What is Interstitial cystitis IC
Interstitial Cystitis (commonly abbreviated to "IC") is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as ...
Join Now
|
What do you take? do?
|
Watch this |
| View More Posts Ignore |
I am starting with a new urologist next week and not sure what she will recommend, but at this point I am taking nothing specifically for my IC diagnosis.
However, I have drastically changed diet since my diagnosis and removed all things that were causing flares. I had no clue that acidic things were the culprits until the diagnosis. Gave up tomatoes and most fruits right away and then practiced to learn the rest of what affects my diet. Also, I learned I had fibromyalgia and that was causing greater pain, so we began meds for that first - and I find that some of the same meds help both - doing more research and I am convinced there are reasons for this connection! Anyway ~ my Lyrica seemed to be helping both and I have not had an IC flare for almost a year. But now am in a major flare. Drinking LOTS of water and resting. What else do you do? I also learned that the exercises I was increasing this summer might also have irritated the bladder -- bicycle kicks in the pool...who knew? Leg lefts - also in the pool. I was excited since the addition of Savella to my fibro treatment - it gave me strength - and I increased exercise in the pool....and my bladder still "complains" when I move too much, even around the house! Bending to fill the dishwasher....standing too long...sends me back to drinking water and resting -- my friends are envious, but this does get old. So, I see the new urologist next week - and will take her advice. She comes highly recommended. But I have also learned we have to know our own bodies and participate in the process with our doctors. So I'm curious, what do you do? Bless you - and thank you for any sharing of insights. Posted on 09/23/09, 10:09 am |
| 11 Replies | Most Recent | Add Your Reply |
| View More Posts Ignore |
I am very careful not to lift heavy things and standing too long or not getting enough rest will hurt my IC. I am at a point where the diet does not bother me - I can eat or drink anything - no problem, but when I encounter a flare, I am very careful - any kind of straining is a No NO =
even BMs - and believe me, stress does make IC worse...I have been on Elmiron, but besides using pyridium now and then - I am great and have had this over 20 y ears --a little baking soda in a glass of water can really help the ph in the urine if you have pain. The best to you!! 
|
|
|
|
||
| View More Posts Ignore |
I had what I consider a strange treatment for IC, pelvic floor dysfunction, vulvodynia, chronic constipation, and urinary incontinence... it was a sort of PT for the anal sphincter and vagina. They put in 2 probes and attached them to specific muscle groups inside of me and then I got electric shocks about every 10 seconds for 5 seconds long for half an hour. I was scared at first and it was painful at first, I won't lie, however over about 6 months my IC and pelvic floor dysfunction have gotten a lot better. I used to not be able to drive because I couldn't sit in the driver's seat, but now not only can I do that but I can ride a bicycle! I know this treatment is not for everybody but it can work... ask if you have more specific questions.
Sorry about your flare... I hope it goes away soon.
|
|
|
|
||
| View More Posts Ignore |
Thanks so much ~ the visit with my new doctor went so well! Linda, she recommended pyridium - I felt confident receiving that recommendation thanks to your giving me a "heads up" - thank you! She is also going to teach me DSMO for future flares. Hoping to be on my feet again soon. This has been a long healing process - thanks for being there to share your experience.
|
|
|
|
||
| View More Posts Ignore |
I take Librax for IBS and it keeps my symptoms at bay. I hardly ever have pain from my Interstitial Cystitis. You might want to mention it to your uro. Its my miracle drug. pyridium does not alway work for me. I have heard horror stories about DMSO treatment. I tried Elmiron which has crazy side affects. Tried antacids, natural treatments, baking soda, I currently take Atarax at night, I tried changing my diet. And some of that stuff did work for a little while. But since I started taking Librax I can lead a pretty normal painfree life and don't have to limit what food I can eat or have crazy side effects from drugs.
I hope you find something that works for you. Good Luck Tori
|
|
|
|
||
| View More Posts Ignore |
After a day and a half on prymidium I stopped due to burning bladder. Aarrgghh! Took about 24 hours off the drug for the burning to stop. A call to the uro brought her suggestion to try Urelle -- starting that tonight.
Thanks for mentioning the Librax ~ have not heard of or tried it, at this point, I'm a willing guinea pig :) Anything with the potential for stopping the pain. Thank you!
|
|
|
|
||
| View More Posts Ignore |
Other potentials that you might try are Elavil which has helped my pain and frequency A LOT and Uracyst instillations (but I don't think they're available in the U.S. yet). I'm in a similar position as you --- in a flare and in bed missing weeks of university... not good. Hope you feel better soon. xo
|
|
|
|
||
| View More Posts Ignore |
I think the reason it works for me is its a antispasmotic relieving abdominal cramps and spasms. And it makes sense that it would work for the pelvic region too. I have read on a couple sites that this is being given for people with IC too. It works wonders for me! Here is a brief description I found of the drug and its properties.
Librax is a drug consisting of chlordiazepoxide and clidinium bromide and used to treat peptic ulcers, irritable bowel syndrome (IBS), and gastritis. It helps relieve stomach spasms, abdominal cramps, and anxiety related to gastric disorders.[1] Librax is a fixed ratio of these two medications and, as such, is not typically prescribed with an accompanying dosage, but rather how many capsules per day are to be taken. It comes as a capsule to be taken by mouth and is usually taken three or four times a day, before meals and at bedtime.[2] Chlordiazepoxide is an anti-anxiety medication belonging to the benzodiazepine class.[3] Its use in IBS is thought to be due to its calming ability for patients that have IBS symptoms that are worsened by anxiety. Clidinium bromide is a synthetic quaternary ammonium antimuscarinic[4], a sub-class of a family of drugs known as anticholinergics. It works in IBS by decreasing gastrointestinal motility.
|
|
|
|
||
| View More Posts Ignore |
I use Dong Quai... also known as Angelica Sinensis. It's cheap and really works. I found out about it through a Chinese pharmacist but it's also sold at Whole Foods
|
|
|
|
||
| View More Posts Ignore |
An update ~ first huge thanks to all of you who helped me through a very painful time. Before your responses I had no clue what to do while waiting for my first appointment with the urologist. The pain was awful.
Different things work for each of us - but the instillations are working wonders for me. We are just using heparin and lidocain to sooth, numb and start coating and building a lining. That and the Urelle for other break through times....and the suggestions you gave have helped me to feel I have some means of dealing with this. Thank you - thank you so much!
|
|
|
|
||
| View More Posts Ignore |
I was just diagnosed a couple weeks ago. I've been in pain since May, at first I thought it was my endometriosis causing the pain.
I decided to try an exclusion diet to find what food were bothering me. I'm on 20mg of Antitripylene at bedtime. I have been on the diet for only a few days, I still get pain daily. Its frustrating, I've given up the foods I love, I take my pills, what else do I need to do. Sorry to vent, its just that no one I know has this, so no one knows what I'm going through. Thanks
|
|
|
|
||
| First | Previous | Page: 1 2 | Next | Most Recent | Add Your Reply |
