Interstitial cystitis trigger foods - have they always affected you or came on suddenly ?

[CandleCat]

Hello, has anyone with IC noticed pain from trigger food or drink come on suddenly one day or have they always been irritating to you on some level?

[Alaine1 Administrator]

Hi,

I’ve never had any reaction from foods which I’ve been told is quite unusual as most people have a few foods that irritate their bladders. They are usually acidic type foods. Have you searched online for IC diet sheet? I’m about to start a night shift but will look during my lunch break at 1am. I hope this helps

[CandleCat in reply to Alaine1]

Thanks for your reply.

It’s interesting foods don’t trigger you. Do you know what causes you to have flares instead ?

I’m starting the IC diet from now to see if it makes a difference. I’m not sure if I have any but I think alcohol could be related as I’ve drank before a few flares but not all, although there are other times I’ve drank and been fine. The pains seem to be getting more frequent though so definitely worth a try!

I hope I don’t have to cut loads out forever as I love spicey food and coffee in particular and I’m also a veggie so not left with much.

[Alaine1 Administrator in reply to CandleCat]

Hi,

Unfortunately I don’t get flares I have severe symptoms all of the time without my immunosuppressants I’m on which have been used off licence to treat my IC. This isn’t a usual treatment unless everything has completely failed. I have a refractory type so nothing I’ve tried has made any difference to my symptoms which is apparently not the norm. Most people if they try a treatment or a combination of treatments will get some benefit. Immunosuppressants for IC generally don’t work for IC as they’ve been trialled before in clinical trials but it’s thought my case might be autoimmune. Doctors don’t like using them as they make people more prone to infections especially severe infections. Over the summer I had to be hospitalised with a kidney infection which had failed oral antibiotic treatment and had seen my condition rapidly deteriorate. Thankfully I responded to IV treatments. There are other potentially dangerous side effects. Doctors will weigh up the case for and against using them with most people except a tiny percentage of people being allowed them for IC. One criteria is all current treatments must be tried for a reasonable period of time including minor surgery if advised eg Botox. If had this twice including two sacral neuromodulation attempts which failed completely. I also have other autoimmune conditions so that might be a factor as well as to why I was allowed immunosuppressants.

It’s unlikely you’d need to cut out loads of foods and some of the foods that make you flare you might be able to eat occasionally rather than daily so don’t despair. I used a dietitian to help with my diet as I’m slightly underweight and struggle to keep weight on so didn’t want to fall into the very underweight category. You could ask for a referral to an NHS dietitian but different areas have different criteria for referrals to this service so some areas only those with certain medical conditions are allowed to be referred. This is the case locally for me but as I moved my GP out of my catchment area I have no idea what they are now. I used a private dietitian to help not just for this but also with my weight and other chronic illnesses.

[CandleCat in reply to Alaine1]

Hi, really sorry to hear you have been going through all that, that sounds like a lot to deal with. Do you mind me asking how old you are and how long you’ve had these symptoms?

It’s good that the IV treatment has helped a bit, thank goodness for that. I hope your condition improves and that better treatments come along for you and for others with these conditions.

Thank you for the advice on the dieticians as well I will look at this!

[Alaine1 Administrator in reply to CandleCat]

I’ve had symptoms since the age of 16 along with endometriosis and adenomyosis symptoms. I’m now 43. I’ve also had other illnesses that have taken ages to diagnose. Besides all of this I have a better quality of life than before on the immunosuppressant medications and my other medications for endometriosis and adenomyosis + other medical conditions. Keep us up to date with everything. I also forgot to mention about women’s health physiotherapy which helps a lot of IC patients

[CandleCat in reply to Alaine1]

It sounds like a complex situation. I’m glad that the immunosuppressants help you !Thank you for the Information on the physio too

I’ll update as I get more information. Done my IC diet food shop today so I’ll see if it makes any difference

[Alaine1 Administrator in reply to CandleCat]

Thank you. Good luck with the food I hope you find something that helps your symptoms