Thread: Newbie Here!
09-28-2008, 06:17 PM #1
- Join Date
- Sep 2008
I never thought that I would be in a support group like this, but here I am. My name is Dwayne, I am 36, and yes... I am a male. I understand that only 10% of people with this disease is male so, lucky me, here I am. Actually, I do not believe in luck but it fit with what I was saying. For the last couple of years, I had been treated for Prostatitis, only to find out from my latest cystocopy, I have IC. I am relieved to find out exactly what I have, but of course, I am not thrilled with the diagnosis. It has been tough on me having to refrain from so many foods that I had enjoyed since I could eat for the first time; but, as I told my wife, that if it means for me to get better, then so be it. I know that I am supposed to drink lots of water, but because I got tired of going to the restroom so many times, I had slowed down to drinking a lot less than I should be. There are times when I do drink quite a bit of water and am really trying to get in the habit of doing so at all times. One thing that I get so sick and tired of is that when I do go to the restroom about 80% of the time, it has such a foul odor and my doctor's nurse explained to me that it is blood in the urine. If anyone else knows what I am talking about, please share.
Anyway, my doctor has me on santura but because of its side effect that causes constipation, I think I am going to ask him to put me on something else only because I normally have a great trouble with constipation as it is. I have been trying to get my disability for some time, but have been denied. I do have an attorney working on my case and he represents "Advocates for the Disabled". Well, I think that I shared enough for for my first post. God bless!
09-28-2008, 06:58 PM #2
Hello and To the ICN!! We have been seeing ALOT more men lately! Glad you came aboard! You can find a lot of helpful info here.. You should check out the Patient Handbook. Just click the link at the bottom of my signature! If you need anything just ask!!Hugs
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
Diet Reference Sheet:
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
09-28-2008, 08:17 PM #3
- Join Date
- Sep 2008
I am also a male. Ok. You may have seen some of my other posts by now. I am just thankful you did find the website and that you were willing to post a message. By the way, I will state that my urine has not been funky and that I do believe 10% is not necessarily correct. Oh! I have heard that, but more seem to be getting diagnosed. Regardless, I do understand that some individuals are on disability because of this horrible disease.(and hope and pray that your attorney will get the job done for you) Oh, yeah! You are not the only one that never expected to be in a support group like this. Of course, you are right that it is good to have a name for what you got. That still does not mean we are thrilled to have the medical condition/disability. Oh, well! I happen to work 6:00pm-2:00am and have been on longer than I was thinking. Yep! I am tired and dealing with allergies and/or sinus trouble to the point that my voice has not been sounding the same.(or back and forth) Ok, then. God is always good. Amen
09-28-2008, 10:00 PM #4
- Join Date
- Sep 2008
Thanks Ronda and Statesboro!
I will definitely check the handbook out. I have been reading quite a bit of information from this network site. I thank God that there is such a thing here. Yes, Statesboro, you are correct, God is good! I am a Christian and actually I am a minister and still trying to get through college, but at least it is online and I don't have to interrupt classes because I have to go to the bathroom all of the time. I actually have other disabilities besides IC, unfortunately. Thanks for replying. God bless you all!
09-29-2008, 01:25 AM #5
I hope we continue to see you around!Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
09-29-2008, 02:39 AM #6
I'd just like to add another to the IC Network family. I know you'll find a lot of information and support here.
Sending warm healing thoughts your way,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
09-29-2008, 05:51 AM #7
- Join Date
- Mar 2007
Being that you are a male, I'm not sure if medications that we females take work the same for you. When I had terrible urge and frequency, ditropan xl in combination with utira-c (urelle generic) helped me alot. Ditropan is notorious for causing constipation, so if you use it, you should be using something like miralax to keep the bowels moving. I hope this helps. Good luck to you.
10-23-2008, 09:29 AM #8
- Join Date
- Sep 2008
I am still here
I apologize for not continually responding. I am terrible about writing and contin- ually posting. I recently saw my doctor, and he is wanting to put me on elmiron, and two other medications. He called it a "cocktail". He was supposed to see if I could get on an assistance program since I do not have any insurance and still fighting for my disability.
I have doing my best on avoiding foods that I cannot have anymore and have been doing pretty good. I have been eating almond bark to satisfy my chocolate cravings lol! Well, that is all for now. God bless!
10-23-2008, 10:51 AM #9
Hi Dwayne...I am sorry that I am tardy with this, but it is heartfelt... to the ICN.Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
If not there, then here
Link to the ICN Patient Handbook:
Link to the IC Diet:
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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