Hope

[dr.hope]

In the past six years I have probably been to between 20-30 different doctors I have been diagnosed with everything from bacterial infections to an overactive bladder today I saw Dr. Hope that's not his real name but that's what I will call him he is the first doctor who ever mentioned IC to me. I told him my stories about all the doctors, all the different diagnoses, and all the pain. The pain has been such a constant in my life for so long I don't know what it feels like to not be in pain. I was drinking allot of cranberry juice even taking a cranberry dietary supplement because I was told that would help. I was very surprised to hear that it may be the cause of my pain. I'm very scared about possible surgery and the future to come but I am also very anxious to be well and to not be in pain. There are still more test to come and allot of therapy but I hope I can post a message that says I’m free of pain. I don't know how or why this has happened to me but it has been the source of allot of my depression and despair. I am very sad because this problem is embarrassing and hard to explain. It's hard to go to work and school when your in pain and constantly going to the bathroom and sex is out of the question I don't even want to have children until I’m well. I have even stop working out because it was so hard with the pain, frequency, and urgency. I will pray that all of you get well soon. Please pray for me. Right now I am crying because I don't think my heart can take another disappointment or misdiagnosis but I am hoping that through this I can find the answer and find peace and joy in my life again.

[ICNDonna]

:welcome: I'm very glad you found us.

I know you'll want to read the information in the Patient Handbook at http://www.ic-network.com/handbook There's information there about the IC diet; I suggest you read that information first and give the diet a try.

Sending encouraging hugs,
Donna

[traceann]

Hello and welcome to the gang! Donna has given you some great advice, do check out the Patient Handbook, it helped me immensely. And the diet section is very helpful!!

Again, welcome, look forward to seeing you around the boards!!!

Hugs!

[Oxana]

Hi, :welcome:
Get the advice what was given to you. The diet is great thing. I'm sure you will feel yourself better soon. Just think about positive stuff.

[tigger_gal]

~~welcome to the icn~~ you will find a wealth of info thru-out these pages..
Brat

[dr.hope]

I have been reading the patient hand book. I was just wondering if it is better to just eliminate everything on the problematic list or to just eliminate the most harmful things like cranberry juice, coffee, carbonated beverages, tomatoes, and tobacco. I'm not sure what to eat all the things that are problematic are the things I normally eat it's like I have to start all over but if that's what it takes to relieve my pain I don't mind. Also I am always very lathargic I guess part of the reason is because I get up all doing the night to go the bathroom. Does anyone else feel this way? I work in a sit down job and it just makes me so tired and my legs ache allot even though I don't move around much because of the pain. :help: :toilet:

[July]

I'll say prayers for you! You sound like a very strong person, and that is inspiring to all of us! We are glad you found us. I think education is the key. This website offers a wealth of info, and I'm always learning new things from the tips/suggestions given by users of this board. Education helps dr. visits go easier.

[traceann]

Hey there Dr.Hope! What I did in the beginning (when I was diagnosed and found this place and info on diet) was what was recommended to me. I ate soley out of the "usually ok" list for about 3-4 weeks or until my bladder and pain calmed down. Then I started adding things in, one at a time, from the "may be ok" list. If after 2-3 days I had no increase in my symptoms, it was a keeper. If however, I did have an increase in symptoms, it went on my no-no list to be re-tried at a later date. If it didn't pass the second test, it went on my permanent no-no list. Fortunately, I have discovered I can eat a lot more things then I thought I would be able to!! :woohoo: Then as I started to feel even better (and braver :biglaugh: ) I would occasionally try/test one of the foods on the "usually problematic" list. And I have been surprised that so far, not too many problems from that list.

I also use Prelief tablets all the time. I use it before I eat anything that's a acidy food, and I use it before foods I am not so sure of their acidity. It's been a life saver and allowed me to have much more diet freedom, than without!! If you haven't tried it yet, I suggest you give it a go!! It's great stuff, I am never without it, I carry it in my purse, I have a bottle at home...etc.

I hope this helps a little bit!!

Hugs!

[Oxana]

Hi, Tracey!
Tell me please, how you know about your bladder reaction on not right food?
Do you really have a big pain or just frequency? So far, only paine I had it was look like before period. Mostly, what my bladder have in this point - it's frequency. And all the time when I go to bathroom, I have a lot of urine. It's can be gone quickly so. I can have such reaction on the same food, wich was good one day and I gues it'is bad on another. I can't undestand it. I also drink a lot of whater. I do it to make my urine less acid. I think I need to oder anti acid stuff for urine in ISN. I confuse about the potassium in it, but it only 1% and ladies wrote here that it's unlike from what doctors use for potassium test wich go directly to the bladder.

[traceann]

Hi Oxana!! Once I had my bladder calmed down for the most part, I only added in one thing at a time (sometimes I messed up and ate 2-3 different foods, had problems, then couldn't tell which food item was the problem! ;) ), and would wait a day or two before trying something else to see how my reaction would be.

At first my reactions were spasms of my urethra (bladder too, but not as much) and frequency would go up. Now, if something bothers me, my frequency is the only thing affected (for the most part - occasionally I get a few minor spasms) Yes, it can be hard sometime to pinpoint what is causing the troubles as sometimes, it's not even food related, but can be stress, or just plain old bladder being cranky.

I drink lots of water myself, I am never without it. Ever! If I am at home, I constantly have a glass next to me, or even at work, I have my bottled water I sip on all day. I buy the larger ones, and that lasts me all day at work, and I know I am getting enought in me that way.

Have you tried the Prelief? I can't remember if you said you have or not. They are very helpful with acidic foods, but reducing the acid in that particular food. I love them and always have them around, for acidy foods and foods I am not sure about. You take them right before you eat a potentially offensive food ;)

Yeah, the dietary potassium reacts not like the instilled potassium into our bladders, so it can be ok.

Hope this helps a little bit!!
Hugs!

[VickiB]

Hi dr.hope!

Before being diagnosed I was drinking cranberry juice and popping the cranberry supplements too. The worse my symptoms got, the more I drank -and I probably don't need to say what a vicious circle that was! My IC symptoms turned out to be very closely related to food, so the IC diet has worked wonders for me & I highly recommend it!

I also saw more doctors that I could count, was told it was this & that (so many different things), that for years I gave up on modern medicine altogether. The point you're at now, before diagnosis, is truly the darkest hour! Hang in there! Things will get better!

Hugs,
Vicki

[rhea]

...not IC related, but when I had my back surgery my neurosurgeons name really was Dr. Hope...thought how can I go wrong. 10 years later and still going strong....

[Oxana]

Tracey, thank you for your answer!
Yes, I use Prelief and when I didn't pay attention that time about possible having IC, two years ago uro gave me Prelief the first time after usial cictoscopy. He told me that many people have sensitive bladder. I took it for two years, watched my diet and forgot about bladder. But when I started eat spicy food again I started to feel the simptoms again. It took about 5 months before having frequency and burning again.
I saw my uro today. I like him so much! He reminds me russian doctors. It's diffrent, in Russia the doctors spend more time with patients and try to find the reason, why the patient has these simptoms. American doctors mostly treet the simtoms only. In Russia we try to do different lab more and rule from it. It's really interesting for me that here I give my urine anytime when I see the doctor. It can be morning or afternoon. I know that only morning urine, (the urine when I wake up) is very good for lab and doctor can find something in it. It is really important and more, to find something the nurse needs to take the urine by sterile catheter in sterile test tube, she needs put it for some day in the special place and wait if something will grow in there. I mean some tipe of bacteria.
I told my uro about that my symptoms already twice started just after yeast infection and it's possible that i can have it in my bladder or some tipe of micoplasma. He told me that I can have some test about it. He is ready to do everything to help me and all the time he spends time with me and answers on all my questions. I can ask about his advice and about any medicine what can help me to feel better.
Today I got the Vistaril. The doc told me to see how it will work and use this drug as needed. I want to add it to the Elmiron every day, as you Tracey, told me. I also took the Urocit-K, it's urinary alkalinizing agent. It has potassium citrate which is unlike from what is using for potassium test. I also bought AZO yeast against yeast infection. It's homeopathic medicine, will not hurt anyway. So I am ready to continue my treatment. :)

[traceann]

Oxana, you are so very welcome! Your doctor sounds absolutely wonderful!! You are very fortunate. he's definitely a keeper. :woohoo:

Wow, it does sound much different with the Russian system. :hmm: Sounds rather nice too, hard to find doctors who take time with you anymore, they seem too interested in volume sometimes, "how many patients can I see in a day" instead of quality. Ugh, it can be very frustrating. :headbang:

I am glad you got the Vistaril! I know it's helped me and many others. And shoot, helps with my nasal allergies too, :biglaugh: I have to say though, the first week or so I was on it, I was pretty groggy in the mornings, and it seemed to increase my frequency for a bit. But, I gave it a good fair chance to work, and the increase in frequency feeling went away after a few days to a week. And I got over the grogginess too, once my body adjusted to it. Now, though, I can tell if I take it too late in the evening, as I am tired the next day. So I have learned to take it a couple hours before bedtime, seems to really make a difference for me.

I wish you much luck with all the new things you are adding in, sounds like a very good plan to me!! It's very nice talking to you and you can PM me anytime!!

Take care and hoping you are feeling good!!!

Hugs! :)

[Oxana]

Tracey, thank's again for your message. You take care about yourself goo too! :)

[traceann]

You are welcome Oxana!! :)

Hugs!