Thread: 28 - Newly diagnosed
05-25-2005, 01:46 PM #1
- Join Date
- May 2005
28 - Newly diagnosed
I was diagnosed with IC today, after fearing the diagnosis for months. Thanks to this website, I realized my symptoms were an early warning.
I was wondering, have you found that IC is progressive? I have relatively mild symptoms without pain. Actually, my only symptom is a feeling of not being completely voided leading to frequency.
I'm curious as to what to expect in the future. Also, how many years does it usually progress over?
Thanks all for your help.
05-25-2005, 01:51 PM #2
Welcome to the board one can not say what symptoms you may have . But the best advice I could give you is to find a good urologists.
05-25-2005, 01:54 PM #3
- Join Date
- Sep 2004
to the board...we are all here for you and understand EXACTLY what you are going through...I have had I.C. almost 39 years, since I was 6....it feels exactly the same as it did when I was 16...irritating! I have the pressure and frequency...grrrr...hate it...I have started doing elmiron instills at home,,,so far I have done 2..I have been in a flare for almost a month..I had to quit my job and I have been job hunting...stressfull stuff......who knows what the future holds? I am doing MUCH better than I was this time last year, before I had any treatments at all....I am hoping that I can relax soon and this flare will go away once I find a job....After suffering with IC for 40 years, my bladder was removed in Dec 05...YAY!
05-25-2005, 02:00 PM #4
Normally IC doesn't progressive. However i'm one of the few that did.
remember to take your elimron (i figure he put you on elimron this a common first step) try the IC diet. it helps so much. you can find this information at www.ic-network.com/handbook this is a great site and has load of information. on treatments diet etc.
we are here for you and care and most important we understand.
please keep us updated on how you are.
sending hugs and prayers
RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!
05-25-2005, 02:15 PM #5
Normally after treatment begins IC doesn't progress but does improve. For me, I had great improvement for a while...than progressed...sought more treatment...improved...progessed....sought more treatment improved. That is the cycle I am in since meds seem to usually help me ...but after a while the effect goes way down. It isn't the same for everyone. In comparisson to when I first diagnosed I am a lot better. I don't think you should fear progression. You found this board...which should make a big difference in how well you do. I am very glad you found us...knowledge is power and there is a lot here!
I know your symptom well...sounds like you may be retaining some. Have you been tested for Pelvic Floor Disfunction?
I am quoting some info from a frequency help list I am working on.
"If you have severe retention consider learning to self cath.
If your problem is retention or bladder contractions practice relaxing the pelvic musscles. When you go to the bathroom and go...wait and relax and message your urethra with a tishue or something.
Use a topical analgesic, alternate heat and cold,
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation, can help spasms
Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
http://www.algonot.com/ Algonot-Plus®: Algonot, LLC, is the maker of a line of nutraceuticals specifically designed to help with the symptoms of IC, chronic prostatitis, and arthritis. Their latest products, CystoProtek and ProstaProtek, combine the original Algonot-Plus formula with sodium hyaluronate:
o Chamomile (Matricaria chamomilla) mild sedative, reduces inflammation, relieve menstrual cramps, can help bladder spasms http://www.ic-network.com/cgi-bin/u...=Foods-Tea.html
cornsilk tablets are unreal!!!!! Good for burning but may up your frequency. Are mild dieuretics
Lavender Oil (the sent is a great for relaxing but to rub on bladder can also have a calming effect. Good for spasms)
• Moisture (Moisture helps relax your pelvis is calming to your bladder)
Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession) Recommended 3 times a day for 20 min each
Warm wash cloth
http://www.ic-network.com/forum/sho...90935#post90935 Newbie kit from the oldies to the newbies
http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.Faith, Hope, and Love,
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
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.
or find me on facebook http://www.facebook.com/kat671?ref=profile
Be the Miracle! & Pay it Forward!
firstname.lastname@example.org please contact me...I am here to help!http://health.groups.yahoo.com/group/ICinWI/ if your from WI please contact me!
05-25-2005, 02:26 PM #6
- Join Date
- May 2005
One more question...did you guys take Detrol, and if so, did it work?
Thanks so much for your feedback, i really appreciate it. Kinda down tonight : - (
Will try to stay positive though!
05-25-2005, 03:00 PM #7
The disease is not usually progressive... only a few patients do progress.
As for Detrol, I took it, but it did not help. In fact, it made me retain urine so badly I had to learn to catheterize myself to empty my bladder. HOWEVER, it has helped many people and my advice is to give it a try for a week or two and see if it makes a difference in your frequency. If not, there are many other treatments to try!****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. 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.
05-25-2005, 03:51 PM #8
My IC is better (with treatment) than it was when it started. I think part of it was that my symptoms were mild, I was diagnosed rather quickly, and was put on meds very quickly. I rarely flare these days.
I am one who was helped by Detrol LA. By itself it only helped a tiny bit, but when we added other meds I felt better and better. I have tried to go off of it several times, but every single time I do I flare up!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
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