Ever since my ER visit, I’ve been reading a lot about ICS and even though the doctor diagnosed that in 2019, I’m not so sure I have it. I’m seeing a urologist next week and I’ll get a definite diagnosis then. One of the things I’ve read is that you should do an elimination diet to see what your triggers are. I joined a support group – which I may leave soon because my symptoms are nothing compared to these people, I don’t know how they function. At any rate, it seems that pretty much anything can be a trigger and people are willing to give up coffee, spaghetti, chocolate, alchohol, any scented soap or detergent, and a myriad of other things.
What.
The
Actual
Flock?
I enjoy coffee. I like my beer. i NEED spaghetti on a regular basis. Chocolate is something I need in moderation, but I went two weeks without any and I was thinking, yep, worth the possible migraine, gimme an M&M or twelve.
After doing a lot of reading and a lot of research, I came to the conclusion last night that I can’t live like that. Is it living if you can’t do or have the things you enjoy? Asking me to give up coffee, sauce, an adult beverage, would be like telling me I could never read another book, never knit another stitch, never sew another doll dress. There would seriously be little point in living.
So I’m not gonna do it. I’m looking into alternatives – accupuncture was mentioned – and crystals – I firmly believe in the power of crystals. Tomorrow or Monday, I will find a store, since the place I used to use seems to have closed, and take my list and buy myself some crystals. I will discuss accupuncture with my urologist. And I will eat and drink what I like, even if I have to gobble Prelief tablets with every bite. I will not let this defeat me.
Bladder spasms are awful. They’re terribly painful. But they stop Eventually they stop I’m not going to tiptoe through my life in fear of them. I just don’t think so
Suziecreamcheese Sings the Blues 
Living in fear is no way to live. I hope you can get some answers and this issue figured out.
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Oh I will. I’ve never met a doctor who intimidates me – not even the great nephew who’s a resident at a fancy hospital 😁
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I cannot comprehend why Big Pharma hasn’t made a plethora of medications to treat ICS, or any other medical condition out there, instead of allowing OTC drug companies to have profits from Prelief (I researched it, and it’s not exactly cheap).
I get why you need coffee every day, but I’m guessing you don’t need spaghetti, beer and chocolate each and every day. Much like my diabetes, it’s a process of learning what to trade out to enjoy something you like but maybe shouldn’t have. When I go out with my bestie for lunch, it’s pretty much a guarantee that I’m going to have French fries. It is the only thing I’ll eat that day with carbs, and I’ll go extra light on the carbs the day before and the day after.
I wish you strength on your continued journey of finding what works for you!
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I agree, I don’t need all of those – except coffee- every day. This is a fairly rare condition so there’s no money in it for Big Pharma. But imagine a commercial like that horrible one for Jardiance! I’ve never been one to be told I can’t do something so this could get interesting!
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I don’t think my mom changed her diet despite having this problem. She felt a lot like you do about food and quality of life. Oh yes, for some reason ICS is worse during the winter-to-spring and the summer-to-fall season changes. That alone might be why you are having a problem. Symptoms might go away as the weather/temps stabilize.
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I’d not heard of this before your er post. Good for you for choosing life.
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Prayers are appreciated. I’m not sure it’s the correct diagnosis and I’m going to find out. 💪
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Prayers going up.
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Knew I could count on you 😁 Thank you
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I’m sorry. 😦
What if you did 30 days of real elimination. A system reset of sorts, then slowly reintroduce items back in. Maybe your body needs a break not a complete abstaining.
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I’ve done a modified version. I’m just waiting for the urologist now
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Sending {{hugs}}!!
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Sorry for the spasms, I have colon spasms, they also are not fun, but fairly short lived, so I understand spams. My sister mentioned a medicine that she takes for spasms for her esophagus, it you want I can ask her what it is that she takes.
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Sure. I’ll be talking to the doctor next week and can mention it
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hyoscyamine
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