Registered: 1421323112 Posts: 6
Reply with quote #1
Hi, after several years of problems, my GP and I have worked out I am suffering from IC. Flared since August last year, much better by mid-December and then Christmas was misery. I am really concentrating on diet (trying to deal with contradictions like No Milk Chocolate but OK to have dark) which is complicated by being allergic to wheat (30+ years), and intolerant to oats, barley, dairy etc.
Now I need to be back to fitness and back to work and I am only able to do so by eating a very limited diet and filling myself up with anti-histamine (Fexofenadine hydrochloride), anti-spasmodic (uronid) and paracetamol (unable to take Ibuprofen). I've just ordered marshamallow root and Prelief. But it's a lonely struggle! My family are reasonabley understanding - but still expect me to do what I normally can, and that is a problem. __________________ Cathie Wilson
Registered: 1330011948 Posts: 10
Reply with quote #2
Hi Catherine, try not to get too despondent. I was diagnosed 11 years ago by a cystoscopy (camera into the bladder) and the urologist did a hydrodistensionn (filled my bladder with water to stretch it). There are treatments that you can try and which may be successful. Has your GP referred to a urologist? I had ten years of remission with only a flare about 3 times a year for a week or two. Over Christmas I have had a flare that has lasted a month (unlike me) so I went to my GP. He has referred me to a urologist on the NHS and I am seeing someone next week. In the mean time he has prescribed me with Amitriplyn (not sure of spelling) and I have slept through the night just like I used to before this horrendous month long flare. Also daytime frequency has eased to near normal (just like before the flare). Could you ask your GP for it? It could very well help you. Don't give up hope - you need to see a urologist as there are treatments that will help you. It is very depressing being in a flare and no one seems to understand. I think most IC sufferers have been in the same position as you i.e. people not really understanding the pain and discomfort. I would urge you to try to get a prescription from your GP.
Registered: 1323861157 Posts: 1,776
Reply with quote #3
So sorry to read of your ongoing discomfort, Willow has given you some good advice, and I am sure that now you are here on the Forum you will find lots to help you. A couple of other suggestions that may help you: Can you telephone our special Nurse Line on MONDAY am sure Karen will be able to offer some more support and suggestions. Do Look around the COB Website for more advice and info. Consider becoming a member of COB, this will give you access to so much more than we can cover here on the Forum, also the Office may already have support contacts nearer your home base plus they will also send you a wonderful, joining booklet and you will receive the quarterly magazine. Do keep posting we will always be here to listen. Kind regards Kate __________________
Registered: 1421323112 Posts: 6
Reply with quote #4
Thanks to you both. Yes, I have joined COB and am using the Bladder Friendly Diet book. After a terrible day yesterday, I'm doing OK today. Is this up-and-down a common feature of IC? I've kept to very "safe" foods today....
__________________ Cathie Wilson
Registered: 1323630517 Posts: 973
Reply with quote #5
Very much so - IC is a very unpredictable and indvidual condition. It seems that no 2 people with IC have the same triggers or experirce the same symptoms as each - although there are a lot of symptoms and triggers all IC sufferers experience.
It's a case of learning what upsets you and your bladder and finding an alternative way or avoiding that trigger completely. For instance, sone IC sufferers find yoga very beneficial but I tried it once and my bladder soon let me know it wasn't a fan!! I've since discovered that anything involving stretching in the abodomen area results in a flare.
I've also found that I can drink specific brands of drink (such as brands of lemonade) but not others. Sometimes I can tolerate a supermarket own brand but not a brand that is considered a premium brand.
Some IC sufferers also feel that other products such as washing powder or body lotions, even vitamin supplements can cause the bladder to react negatively.
Discovering your personal triggers is a minefield but once you've found your main triggers hopeful your bladder will play nicely with you.
COB have a specialist Nurse helpline session on Monday. Karen, the specialist nurse is lovely and very supportive and sympathetic. Why not give her a call on Monday and ask for advice on how to handle the rocky road of IC. After speaking with Karen I'm sure you will find it was one of the best phone calls you've ever made!
Pleas keep posting, I have found that, the forums and its members are very supportive and there are a lot of forum users with a wealth of experience and expertise who are kind enough to share their knowledge and experience to support others.
__________________ Bladder Health U.K. Forum Message Board Moderator. Kent Support Group Co-Ordinator Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent. Please support Bladder Health UK by become a Bladder Health UK member - click here for more details: http://bladderhealthuk.org/membership