that I would either end up in the toilet bowl or the cat litter box!

Before trying to fit the bath rail he put a bath seat in the tub and said "try this"! I am only about four feet ten and a half inches tall and to reah this seat I would need legs at least 3" longer. I managed to sit on the very edge and the foam rubber seat cover shot up and hit me on the bum followed by the seat!

He had also tried to fit a round raised toilet seat into my elongated toilet that rocked like a playground toy when you touched it!

Needless to say I did not try sitting on this! :hmm:

I telephoned homecare and told them that I did not have time to deal with this and they would have to wait until after I came back from seeing Dr. Hassouna.

I flew down on Friday, we watched the news of the Quantas plane with its side torn out on the aircraft news channel, not a good idea.

Then on Saturday I had to get my daughter to rush me to the dollar store where I stocked up on "cheap" pads as I don't use this kind of thing anymore and neither does she.

I have my device for retention but on Friday it seemed to be working o.k. and then on Saturday I (it takes my delinquent knees a long time to get me off the bed) had this horrible urge to pee, thankfully made it to standing (thank goodness for wooden floors) and my bladder just let go and I peeded all over the floor! :tsk:

My daughter said: "oh Mom, It is enough with the babies (one kid is 17, the others are two and a half and one)!, what happened!

I don't know what has happened and feel that my Wednesday appointment cannot come fast enough. Just hope I don't pee on Dr. Hassouna's floor! :tsk: That will make it easier to explain!

It does not matter what kind of pads I get, got some cheap ones for incontinence from Walmart but there is no worse feeling than knowing that your legs won't get you to the bathroom and crossing the legs is going to land you on the floor, so I just have to stand there with the same expression as my grandson and pee in my pants!

On Saturday I felt an urge but did not want to go, then the floodgates opened without feeling and that was it!

I have absolutely no feeling that I need to go, just feel the trickle when it starts! There is no fullness or real sensation, but the embarrasment is something else!

Who knows what it is with me !

I turned the device off for the day and then back on but that made no difference either. I know I have an infection, burning when I pee again but have just finnished two lots of antibiotics including cipro. Maybe I need to try them for a three month stretch again.

I will promise that every time I go on the States site I will send a note to our Canadian site. We need to make each oher laugh, even when it it really isn't funny, laughter is the best healer.

I did get so much imformation and help and thru them I found the Canadian site.

Like having visions of throwing the bath support at the guy fleeing with the empty box from my apartment! :biglaugh:

The joys of being poor (off work on short term disability now 34 weeks) which qualifies me for Aids to Daily Living in Alberta) but if this means having equipment that is absolutely no good for the purpose they are bing issues for then I would rather go without.

My neighbour and I got a bath stool that works for $2 and a grab bar for $3 (after this guy had gone) at the Salvation Army thrift shop so maybe I can keep searching and find more stuff.

Like you, Debbie, I will have to count my pennies! :pray:

When all else fails, laugh, watch a funny movie and really laugh at ourselves.

Normal people just don't understand how I can laugh at some of the things that have and are happening, they think it is terrible and that I should be very angry. They have no idea what we are going thru and we do not wish it on them.

Laughter makes me feel good and it really upsets the "enemy" if you laugh and smile!

Keeping our faith strong and praying a lot really helps. Being thankful and keeping a running record in our minds of all the reasons we have to be thankful for and that things could be a whole lot worse.

Debbie, I do hope you are feeling so much better. Let me know how it goes with you.

Hope you are all doing well and I promise to write the Canandian forum every week.

At the moment I need all the help I can get, so many wonderful people will help when you have a walker and a cane, suitcase and carry-on at the airports!

I am more trouble with the cane than without it, but they tell me that practice makes perfect! I try to remind myself of this when I am trying to come down my daughters twisty staircase with it!

Or better yet the one year old thinks it is a great toy!:grouphug:

Just when I think cross your legs and wait out the moment I just laugh so hard (that empties the bladders faster) I then proceed to fall over the cane!

There is no helping some people!

Talk to you guys again soon.

Barb 1

[Mothergoose]

Sorry to hear you are having so much trouble. Maybe try depends for awhile.

[barb 1]

Hi Mothergoose,

Thank you so much for the suggestion. Have you ever had this problem or know any one that did?

It is so embarrasing but I have to laugh.

:angel: :pray: :hi:

Thank you so much.

Barb 1

[Mothergoose]

No sorry i don't know anybody with these sorts of problems, but you need some help. It does baffle me as to what is happening to you.

Is the thing you turn on and off an insterm (sp), and did you say that it was for retention? And where did you get it. I have IC, IBS, PFD, neurogenic bladder, and severe retention. I am waiting to see a new uro about the retention end of Aug.

People don't understand what we go through. Did you post your problems where more people will see it and maybe have some suggestions, like maybe in the in the section severe IC

Let me know how you do or what you find out.

[barb 1]

Hi Mothergoose, every one,

The visit today went quite well. Dr. H. told me that the problems with the legs can happen and to see a nuerologist.

The swollen bladder and eurethra{?} he told me to see my gyne. for! Not sure about that!

I told him about all of this "surge" and he thinks it is because of the bladder infection. I told him that I had just finnished two sets of antibiotics and they had not worked. He gave me a new persription and said he would wait for the tests to come back.

I have to go back to his office next week befor I fly back as the surgery report is not my information and I would like to get this corrected before I take it home. In the meantime I will fax it to the Minister's assistant tomorrow to see just why medical disasters happen.

It was not Dr. H. that wrote it but yo would think someone would proof read them befor they get into the system.

Then I gave him the wrog form for Revenue Canada for the dissability tax credit so I have to go back and get another one completed! I thought I was being so careful!

It is the Medtronic interstim and it worked so well until the diathermy.

I just don't understand why I am having this non stop bladder infection.

I noticed Dr. H. had IC imformation on his desk. He is a wonderful doctor so you might want to talk to him.

I will write more tomorrow as my daughter wants to go to bed and I am on her computer.

Thank you so much for all of your support and I will write again tomorrow.

Barb 1

:pray: :angel:

[angie1962]

I'm like a few others here...just found the canadian IC site by fluke...didn't even know there was one...just like someone else, I thought I was going to a canadian site...nice to see you ladies

[barb 1]

Hi Angie,

Welcome to the Canadian site.

Sorry I took so long to reply.

This is just a quick note and I will send you a message tomorrow.

Had rather a lot to deal with after surgery and follow up.

Barb 1

:hi: :welcome::cat:

[Christian]

Hi There

I am a Canadian IC'er (not sure if that's a word but you get what I mean). Anyway, I am from Oshawa, Ontario and I wondered if there are any support groups out this way?:hi:

[bladder]

:welcome: I am Canadian IC patient as well. I am in British Columbia. It would be nice to know how many of us are in each province.

[MaryMcE]

Hi fellow Canadians!

I'm Mary, from Southwestern Ontario. I live in a pretty small town, but I am not too far from London and Windsor. If any of you are from this area please let me know!

Would anyone know of any IC Doctors in my area? I can't really go much east of Toronto - Toronto is about 3 hours away for me but I"d be willing to go that far for a good doc!

Thanks all!

Mary

[bluetou]

I am in nova scotia...:hi:
I also wanted to mention anyone in the Ottawa area, there is an incredible PHYSIO THERAPIST who deals with WOMEN and pelvic floor dysfunction, and IC. SHE IS INCREDIBLE!!
IF you go to her, I swear you will get relief!! if interested let me know, and I will give you her info.

:pray:

[Jennilyn]

I'm in Nova Scotia too! Not diagnosed yet, but it seems like I have a mild version of IC. It's been mentioned a few times over the past 3 years, so it really doesn't surprise me.

[feelsalone]

Hi fellow Canadians!

I'm Mary, from Southwestern Ontario. I live in a pretty small town, but I am not too far from London and Windsor. If any of you are from this area please let me know!

Would anyone know of any IC Doctors in my area? I can't really go much east of Toronto - Toronto is about 3 hours away for me but I"d be willing to go that far for a good doc!

Thanks all!

Mary
I am in London. I'm here for you if you want to chat.

[MaryMcE]

Hi Feelsalone.

You are NOT alone! I am really close by (Chatham).

I read your post about your co-worker observing your trouble. I am so sorry you are going thru this. Are you happy with your uro? I have seen one here, and he seemed pretty good, but I thought I would go to London if I need another opinion. I'm still really new at all of this.

PM me anytime if you want to chat.

mary

[feelsalone]

I have been receiving newsletters from this site for years but only just signed on to the forums tonight (the computer I had before wasn't powerful enough for me to sign on before).

I found a support group here in my city and they were very helpful with reading material. Unfortunately, I have never been able to attend one of their meetings because they tell me about them the day before. This doesn't give me enough time to arrange transportation. I also found it difficult to connect with the group even on-line.

I'm hoping to have better luck here.

I think that this is an awful, terrible disease and that we all need to support each other. Maybe I wouldn't have been having such a hard time if I had people to talk to who understood.

Let's all support each other and maybe we can kick this thing where it will do the most good!!!!! :bonk:

[Mothergoose]

I haven't been on much lately, I have been busy with back to school stuff, and then I went away right away, I should be home next week, I ussally get on line once a day, so I am around to chat with too. I live in BC.

[Poppystock]

Hi!

I am newly diagnosed in Toronto. Anyone know if we have a support group?

Best,
Emily

[curlycue]

when is our next chat in California

[feelsalone]

Here I am, back again. I haven't been on here since November. Needed time to sort some things out.

I am back to work and have lasted much longer than I would have suspected. Other than to go to work, I am not really getting out. This lovely thing called IC has turned me into an agoraphobic! Has anyone else gone through this?

I currently spend alot of time trying to get out in public & feel comfortable out in public. It is NOT easy! On the occasions when I do manage to get out, I spend most of my time in the bathrooms. Going back and forth from one to another.

I sometimes wonder how I got here?! When all this started and for a few years after, I could go out, I just needed to be able to have access to a bathroom. Then, one day, when I had a dr's appt, I cracked! As soon as I got in the car, I knew I couldn't get to the appt. I called and cancelled my appt.

I rebooked for a couple of weeks later and ran into the same problem. This time though, I was so afraid to try and get to my dr's office, that I broke down and cried. I called my dr's office and talked to her receptionist. Luckily, I knew her and she was very kind. I explained the problem and she said that the dr couldn't help me unless I could get there to see her. All I could do was promise to try.

I got back in the car and told the person that was taking me to the dr's to just drive and don't stop, no matter what. I laid down in the backseat and hid my eyes, so that I couldn't see how far away I was from a bathroom. Somehow, by some miracle, I got there. My dr put me on anxiety meds, one to take daily and another to take whenever I had to go anywhere - to keep me calm. Just getting there made me feel so much better. And the meds seemed to help. (She said that she was surprised that it hadn't affected me sooner.)

Now, however, I can get back and forth to the dr without too much difficulty and back and forth to work (it is very close to where I live), but I'm still afraid to go out.

I'm really struggling with this. My meds have the IC under some control. Now my biggest problem, is the fear. I'm no longer on the anxiety meds - I'm not petrified like I was, but I'm still struggling with trying to get my life back.

It is so hard without having any real support. I am single and on my own. I do have one sister that has been a lifesafter and I will forever be grateful to her for just letting me talk and encouraging me when she thinks I need it.

I only wish now that I had someone who could understand what I'm going through. Someone that I could confide in - who would understand.

Wow! I can't believe I have just written all this. I haven't really talked about it.

I hope everyone out there with these problems know that I'm here to chat (or just listen) and that I pray for us all.

[Uzes]

Hi Kat
Fantastic that you have gotten out and gone back to work. You should be really be proud of yourself. I am wondering why you have gone off your anxiety meds. Did I understand that properly? You must be really stressed by re entering the world and it seems to me this would be an essential time to take them. I hate medications but do think that some have their place. If you are going to gradually get back to some kind of "normal" (whatever that may be for you) then relieving some anxiety will help.
I understand, I think, what you mean about the agoraphobia. When I went back to my job after having been a "shut in" for 3 months I had a huge panic attack and was totally paranoid for an entire day. I became rooted on the spot and was sure that everyone was talking about me. It is one of the worst experiences I have ever had.
As well it is difficult making conversation when your entire focus has been on you and your illness (understandably) How are you sleeping? If you are not getting much sleep then, as you know, you get run down and end up stressed for little reason as well. The amatriptilyn will help with that as well.
I hope that you continue to share your story with the rest of us.
I do check this board every couple of days.
I am back to being a "shut in" and have not been diagnosed.After my return to work (at that time I had had pneumonia and shingles) I became increasing ill again from an undiagnosed illness. I had to put off my cysto./hyper. because I had a bad bladder infection. It is rescheduled for Oct.1st. Meanwhile I and my dogs are being cared for by a wonderful group of friends as I can no longer do many of the daily things for us. I know that there is probably something else medically going on as well but will get a diagnosis on this one way or the other first.
Remember, you should be super proud of yourself!

[feelsalone]

Thank you so much for your kind words. Sometimes, I find it very hard to accept that I have done some things and accomplished some things on the road to getting back to 'normal'. You sound alot like my sister, who has been a complete Godsend to me. She is always telling me how much I have accomplished and how proud she is of me.

You did understand correctly. I did stop taking my anxiety meds. I started taking them because I got to the point that I was absolutely petrified to go outside. I am no longer petrified but still stressed about it. I decided to get off the meds because I could go out without them and I didn't want to rely on them. I am already taking way too many pills.

I do find all of this hard and mentally exhausting. I have missed out on so many things in life - things that I can never participate in now that they're done. That has been one of the hardest things for me to accept - and I still don't. Sometimes, because of the IC and it causing the agoraphobia, I feel as though I am being punished for something beyond my control. Due to all the medical problems & going on debt, I've had to go on disability (for over 2yrs!) and this caused financial problems as well. I used to have an excellent credit rating and could get anything, now, my credit is in the toilet and I can get nothing from any company.

I sometimes (stupidly) ask, 'why me?' And then I have to kick myself and say, 'why not me?' I deserve all of this no more and no less than anyone else with this.

Anyway, enough about me.

It sounds like you have had much support. You are very lucky! I haven't had alot. I am part of a large family. But I am single and on my own. The only one that has really been there for me since the beginning is my one sister. Make sure that you let everyone know how much you have appreciated all their help and support. I tell my sister as often as I can.

If you ever need someone to talk to or just want to scream, send me a private message.

Take care of yourself (I wish you well!) and hope to hear from you again!
***********************************************
Hi Kat
Fantastic that you have gotten out and gone back to work. You should be really be proud of yourself. I am wondering why you have gone off your anxiety meds. Did I understand that properly? You must be really stressed by re entering the world and it seems to me this would be an essential time to take them. I hate medications but do think that some have their place. If you are going to gradually get back to some kind of "normal" (whatever that may be for you) then relieving some anxiety will help.
I understand, I think, what you mean about the agoraphobia. When I went back to my job after having been a "shut in" for 3 months I had a huge panic attack and was totally paranoid for an entire day. I became rooted on the spot and was sure that everyone was talking about me. It is one of the worst experiences I have ever had.
As well it is difficult making conversation when your entire focus has been on you and your illness (understandably) How are you sleeping? If you are not getting much sleep then, as you know, you get run down and end up stressed for little reason as well. The amatriptilyn will help with that as well.
I hope that you continue to share your story with the rest of us.
I do check this board every couple of days.
I am back to being a "shut in" and have not been diagnosed.After my return to work (at that time I had had pneumonia and shingles) I became increasing ill again from an undiagnosed illness. I had to put off my cysto./hyper. because I had a bad bladder infection. It is rescheduled for Oct.1st. Meanwhile I and my dogs are being cared for by a wonderful group of friends as I can no longer do many of the daily things for us. I know that there is probably something else medically going on as well but will get a diagnosis on this one way or the other first.
Remember, you should be super proud of yourself!

[feelsalone]

Thank you for your kind words.

I appreciate that you think I should feel pride for my accomplishments, but I think pride went out the window when this nasty disease invaded my life.

Sometimes, if I think back to where I was last year at this time, I think I have come a long way. But then, I remember all the things I still can't do (& wonder if I ever will be able to again). There are so many simple things that are just out of my reach right now. Simple things, like going to a work christmas party or going out to lunch with co-workers (going to a movie or play or concert). Just thinking about attempting these things gets my heart pounding so hard, that I have to do something to take my mind off of them before it bursts out of my chest!

I have done some things since I last signed on - but I still have so far to go. It's hard to believe that there was a time when I didn't have to think about whether I could go out or not - if I had something to do or somewhere to go, I just went. I find it very hard/impossible to believe that I will ever be that carefree again. I try to tell myself that I am dealing with all this medical stuff now, but that I will be the healthiest/happiest senior in the world (when I get to that age)! Haven't quite convinced myself of this yet. I keep trying though but IC/agoraphobia seems to keep getting in the way.

No one told me life was going to be this hard. Sometimes I think that when we are born, we should have a warning label 'your life will drastically change in your thirties' so that you know to go out and have fun and make the most of things, before all the chances are gone.

I guess I am finding this so hard, because I am all on my own. No one to be with when I'm at home. No one to give me a hug at the end of the day and say 'don't worry, it will be ok. We'll get through this together'.

My only true friends now, are on-line. Most of (what I thought were) my real friends, have disappeared.

I hope that everyone who reads this, who has someone there for them, counts their blessings daily! You can't imagine what this is like all alone (& I hope you never can)!

I will pray for all of us, because I think that we all need more strength than we have on our own.

Take care.

I hope that things have improved since your post and that things continue to get better for you!

*************************
Hi Kat
Fantastic that you have gotten out and gone back to work. You should be really be proud of yourself. I am wondering why you have gone off your anxiety meds. Did I understand that properly? You must be really stressed by re entering the world and it seems to me this would be an essential time to take them. I hate medications but do think that some have their place. If you are going to gradually get back to some kind of "normal" (whatever that may be for you) then relieving some anxiety will help.
I understand, I think, what you mean about the agoraphobia. When I went back to my job after having been a "shut in" for 3 months I had a huge panic attack and was totally paranoid for an entire day. I became rooted on the spot and was sure that everyone was talking about me. It is one of the worst experiences I have ever had.
As well it is difficult making conversation when your entire focus has been on you and your illness (understandably) How are you sleeping? If you are not getting much sleep then, as you know, you get run down and end up stressed for little reason as well. The amatriptilyn will help with that as well.
I hope that you continue to share your story with the rest of us.
I do check this board every couple of days.
I am back to being a "shut in" and have not been diagnosed.After my return to work (at that time I had had pneumonia and shingles) I became increasing ill again from an undiagnosed illness. I had to put off my cysto./hyper. because I had a bad bladder infection. It is rescheduled for Oct.1st. Meanwhile I and my dogs are being cared for by a wonderful group of friends as I can no longer do many of the daily things for us. I know that there is probably something else medically going on as well but will get a diagnosis on this one way or the other first.
Remember, you should be super proud of yourself!

[jackydp]

Hi fellow Canadians,
I'm new here. Just joined yesterday. I haven't "officially" been diagnosed with IC yet, but I'm pretty sure that's what I have. I had a bladder infection about two months ago which wasn't diagnosed for a while - I think the doctor was sitting on the results for a while. So it was about 10 days after my initial urine sample that I was told that I had an infection, and who knows how long I had had it before. I was put on Ciprofloxacillin for 6 days. It seemed to help, but about a week after I finished the antibiotic I felt like the symptoms were back again. I went back to the doctor and the dipstick was negative. I was very surprised as I had all the symptoms off a UTI. So went home and drank lots of organic cranberry juice (which is probably one of the worst things you can do for IC after reading some things on this site). So back to the doctor I went again the other day. Again a negative dipstick. I have also had a lot of discomfort in my abdomen, bloating, peeing every 15 minutes or so some days, and very sore "down below" in the vaginal opening. So I have to go for an ultrasound next week and then may be sent to a urologist. The doctor suspects IC. He said one of the treatments is very high dose antibiotics for 3 months, which makes no sense to me if it's not due to a bacterial infection.
Would love to know if anyone lives in the Calgary area, and even if you don't what has helped you. I am quite scared about living like this for the rest of my life. Getting quite depressed. I also have irritable bowel and Hashimoto's. I went through surgical menopause 4 years ago at age 49 when I had prophylactic surgery when I discovered I carry the BRCA2 gene mutation (also had a double mastectomy). I've been using bioidentical hormone creams for two years and Vagifem suppositories (when I remember) - think I must use them regularly.
Does anyone know a good urologist in Calgary?
Thanks,

Jacky

[carole]

Just wanted to say to all you Canucks!

:smile tee

[lalarainbow]

Hi from NS... My son is in Hamilton Ont.
I just got over a bladder infection.. probably had it longer then I thought but I kept thinking it was the IC

I recently got Prelief from a place in Windsor Ont. ordered on line
They mailed it to me .. I got 3 bottles of 300 capsules and did not have to pay for the shipping. Very quick in getting it here..
I have used it before and got good results but have not been to the States in the last few years.

I have IBS and am on meds for high blood pressure and cholesterol.
I do take Detrol LA occasionally but they constipate me.
Been on and Anti depressant for 20 some years . small dose
I had a hysterectomy but kept ovaries- I now have menopausal things like hot flashes, not sleeping well etc. aches and pains lol

Hope you can find something that helps you. It sure is not easy getting things sorted out

Have a great day.

[bluetou]

HI Jacky WELCOME!! Try not to get too depressed and stressed, (so easy to say....)....but stress is a huge trigger for IC and can actually cause you more pain an discomfort.

If I were you, I would start ASAP on the IC diet, this will help ease the bladder of any irratable foods you may be consuming now, and all for healing in the bladder through your diet. Some do well with this and do not needs to do anything else.

personally I did the IC diet, I also went to the doctor (who wanted to do a bladder distention and give me elmirion)...I did neither. I went to a naturalpath and went this route, and I am doing quite well to date. I took all the supplements the naturalpath wanted for about six months, and then eased off them, and I take nothing for IC now and just eat the ic DIET.

I also did pelvic floor therapy, acupuncture, massage therapy, and I do yoga daily. Yoga and massage therapy are part of my routine to keep stress and anxiety away. :)

Hope this helps!!
Peace
Blue
:pray:


Hi fellow Canadians,
I'm new here. Just joined yesterday. I haven't "officially" been diagnosed with IC yet, but I'm pretty sure that's what I have. I had a bladder infection about two months ago which wasn't diagnosed for a while - I think the doctor was sitting on the results for a while. So it was about 10 days after my initial urine sample that I was told that I had an infection, and who knows how long I had had it before. I was put on Ciprofloxacillin for 6 days. It seemed to help, but about a week after I finished the antibiotic I felt like the symptoms were back again. I went back to the doctor and the dipstick was negative. I was very surprised as I had all the symptoms off a UTI. So went home and drank lots of organic cranberry juice (which is probably one of the worst things you can do for IC after reading some things on this site). So back to the doctor I went again the other day. Again a negative dipstick. I have also had a lot of discomfort in my abdomen, bloating, peeing every 15 minutes or so some days, and very sore "down below" in the vaginal opening. So I have to go for an ultrasound next week and then may be sent to a urologist. The doctor suspects IC. He said one of the treatments is very high dose antibiotics for 3 months, which makes no sense to me if it's not due to a bacterial infection.
Would love to know if anyone lives in the Calgary area, and even if you don't what has helped you. I am quite scared about living like this for the rest of my life. Getting quite depressed. I also have irritable bowel and Hashimoto's. I went through surgical menopause 4 years ago at age 49 when I had prophylactic surgery when I discovered I carry the BRCA2 gene mutation (also had a double mastectomy). I've been using bioidentical hormone creams for two years and Vagifem suppositories (when I remember) - think I must use them regularly.
Does anyone know a good urologist in Calgary?
Thanks,

Jacky

[Mothergoose]

jackydp

Hi and welcome, if you would like to know of IC Dr.'s in Calgary email the ICnetwork or Canadain IC group and ask for a list of Dr. in Canada who treat IC. This list though is Dr.'s who put themselves on the list. I don't have it anymore or I would send it to you. There is one in Edmonton who I have heard is good, but if I recall there is one at the womans hospital in Calgary (?) may not have the right name, but the lady who emails back from that site is very nice and will help you in any way. The people here are very very helpful even if it is just a sympathic ear, or you need to vent to someone.

I suggest to you to start to follow the diet right away even without a diagnoses, it has helpped my alot, when I thiink of all the years I went with being diagnosed and could have felt better by changing what I ate:confused:

For IC there is no one quick fix pill that we all would like. I have heard of trying long term AB's and when I have tried it I felt better on them but symptoms returned when I quite them, there is some thought to that IC maybe cause by a bacteria, but nothing firm is known, but many people find their symptoms come after a UTI. but also IC bladder can react to way less bacteria in our bladdders than other people, i find a dip does not do it for me I need to have my urine cultured and even when the bacteria count is fairly low but present (not enough to treat a normal person It will cause me problems) AB's also have an anti inflamatory effect.

Another suggestion is read all you can about this and when you have your next Dr.'s app take a list of ? for him, if he can't answer them you need a different Dr.

I also found if very helpful to buy the IC survivle guide, it lays out most of the info you need to know in an orderly manner and explains how things inter connect.

ASlot of people find it is a bumpy road to get diagnosed and an a treatment plan that works for you, but you will feel better in time, and it is amasing how much the diet can do on it's own, but for the first few months you can't cheat or you will not be able to figure out what bothers you or not.

We are all different I can eat some of the do not eat foods but I can't eat some of the allowed or maybe allowed foods, such as apples and green peppers.

If you are a coffee addict like alot of us you can buy low acid/decaf coffees, what I have found satifies my craving for coffee and I only do it when my bladder is doing well is a single shot of decaf coffee in a med to large cup of steamed milk, of course this is a lattie, but alot of places put a double shot of coffee in when you order bigger than an a small. If you have a Secound Cup Coffee shop near you, I buy their white hot chocolet, they even sell it in powder form to take home to make.

Well I should go, read the boards ask ? and many, many people will help you, nothing is too graphic to ask, so don't be embarassed. Knowlegde is a powerful thing. Don't let someone tell you not to listen to people here, almost everything you will expirence someone else will have too. Some people say it is only the really sick people who write in here but that is just not true. I am quite frank with my Dr. that I get alot of my info from here, he says that is fine but take it all with a pich of salt which is true for everything you read on the net, but at this site people are truely tring to help you.

Good luck MG

[jackydp]

Hi,
Thanks to all the replies and the great suggestions. I have started the IC diet and have noticed a difference almost immediately - unless it's just coinidence! My symptoms have practically gone since Saturday. It feels wonderful. But I am always on edge waiting for it to come back. I've cut out all chocolate (sob, sob), caffeine, juices except for pear juice, sodas (didn't drink much anyway), and I didn't drink much in the way of alcohol anyway. The first few days were a bit tough as I made such bland food (vegetables in a crock pot with no seasoning, lentils). Since then I realize it's not that bad and you can still eat meat. Just have to watch the ingredients of packaged or canned things. I've been drinking water (filtered) or pure chamomile or mint tea. Eating almonds and cashews for snacks, vanilla yoghurt instead of my usual fruit one. Cut out my vitamins too except for Vit D, and I still need to take my Calcium due to osteopenia (it always upsets my stomach though - IB).

My abdominal ultrasound came back absolutely normal which was a relief, however it would be normal with IC. I did find the name of a doctor who has been recommended by someone I know who works for the Alberta Medical Association, so have passed his name on to my family doctor.

I've sent off for the IC survival kit and am waiting for it to arrive.

Well, must go and make some supper - hopefully a bit tastier than the first few meals! My husband had a fit when he tried it and refused to eat it, even when he added spices and other things to it!

Will be in touch. Hope everyone else is doing OK too.

Jacky

[Mothergoose]

I am allergic to spices and always have been, when ever possible I make myself the same food but prepare it separately. I know this is more work and more dirty dishes but for the most part I have always had o do this anyways. I won't take long and you will figure out ways to satifiy both of you.

My husband is a big spice eater, and the hotter the better, all of my kids take after his tastes so they are all adventuresome when it comes to food, which I am glad, I have had to always watch every thing that goes into my mouth so on top of the IC diet and allergies I am very picky but I have to be. For example I have a friend who goes out of her way to make me things I can eat ast there house when we go there for dinner, she knows to use different utensiles for me but every time we go there for dinner i have and alergic reaction, I didn't want to say anything and make her feel bad when she has tried so hard I finally figured out the other day, that she was doing everything right it was the bit of beceal I was putting on the food after it was made that I was allergic too, perservatives I think I only use butter at home. I figured it out last weekend my husband went to a hotel breakie and brought me breakfast in bed a plain bagel with butter, when I reacted i asked if it was butter he said no they only had beceal. So now I can tell her. I truely appreciate her efforts.

But truely following the diet gets better and easier with time. Before going to resturants you can sometimes look up ingredence and menu online, but be very specific when ordering, get the waitress to say bad to you what you have told her.

Good luck MG

[alabama_worley]

Anyone here from Montreal?

[lalarainbow]

Hi
I am from the Eastern Townships-Stanstead--but am in NS now. I lived in MTl many years ago..Not sure is there is anyone else on here from there or not.
Take care.