new guy on the block

[theodean50]

hi all...
i've been evesdropping for a few days now and like to say you are
a great bunch of "back-rubbers" for each other and that's great.
my heart goes out to all those who suffer, silently or otherwise.
i was diagnosed feb 2004 after cysto and hydrodistention with biopsies
that showed lots of mast cells...i was thankful it wasn't cancer of the
bladder...i prayed that i could handle IC, but i was scared to death of
a cancer diagnosis. i have been in and out of "flares" since the first
twinge of pain was noticed in sept of 2003... some flares are mild and
quite manageable and others are simply awful... no place to hide, no sleep,
you all know the story....
i am a 50 year old male..respiratory therapist x 20 years.. i've seen my
share of the medical profession... my motto: dont get sick...
my uro stated that by taking large biopsies with hydrodistention will force
the bladder wall to heal or scar or whatever...i went about six weeks of
post biopsy pain and it did ease for a short period of time..he considers
himself a monotherapist..one treatment at a time.. he now wants to hydro
disdend even more with more biopsies...i said, "it didnt work the first time,
what makes you think this will help...i have a thick bladder wall, and more
scarring will only make it stiffer" he didnt know what to say...
i am now seeing a chiropractor specializing in kinesiology...after urine tests
in his office finding large amounts of sedimentation, and kinesiology testing,
he suggested i have a functional intracellular analysis of my saliva done
because he thinks my problem is gastrointestinal... you are what you eat..
interestingly enough, the anaerobic part of this test came back positive..he
feels an anaerobe may be lurking somewhere..? causing IC? who knows..
i am now taking lactobacillus and will see him next week...i've gone the
surgery route, now the naturapathic route, and will, if necessary, the
medication, elmiron, etc..route..... the holidays were quite painful, due i
feel, to the stress....current flare is subsiding somewhat..i cant eat any
triggers..must hydrate throughout the day equally, no big gulps...i gotta
new set of rules...it's the new me!!! :woohoo: thanks for letting me vent
and i will by all means add any news or info as it pops up..god bless you, my
new friends..

[SharonA]

Just wanted to say hello and :welcome: . Glad you are with us. :) Hope you stick around and continue to post.

[hazellin31]

Hello and :welcome: to ICN. I did the same thing you did, I lurked for awhile and then finally posted. I'm so glad I did. That is interesting that you visted a gastroentonologist (wow, spelling I have no clue!). My mom brought that up to me saying that I should go and see one and I'm considering it. Hope you are feeling well and nice to meet you! :grouphug:

[VickiB]

Hi & welcome theodean50!

Glad you decided to post! Yes, we all know the pain story! Who knew one's bladder could be the source of such misery!

In my case the 'you are what you eat' certainly applies. I'm one of the lucky ones who's IC pain is closely related to the foods & additives I eat.

I hope you find relief in your search for treatment. I never went the naturapathic route, but am interested in how that works out for you.

Vicki

[trytosmile]

:welcome: to the gang ....

I've been using this tool for a couple of weeks now and it has been a great support system for me. Why I didn't join years ago I don't know. I've been into the IC network website more times that I can count, just never went this far. So glad I did.

I too tried the natropathic route but unfortunately due to out of pocket cost it was more than I could financially handle. I am on disability so my income has been cut drastically. Did it help, in some ways it did. Helped with my energy levels, etc and that in turn helped the IC. Hope one day I can return to that avenue and soon.

Again, welcome

[lalarainbow]

Hi and welcome to you.
This is a great place to come to learn and to vent..
You take lactobucillus (sp) pills and they don't make you worse?? I figured they might be like yogurt and could cause a flare?? Hope you find answers and feel better asap..
~~Pam~~

[Dixiefireball]

:hi: and :welcome: to the icn family so glad you found us :grouphug:
if you have time please check out www.ic-network.com/handbook you may find some more treatment op. there to think about. the IC diet is there also.
it seems like your already on the right track to getting well I just like to tell all new comers to read over the handbook its so handy.
sending you hugs and prayers
Rhonda

[theodean50]

Hi and welcome to you.
This is a great place to come to learn and to vent..
You take lactobucillus (sp) pills and they don't make you worse?? I figured they might be like yogurt and could cause a flare?? Hope you find answers and feel better asap..
~~Pam~~


i didnt see a gastro doc, but a chiropractic physician...being medically
trained, i've generally regarded any of the alternatives as quackery..
however, as time goes by, i've learned that medicine, in itself, is mostly
cutting (surgery), and chemical alteration of body chemistry (drugs)..
not to say that medicine is quackery...it has immense benefits and
applications..i just believe that not every answer comes out of a little
black bag..i must exhaust all avenues before i give in to this miserable
disease..i will not let it become me...i am me..period.
my chiropractic doc believes something is causing this problem with my
bladder, of course, and he wants to go to the root of the problem and
treat that. my uro doc wants to cut some more..i like the former approach
at this point vs the latter.....there are more issues to discover in my body
and at this time i'm more prone to less chemistry and a more natural approach
to treatment with less chemicals for my aching bladder to dispose of.
thanks for your response, to you all a painless night of sweet dreams.
theo

[darlene]

Theo. Your uro and chiro should both know that the cause of IC is still unknown. Some of the newest research is pointing in the direction of a mutant protein(antiproliferative factor), present only in IC patients, as a possible cause. It prevents the bladder from renewing and maintaining the bladder lining. If this turns out to be the cause, cutting and distending the bladder won't be a cure. Chiros don't have any training for diseases as complex as IC. Get 2nd and even 3rd opinions before allowing any procedures that make you uncomfortable. I have had IC since 1969, and if any easy cure was available, I probably would have tried it by now. Good luck, and be careful! Darlene

[Rosalie]

Just saying G'day Theo.
Nice to see more men on the boards.Its interesting to see someone from a medical background getting into the natural therapies. I worked for a Nathuropath for three years and she was only able to help me on a temporary basis. The problem always came back. I have also tried accupuncture which gave some relief as well.
You will find many hints here to make life a lot easier.
Rosalie

[theodean50]

Theo. Your uro and chiro should both know that the cause of IC is still unknown. Some of the newest research is pointing in the direction of a mutant protein(antiproliferative factor), present only in IC patients, as a possible cause. It prevents the bladder from renewing and maintaining the bladder lining. If this turns out to be the cause, cutting and distending the bladder won't be a cure. Chiros don't have any training for diseases as complex as IC. Get 2nd and even 3rd opinions before allowing any procedures that make you uncomfortable. I have had IC since 1969, and if any easy cure was available, I probably would have tried it by now. Good luck, and be careful! Darlene

thanks darlene...every darlene i ever knew had nothing but the nicest,
and logical things to say.

[Betsie]

:welcome: Hey Theo.

Well here you are, lots to read, friends to make and lots of questions I am sure.

You will find many here who are willing and capable, if one persn doesn't have an answer they will send you to the person who might....we all try to impart our "wisdoms" here...we aren't always right, but I think we all try very hard to help each other out. did I read that you are not on Elmiron? If so, I am curious as to why that is, are you a naturalist...or are you trying everything else first.

whatever your reason, if you are contemplating, do consider the time involved in the help for your bladder. I think many here would give the 6 months as the general kick in time....just wanted to share that. Its been a wonder drug for me, but it sure took a long time. :bow:

Anyway welcome and visit all aspects of the ICN, especially the main section where everything you didnt even know you wanted to read about is...LOL. :biglaugh:

Never fun to get the Dx, but we are always happy to lay out the welcome mat! :)

[theclownster]

Hi Theo! I wanted to add my warm welcome to the ICN. It sounds like you are doing what you need to do to feel at peace with your treatment. Do what you feel is right and when you're not sure, there's lots of people here who can support you.

I typically prefer natural remedies and hate to take medication of any kind. However, since the diagnosis of IC - I've opened my mind a bit about that. I do take meds - because in the end it's about feeling better. Unfortunately, Elmiron did not work for me - in fact it put me in a flare ever time I tried it. Other meds, like elavil, atarax, and ditropan have helped tremendously. The main thing they have given me is - sleep! I can actually sleep through the night now (most of the time) - I never thought I would see the day when I could get some sleep - but I do! It can change a person's whole attitude.

Keep us updated as to how you do and what's going on with you. Take Care!

Warm Healing Thoughts~
Jennifer

[Sarojini]

Just wanted to :welcome: you to the ICN!!!

[Babs RN]

Welcome to the ICN Theo, we're always happy to have new guys on the block!


Hugs and healing wishes, :grouphug:,
Barb

[wife2TJ]

:welcome: Look forward to getting to know you.

[bunnymoomoo]

theodean, just wanted to throw in my own "Welcome!" i have to say that for someone who's been recently diagnose, you sound very up-beat and full of perseverence! which for me, is very encouraging! i'm glad you found us :p

[jeanniebug]

Hello! I just wanted to send you a big :welcome: !!! I'm glad you've found this website. I lurked too for awhile before I posted. There's so much to read and learn from this website, and these boards are a wonderful source of support and inspiration to me. I have found out more information from this website than any doctor I ever saw, as far as treatment options etc. Knowledge is a power, right? :) Take care and it's good to have you with us.

[Hangin' Tough]

Theo,
My name is Steve, I am 39 and was diagnosed in May of 2003. I have tried many things, and so far, nothing has helped much. I have the "terrible triad" (my version) pain, frequency and urgency.
You will find that the ladies (and a few gentlemen) on this board are intelligent, compassionate and will give you whatever information that they have to help you.
There aren't many men on this board, but IC is IC, gender really doesn't matter when it comes to suffering. Welcome aboard.

Steve

[twiggy]

Yet another welcome! By all means, get more than one opinion. Surgery is the most drastic step so I am surprised this was a first step. There is an interesting post by a urologist from Florida who also goes the surgical route. You will find it in the "Great Debate" section and I believe it was called "IC Not A GrassRoots Movement." I think you are wise to be careful of surgery until more options have been explored.

[traceann]

Just wanted to add another :welcome: to the mix! Sorry it's a bit bleated, but better late than never!!!

Tracey :)

[edie]

I am telling everyone to buy these three books, especially this one, "You Don't Have To Live With Cystitis" by Larrian Gillespie, M.D. This is great!
"The Interstitial Cystitis Survival Guide" by Robert M. Moldwin, M.D. and last but not least as you may be looking into alternative therapy, "To Wake In Tears" by Catherine M.******. Knowlege is Power to me and I wanted to learn all I could. The diet worked for me. I take Valium on occasion to help with tension. Not often though. I don't like pills. Also, I believe in distilled water. To help keep the bladder flushed out. No chemicals in that! I have not had a flare in 2 years! Good luck! Hope you find the right course of action for you.
Edie

[Sharing]

Wow 2 years thats great!
Do you follow only the bladder diet?

Stay Well!