Newly Diagnosed Feeling Down Vancouver Canada - Jan 18 08

[VSBY]

Hi, I am new, just joined, and feeling lousy. I thought what I had was an infection for 3 weeks, no change. Got into the urologist Friday Jan 18 08 (which is usually a 4 week wait in Canada). He said I have IC! So now I feel lousy, depressed, I did not have coffee this morning as I can see it is a no-no.

I am a healthy, fit 49 year old working mother of 2 teens. I am so confused over what I can eat, what I can't, I printed off the list..but feel alone, angry, frustrated and most of all uncomfortable. I can't stand the feeling like I have a balloon full of urine in between my legs..to pee or not to pee!

I need some IC buddies!:toilet:

[hdb1982]

How were you diagnosed? By symptoms or testing? What medications are you on? IC can be very overwhelming, especially in the begining. You came to the right place for support and a wealth of information so :welcome: to the ICN. Don't ever hesitate to ask ??'s, there aren't many things that one of us haven't went through at one time or another. We are all here for you and will do everything we can to help you understand this puzzle, to the best of our abilities. It is a very complicated disease. Good luck and we are here for you!~ Heather

[lolobits]

Hi there dont get down. I went a full year not knowing what was wrong. I now have been on elmiron, elivil, atarax for almost a year and am doing really well. I even have 5-6 day remissions. I followed the diet pretty strictly for about 4 months then started to test foods once I felt good to see what flaired me. I found that for me the things that were the worst were tomatoes and onions and chocolate. Are you going to start the medication?

[GriffsMommy]

:welcome: to the ICN! I'm so sorry that you got the diagnois of IC but it's very good to be diagnoised so early on. I'm so happy you found us. There really is a wealth of information and support here. I know it is overwhelming at first but it does get better. It is usually suggested that you only eat things on the usually okay list for awhile to calm down your bladder from the foods that would be bothering it and then slowly start adding things back in to see what does bother you. I hope you start to see some relief soon. As Heather said, whatever questions you have, feel free to ask, and we'll be happy to help the best we can. :grouphug:

[ICNDonna]

:welcome: to the IC Network. I'm very glad you found us.

I absolutely agree that being told you have interstitial cystitis is pretty overhwelming at first. But once you get yourself on an IC diet and begin feeling better, it isn't as awful. My IC was diagnosed 33 years ago this month and one thing I like to share with anyone who is new to IC is that there is life with IC. It can take time to find the most effective treatments for you and know which foods and drinks are a problem, but most of us do --- and most of us feel good most of the time.

Sending warm healing thoughts,
Donna

[leelee88]

:hi:Hello and :welcome:to the ICN

I think all of us here can relate to how you feel. It is very frustrating in the beginning. But the best advice I can give you is to try not to let all this get you down.
Read and learn as much as you can. Be your own advocate.

There are so many meds out there that can help you get this under control. And never give up. Try one for awhile and if it does not work then go to the next one. I have tried many before I finally found the right mix that has been working for me.
Well if you need anything please don't hesitate to ask..

[VSBY]

:smile tee HDb1982, lolobit, firffs, donna and leelee, you have all made me feel welcome, supported and to know there is life after IC.

I will try to answer you questions as best as I can.

I have had recurring UTIs over the years, though it wasn't until 2006 that a couple of them were very hard to get rid of. 4 weeks of antibiotics and prynium(the little magic brown smarties that turn urine yellow)

I had surgery on a very very rare cyst that developed on my belly button in January 2007 (urachal cyst) At that time the urologist scoped my plumbing to make sure that my bladder was okay. All showed clear and healthy. I never had an infection since.

A few days before Xmas this year, I felt like I had another UTI. However, 3 weeks of 2 kinds of meds :mad:and no change at all.

To see a specialist in British Columbia (most western province in Canada) We must have a referral. We are very short of doctors here and the wait can be months. :cussing:My doctor gave me the referral, I made the appointment (mid Feb). Last friday I couldn't handle the pain, I call the urologist office (great guy and so his medical office assistant) She took my information called me back in 30 mins and said the doc would see me right away!!! (really great guy!!):angel:

He spent 45 minutes explaining that he thought I had IC. He gave me ELMIRON 100MG 3 x a day and to take tums up to 4 of them between meals. I found this website, read like crazy yesterday between the depressed feeling, printed off the food list and stopped drinking coffee today. I also took advil today and yesterday because I felt rotten, in pain and today a headache, this could be caffeine withdrawal!?

I am fit,:woohoo: love to eat and cook but will have to go with the food changes ASAP. So today I had mint tea, hot milk, white bread (english muffins) I love Mexican food and hot spice, so no more of that forever???? Thank goodness, garlic appears on the okay list of food:bow:!

I went to my exercise class today, walked on the beach with my girlfriend. Had a good cry this morning and my husband got me going to keep moving.

No other tests, no other meds. I am going to my family doctor tomorrow morning (Monday jan21) to fill him in and get some more information, support.

If you think that there is anything else I need to know, to do or not to do, please tell me. I am very direct and can take it.

I am so glad that there is this website, unbelievable:pray:!!!!

Thank you so much. I look forward to your support and supporting others. :flower:
VSBY




(we don't have prelief in Canada!

[dancemomof2]

:welcome: to the ICN

I agree with the others, diagnosis is overwhelming. Glad you found us here and hope we can help you get through all the newness of this.

[redhead43234]

Everyone is different but Prelief works really well for me. I even ate chicken soft tacos at a mexican food restaurant last night! I found mine at Walgreens, I am not sure if ya'll have one of those in Canada.

BTW, the dx of IC is really scary at first, but what is scarier is not knowing how to control it! It has been about 3 wks since I was dx with IC, but I am feeling a little bit better every day. I am finding out what works for me as far as stress, meds, and diet is key, and that would be my advice to you. We are all here to support each other!

[leelee88]

Just a little info on Advil.. That is a big No No for alot of ICers.. I really flare from it.. I know you did not want to here this but it's true. If you are having pain you could ask your Dr for Ultram. Drs seem to prescibe that faster than Narcotics. Hope this help..

[VSBY]

Hi
Is it normal to be very tired or is it the post emotional stress of the diagnosis. Emotional hangover?:confused:

[leelee88]

If you are flaring it is very normal and if you are under a lot of stress. I know when I am flaring it exaust me..

[leelee88]

VSBY,

Here's a link also that has some diet tips on it.. Hopes this helps..

http://www.ic-network.com/forum/showthread.php?t=45259&highlight=traceann

[lisabar36]

Hi and :welcome: I think you were given some great advice. This is a great site and full of lots of information and support. I want to also say as Ronda mentioned, I also cannot take Advil, it really irritates my bladder and causes me problems. I hope you start to feel better soon. :) Lisa

[VSBY]

Hi :dance: Thank you so much for the information and support. This site appears to be more than I could ask for.

Today I would say I am a 4.5/10 yesterday it was a 4. I am only on Elmiron and nothing else. Though this morning I felt rough so I took a Prydium 100 with a class of milk. It gives me a stomach ache. It seemed to help with the pain for a while at work.

I had a great sleep last night so I hope to again tonight, only up once.

I think I am in pretty good shape. I am confused as so many members are taking a lot of medication, frankly it looks like A LOT. But, it also appears that more people have multiple aliments.

The heat (magic bag) feels great. It is weird though to put a hot pad between my legs, but I have to say, very soothing.

I haven't figured out, what is going to work best. My family is supportive (they don't do much) but don't make it any harder. I took two short days at work and have a great employer who likes to take care of me. I run his company of 17 staff. Stress at times.:woohoo::woohoo:

Any other food do's and don't would be great. Does Prelief work for you. We don't have it in Canada, but I live on the USA/Can ada border and can go get this weekend.
Vsby

[lolobits]

Hi there my name is Lauren and I was diagnosed a year ago and was so overwhelmed so I can relate as all of us on this site can. The Elmiron is great also you might want to consider Atarax an antihistamine and Elavil a antidepressant. I have been taking all three the Elmiron 3 times a day and the Atarax and Elivil at night (very low doses of the Atarax and Elivil). These are very traditional treatments for IC and they have helped me tremendously!! My one non traditional therapy is aloe vera juice at night just 4oz. to help with constipation and also years ago it helped my IBS tremendously (yes mom is always right). Dont get down you have people who dont even know who care about you because we are all in this together. We want to see each other get better.

[VSBY]

Hi Lauren
Thanks so much.

I don't think I need to take anti depressants at this point and I sleep alright.

What is it specially that the meds you mentioned to for you. You said they help you tremendously. Is that the symptoms of pain or sleeping, or???/ can you describe this more please.

I think the tired is my body fighting pain and the emotional hangover. The headache is getting better, but sleep helps a lot.

What is really frustration is I just healed from a completely different syndrom call Mal De Barquement. It is a neurological disorder similar to Vertigo but not. It is the feeling of being on a boat floating. I took a long vacation, after 7 months of motion, my head stopped. and now this..so yes I am sad, but functioning pretty well.

Taking anti-depressants to me is a very serious matter. The pill does not cure the depressants and rather therapy would be in order ( I am in the counseling business)

I printed off copies of the diet, one for the kitchen one for my purse. I am considering purchasing the IC cook book for idea. I love spice, hot things, pickles tomatoes...etc coffee withdrawal now. So, I need ideas for food. Do you have the cook book or does anyone reading this have the book?

Thanks
My name is Susie:rolleyes::rolleyes::woohoo::bonk::lmao::hi:

[lolobits]

Hi Suzi My symptoms were pain and urgency and frequency and because all of the symptoms got worse at night I had a terrible time with sleeping. The meds relieved al of the above. The Elivil is used to relax the smooth muscle lining of the bladder thus relieving some to all of the muscle spazms is what my doc told me.
As for the cook book go for it I am probably going to buy it thi weekend for myself. I actually started to eat some spicy foods like spicy sushi after 6 months of treatment but I always drink like a gallon of water with it so as to dillute my bladder

[VSBY]

:angel:Hi
This morning, I feel pretty good right now. Although I am trying not to anticipate that it will progress in the other direction as the day goes on. No coffee is hard, but I can't complain if so much of this can be controlled with diet. This is much better than a diagnosis of something that is life threatening.

I slept well again, only up once which is normal for me. My family doctor said that we hope we caught it early enough and that might be why the flare is getting better each day. I am still tired though.:hi:

My next concern is that I am going on vacation to the Caribbean:dance: in 5 weeks with the whole family. It is an all inclusive so there is likely a buffet.:woohoo:

The good thing about this is that i really think ahead of time as to what I am going to eat. I am healthy, fit, slim etc...for almost 49 years old. I also need to maintain calm as much as I can because I also suspect that stress makes it worse.:tsk:

So off to have my cup of spearmint tea (I hope I can have a coffee again some day!)

Susie

[SharonA]

:hi: Susie...

I take 25mg of Elavil (Amitriptyline) every evening and have done so since 2001. At a low dose, Elavil works to interrupt the pain signals in the brain. That way, I do not feel much pain at all. Before starting the Elavil, I was in horrible pain. At this low of a dose, it does not work as an antidepressant but as a pain med. Some say it helps them with sleep, but it does not with me.

Have you been taking Prelief? It helps remove acid from food upon eating. You can find information about it here: http://www.ic-network.com/index.html I bring this product to you attention because it could help you when you are grazing at the Buffet on your vacation. :) :) :)

[VSBY]

Hi Sharon and gang!:hi::hi::hi:
Thanks for the information.

I have to go to the USA this weekend to buy some prelief. They don't sell it in Canada.

I started the day off great and now it is 7 pm my time and I STILL FEEL good, not great, but sometimes the nights before bed is worse. The hot pad works wonders!

I will keep taking the Elmiron until I see the Uro again on Feb 4th.

I have ordered from my local library first to see if I want to buy it. I am not great for following any recipes at all. I collect the cook books and make up my own stuff!

Susie:woohoo:

[Quinn24]

Hi VSBY:
I live in Vancouver as well. Maybe we can chat if you feel comfortable doing that? I'll let you decide. We do not have Prelief in Canada but we have the same problem that is sold at Walmart in their Equate Brand. Just ask for the acid Neutralizer Equate Pills. They do the same thing as Prelief. Let me know if you want to chat via e-mail. We are close in age but I have no kids, just a dog and cat!!
Quinn

[sue1]

Welcome VSBY...

i was diagnoised few yrs ago,,was put on elmiron for a yr & stopped b/c it wasnt helping me & my hair was thinning. i just watch what i eat & drink. orange juice is a HUGE no-no. i am in a flare up right now & came here for some support. hang in there.

[VSBY]

Hi Sue1
Thanks, I have been very diligent with my diet this first week of diagnosis.

I feel so much better already, it is unbelieveable. No coffee, no citrus and nothing spicey and hot or tomato.

This morning I heated up hot milk and added a bit of instant coffee, a cafe leche kind of thing. It was great, no bad effects..

So either Elimron and the diet is working or I am just lucky.

When I go to Cuba, I want to ask my doctor for some test strips to test my urine just incase I flare up there to ensure I don't have an infection, though I will have anti botics with me inc ase it is an infection.

S

[Kriste]

I too have been newly diagnosed here in Vancouver and feeling quite alone and overwhelmed.

[camackin]

I live in Vancouver, too. I was diagnosed in Oct, but have had really bad chronic pain for about 8 months now. I think I've had ic for a few years though - I had mild symptoms, but my family doctor didn't know what it was and I let it slide =(. Until last June when I got a bladder infection. It hurt so bad I thought (and the doctors) thought it was a kidney stone, which I've experienced before. The infection went on for 2 weeks before I got my urine cultured and started antibiotics. Ever since then, I have no bacteria in my cultures and my pain has been bad all the time. Not so much on the frequency though, I go probably 10X a day and now down to 2X per night. I haven't slept through the night in at least a year now.

I had a bad experience with a urologist in Vancouver - he refused to even attempt to diagnose me, kept telling me to "come back in six months". Now, let's see...if HE was in chronic pain and could barely walk, would he wait six months for a diagnoses? um, no. So I saw a different uro instead who was great and started me on Elmiron right away (oct 2007). Almost a month ago he did a bladder distention on me. I think I'm still healing, but pretty sure it's helped a little so far. I don't know if Elmiron has helped a little, too, or if my bladder is just slowly becoming less inflamed from what happened in the summer. I do feel slightly better than 3 months ago when I started taking it.

I'm so exhausted all the time from being in pain. I do find that Prelief helps me eat some bad foods (like a latte in the morning) with out having to pay for it later so that's good. I'm still waiting to see whether the Elmiron or bladder distention will provide any significant relief. I'm taking Amatrypaline (10mg at night), though not on a regular basis - maybe I should try again, but I find it makes me too sleepy all the next day, even when I take it really early in the evening. I haven't yet tried Hydroxyzine, but I will.

Heating pads and baths help. So far any pain killer I've tried hasn't helped too much. They sort of take the edge off, but don' t get rid of the pain and upset my stomach. Pyridium does work on the burning sensation when you urinate, but that was never a big problem for me anyways.

When my pain is really bad I also feel achy all over and feel like a have soar throat - don't know if anyone else feels that, too? I'm pretty sure I have mild IBS, too, because I get painfully bloated a lot of time after I eat.

Maybe it was that I waited so long to see a urologist about it? If I had gone when my symptoms were mild, treatment might have worked better. I don't know.

I'm going to see a psychologist next week for the first time. She specializes in chronic pain and illness. I'm hoping some visualization techniques or something can help with the pain. I also feel hopeless and depressed that nothing has really worked - is this my life now? I'm overwhelmed by anything else that goes wrong in my life because I have no emotional reserves left to deal.
I'm pretty positive the psychologist will help. I was also thinking of trying light therapy as well in the mornings.

Anyway, I don't know why I felt the need to post my whole story just now. I guess I'm wondering if any one else in my area has had a similar experience.

[soho]

I'm just down the road from you in Surrey! Still being tested but pretty sure it's IC. Let me know if you want to meet for support! I know I could sure use it.

amanda

[funkygrandma]

I am in Langley and just joined ICN. I have suffered from IC for 5 years now. I have had two rounds of instillation which worked fairly well, the last one being 2.5 years ago. I am currently flaring and in a lot of pain. I called the Langley Walmart as I read on a post that they might sell Prelief however, they do not carry it.:cussing: The next time I am there, I will ask the store manager about the possibility of ordering it. I will advise everyone on the success or lack thereof for this. Please let me know if you would like to meet sometime as we are all so close.

[VSBY]

hi
I have been feeling really great lately. I am very careful with what I eat and drink. Blueberry juice is great for me. I love it and it doesnot effect my bladder.

I can eat hot foods. I had a flare up a couple of weeks ago and I am sure it had something to do with what i ate... I was so upset, i forgot to write down what i ate...

I have had my fingers and legs crossed with out a flare up for a while.:angel: some one or thing is looking out for me:bow::bow::bow::bow: like a blessing.

I do believe that stress is a huge factor in my health. I work out and eat well. and try to have fun as much as possible...i love dancing and laughing....keeps me sane...

Read about diets is a really good idea and talking to a dietician is a good idea too
vsby

[sailawaygrl]

I am in Langley and just joined ICN. I have suffered from IC for 5 years now. I have had two rounds of instillation which worked fairly well, the last one being 2.5 years ago. I am currently flaring and in a lot of pain. I called the Langley Walmart as I read on a post that they might sell Prelief however, they do not carry it.:cussing: The next time I am there, I will ask the store manager about the possibility of ordering it. I will advise everyone on the success or lack thereof for this. Please let me know if you would like to meet sometime as we are all so close.

Try talking to the pharmicist, before I could find it on the shelf at Walgreen's, my Target pharmicist was able to order it for me. Many times the pharmacy can get you over the counter meds that the store does not carry. Good luck to you.
Sandra

[Mothergoose]

Hi I too went to belingham to buy prelief, but I find I don't use it too much, I just really watch what I eat. I found the prelief constipates me. If you are going down to the states I buy azo which is prydrium in a 92mg dose, I hear it will no longer be avaible in canada soon, it is the stuff which turns your pee orange. It is OTC in the US.

Which Dr. uro did you see.

[funkygrandma]

Hi Mothergoose and thanks for the advise. I see Dr. Paulus who is based in New West/Surrey. He is very good but thankfully I do not have to see him very often, only when I flare, like now. I have just started the IC food plan so I am not sure how it will help or which foods I have to forego but anything is better than the pain.