inerstitial cystitis

sandyvanderstelt
sandyvanderstelt Posts: 82
edited September 22 in Food and Nutrition
anybody else with this bladder disorder?? i'd love to have somebody to talk to about it and about your diet. crossing my fingers on this, i know it is pretty rare. ugh i spelled it wrong and i can't change the title. its interstitial cystitis.

Replies

  • bitterbuffalo
    bitterbuffalo Posts: 4
    I do! I do not know how much help I would be with dietary issues though. My biggest triggers/irritants are many medications and vitamin supplements. My IC story is rather long! I have never spoken to anyone else with this issue so feel free to contact me.
  • sbb780
    sbb780 Posts: 4
    Hi, I'm actually going to get some testing done soon to see if I have this. I'm going on January 5 for the testing. Until my doctor mentioned it to me last week, I had never heard of it before. I'm hoping that I don't have it because it seems a bit daunting; but then if I do have it, I would finally have an answer to my symptoms. I'll let you know if I have it when I find out. How long ago were you diagnosed? What has your diet change been like? Are you on any meds too, or just a diet change so far?
  • sandyvanderstelt
    sandyvanderstelt Posts: 82
    I was diagnosed over a year ago, so I know a lot about it by now. But as far as the diet goes, there are many different websites that say many different things. If I added them all together I wouldn't be able to eat anything! lol. The worst things for me personally are caffeine, chocolate, and citrus. But there are plenty of other things I can't have, including tomatoes, spicy foods, cranberry juice (even though it was suggested to have), lunch meat, and so on.... it sucks!!! I have had 3 cystoscopys done.... none of that helped. I was on elmiron (the only medication made specifically for it) but had to stop taking it because I lost my insurance and it costs over $300 a month. Although, I don't think it was helping much anyway. Now I get a bladder wash done once a month. It is quite painful, but I think it is helping now. It did take 3 times before it started to help though. My condition is quite severe, most people have milder symptoms. I have pain, almost all the time. It feels like a bad bladder infection, but it is basically constant. sbb780- what are your symptoms? and thank you entropy!
  • sbb780
    sbb780 Posts: 4
    Sandy, I have IBS and endometriosis so a lot of my symptoms I've been blaming on those. I feel stupid now but I never even considered that something could be wrong with my bladder, even though I was having pain associated with my bladder. It wasn't until my doctor started asking me about all my symptoms that we realized that my bladder might be the source of some of my pain. In addition to my endometriosis and IBS symptoms, my main complaint is pain. I get cramping after I empty my bladder. And if I have to hold my bladder and don't go as soon as I feel the urge, then I get really bad pain that stays with me for a few hours after that. I feel crampy and like I have a UTI almost all the time. I've just started looking into the dietary restrictions and it seems pretty daunting. I can't imagine my life without chocolate. I LOVE chocolate! But then again, if it would make me feel better, I could probably give-up a lot of things just to feel better. I can't believe that you've been diagnosed for over a year now and you still are in constant pain. From what I've been reading, it seems like there isn't any one treatment that works for everyone. It seems like there is a lot of experimenting to find what works best for each person. I hope that you find your solution soon, or at least something that gives you some relief. ~ Sarah :)
  • sandyvanderstelt
    sandyvanderstelt Posts: 82
    yeah that's why I want to talk to other people that have it, because there is no one thing that is helpful for everyone. Actually there is no cure . The bladder washes I get are actual an old treatment that is rarely used anymore, but nothing else was working for me. My urologist wants to send me to a specialist across state but I can't afford it right now. Sarah- it sounds like you might have it. people with IC usually have another condition also, and I believe endo is a common one. I was tested for that last year (I don't have it).
  • sbb780
    sbb780 Posts: 4
    I'm sorry that you lost your insurance and can't afford to see the specialist right now. :( It's good that the bladder washes are working. It must be a rare treatment because I didn't read anything about bladder washes while I was researching IC in the last week. After looking into IC, it seems like that might be what I have. I really hope not, but it seems to answer a lot of my symptoms. I guess I found out when I get tested in a month.
  • Dom80
    Dom80 Posts: 146 Member
    I have IC as well. I was diagnosed almost a year ago after suffering for almost 2 years with every doctor telling me I was crazy.

    I was on elmiron and several others including bladder cocktails or installs. I have since discontinued all meds and am on what they call a " no grocery aisle" diet, which means you buy mainly all fresh veggies and fruits, dairy and fresh meat. The idea is to stay away from as much processed food as possible. It takes more time and I have to go shopping more often but I do notice a huge difference. I for one no longer have to wear depends diapers and let me tell you for being 30, its kinda embarrasing to first of all buy them and second of all being in public wondering if you can make it without wearing them.

    Im not cured, but I am learning to live with the disease. I cant enjoy all I used to, but hey Im not dead yet. If you can accept your fate of having this disease the next step is learn your triggers.
  • Dom80
    Dom80 Posts: 146 Member
    also if you are looking for additional support and have a facebook acct check out the ic support groups in particular the group: Confident Choices. It is run by a dietician/nutritionist that also has IC. She also has several books out including recipe books specialy catered to us IC patients.
  • TaraMaria
    TaraMaria Posts: 1,975
    I started a support thread on the support board! Please join it! :o)
  • bitterbuffalo
    bitterbuffalo Posts: 4
    I have noticed my IC symptoms have improved lately - I am trying to avoid processed food and eat 80% raw produce (organic if possible). I was cleaning up my diet for other reasons, so thank you for pointing out this correlation.
This discussion has been closed.

Categories