09-19-2007, 12:39 PM #1
- Join Date
- Jul 2007
I just do not know what to do. My urgency is bad. I am desperate. I am taking elmiron, I started elivil last night. I take ditropan xl 15. I have taken ulrtam, pyridium today also. I follow the diet. I weighed 142 at 5'6 when this started and I now 123. (I wanted to loose some weight but not this much) I am so upset and desperate. It feels like my entire life, but I really have only been on meds for about two months. I just need some help with my faith. People do get better? I know people do not get cured and have to take the meds but they can continue to live a life? I am really at rock bottom. I do not want to live if I have to feel this pain all the time. How do people do it? I am so depresed about this. I really have tried to be positive. I am so scard.
09-19-2007, 01:06 PM #2
I'm SO sorry you are having such a terrible time....but I think we all do in the begining till we find the right combination of meds, and each person is different in that respect. I know it seems like a bottomless pit right now with all the meds and trying to get the diet right...but yes...it does get better! You are NOT alone! You will get a handle on it soon and you'll feel much better. Don't give up cause we're all here for ya!
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Chronic Axonal Neuropathy & Myopathy
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:
09-19-2007, 01:51 PM #3
I know how you feel, last year at this time I didn't think I'd ever get any better. But, thanks to Elavil, I feel great most of the time. I often go WHOLE DAYS without thinking about my bladder! So, don't give up! Something is bound to help, hopefully it's something you've already started. Elmiron takes a while to work, and for me, the Elavil took about three months to really kick in so that I was basically without flares. Good luck, you are in good company here and as Roxie says, you are not alone.
09-19-2007, 02:36 PM #4
- Join Date
- Mar 2004
- Viera, Florida
Not to sound like a broken record, but everyone is so individual in their responses to meds and interventions. I know life my look crummy and bleak right now, but with a good medical team and you an active participant and decision maker on it you have the outlook of improving your quality of life and improving your pain and symptoms. Unfortunately, it is alot of trial and error in the early days finding something that works well for you. Please don't give up, know we are here for you and have all been there. If your sadness and despair become too uncontrollable though, please see your doctor.
Hugs and warm wishes,
Barb(Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)
[SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
:angel: IC Angel Volunteer Coordinator :angel:
:) Contact me via PM or e-mail if you would like to help
I have learned all about life in 3 words: It goes on! :D--Robert Frost
RSD 7/94 :headbang:
Endometriosis 9/98 :toilet:
Antiphospholipid antibody syndrome 9/99
Kidney stones--too many to count
Factor V Leiden mutation 10/02
IC 6/03 :evilsmile
Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
"Spirit is an invisible force made visible in all of life"--Maya Angelou
"Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]
09-20-2007, 01:42 PM #5
I'm with the rest - don't give up. It can get better, like Barb said, so much is trial and error, but you've got to keep your chin up! I know it sounds corny, but trying to keep a positive attitude can help, now granted, not Pollyanna every minute of the day, hee hee but approaching it as something you WILL get control of and take charge of. It just might take a bit of time, and some sacrifices (read: food ), but there's always hope.
When I was first diagnosed, I was convinced that was the end of ever feeling good again. Now, my husband teases me in his "imitation" of me "Oh, I'll never feel good again!", because I was sooooooo wrong. Granted, not overnight but every day got a little better and a little better. I celebrated little victories even - if I had one less trip to the bathroom that day, that was a wonderful thing! I also tried to view everything as temporary as much as I could. I mean, like the diet - it made it much easier to embark on and stick with it when I put it in terms of something I was choosing to do to help me feel better and I never tried to think in terms of being "doomed" to it. I thought, "ok, this is something I can do for a few months (or as long as the boring phase took) to help my bladder out and it's not forever."
It did take some time to get that attitude firmly planted in my brain, but viewing it all as my CHOICE really did make it all easier to swallow! I also let myself have limited Pity Parties - that way I could let those creeping doubts that were starting fill my brain out and let them go, a good cry or rant could really work wonders. Then I'd pick myself back up and begin again.
I now can eat whatever I like (knock on wood, don't want to jinx myself, hee hee), and have no problems. Very rarely do I 'notice' my bladder - although PMS, Ovulation and constipation can still bring on a weird sensation, but that's about it. I used to take Elmiron, Ditropan and Hydroxyzine (antihistamine, and I take the Vistaril version of it). I now just take the Hydroxyzine. For me, that's one I won't give up. When I added that to the other two, things seemed to improve a bit faster. Could have been all in my head too, ha ha, but still I won't give it up until I have to!
So don't give up, it may take some time, but I bet you'll find your "magic bullet" that works for you - unfortunately IC is a thing that doesn't understand the meaning of "speedy", slooooooooooooow is it's theme, so lots of patience is required as well, which stinks when you are in pain, miserable and want to feel better now!! Just take it easy on yourself, stress can be a huge trigger and aggrivator, so taking care of yourself in all ways is super important to helping you feel better too! Be kind to YOU!!! And pretty soon, you'll find that your good days are starting to overtake your bad days...
Keep your chin up and like Roxie said, we're all here for you for whatever - if you want to rant or celebrate a little or big victory!!!!Hugs,
How do you eat an elephant? One bite at a time...
Harry arrived 2/23/09!
*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.
IC Diet Cheat Sheet:
IC dx'd Nov 2004
Lymphocytic Colitis dx'd July 2005
Current IC Meds
Vistaril 25mg in the evening
Previous IC Meds taken:
Cystoprotek - 2 caps 2x's a day
Elmiron, 100mg 3x's a day
Ditropan, 5 mg 3x's a day
Wellbutrin 150mg 2x's a day for Anxiety/IBS
Pepcid 40mg a day for GERD
Zytrec for Nasal Allergies
Align Probiotic daily for IBS
Users Browsing this Thread
There are currently 1 users browsing this thread. (0 members and 1 guests)
By Lexiebug in forum Newly Diagnosed With Interstitial CystitisReplies: 14Last Post: 12-08-2006, 01:24 AM
By icnmgrjill in forum Posts Worthy of Recognition & AwardsReplies: 4Last Post: 07-24-2006, 01:05 PM
By debbyakamom in forum Pain Management For Interstitial CystitisReplies: 5Last Post: 03-14-2006, 12:25 PM
By SaraJ in forum Flare Coping Strategies For Interstitial CystitisReplies: 7Last Post: 01-24-2005, 04:17 PM
By ad8123 in forum Career Concerns & ICReplies: 8Last Post: 10-20-2004, 07:19 PM