Interstitial Cystitis - Tumblr Posts

might I recommend a heated mattress pad? They’re great for heating your entire back and also allows you to use the heating pad elsewhere

Not enough heating pad for the ouchie so I’m just rolling around like a rotisserie chicken

Hey! I've had IC for umm, maybe 4 years now? I'm really low on the pain scale for it, so my worst days are being unable to sleep and a constant pinching or burning (and those days are usually my fault). Just enough to be really uncomfortable or inconvenient, but not debilitating. It's only gotten worse over the couple years I've had it, mostly cause I'm horrible about my diet. I'm not sure if I've got any new advice for you, but I'll tell you what I know!

Drink lots of water - even if you're following the ideal diet for you and keeping stress low, being dehydrated is going to aggravate it. Also if you did eat stuff bad for your bladder that's bothering it to no end, try to 'flush it out' by drinking lots of water. Doctors don't know what causes IC, but one common theory ig is that something is something is wrong with bladder walls so the auto immune is sensing the stuff in your urine and thinking you have a UTI (this is my dumbed down understanding, so take with a grain of salt). So I always imagine that the tiny particles of water irritating food are stuck to my bladder walls so that's why long after I ate something irritating it's still inflamed and not healing, so drinking lots of water can help. Bladders probably like being wet anyways.

IC network diet (free online PDF. Go look it up) - I'd be a liar if I said I followed it. Sometimes I try, most of the times these days I don't (yeah I'm a privileged motherfucker) practically because it is hard. But it's a good list of ingredients and stuff to avoid or 'how bad' is it for you. The things most aggregating are lemon, tomatoes, spicy yummy food (I love Indian and it's just 😭 so many no-no foods. Just acidic), basically I've grown a taste for 'acidic'. Sometimes I can't even enjoy acidic food well anymore because the flavor of acidity is too strong since my brain kinda labels it as something kin to "poison" or "owwww later". That's something I had intentionally developed when I was feeling more careful about my IC. They don't say this, but I've seen it from IC people online - THE MORE PROCESSED THE FOOD, THE MORE IRRITATING. And i think it's totally true. I can't identify anything in a crappy package of Raman that's bad for IC (at least things that I note), or in the practically-steralized-probably-not-real-sausage sausage patty the school gives me, but it's still an irritant. A nurse who helped a lot of patients with IC told me that red food dye was an irritant, I'm sure it's true but I'll die before I let them take away my cherry flavoring. And chocolate really does irritate me, I was devastated when I realized it was true. My understanding is the list of stuff they tell you to avoid is a pretty good list, but everyone will be more or less sensitive to certain things. Some foods might not bother you like they bother a different IC individual. So if you can identify what does it doesn't bother you dope.

Prescription meds- I'm prescribed these biggish blue pills that turn my pee blue (or if I'm bad about hydrating, seafoam green to dark lime green) and they help calm my bladder down. I'm supposed to take them 4 times a day as needed. If you do alcohol or weed they'll really intensify the symptoms and with alcohol (which you shouldn't do alcohol anyways for your bladder but still. I did hear that certain hard liquors were easier on your bladder than others? Online chat room gossip), make you really nauseous and give you heartburn. I find these pills make my stomach really acidy and I'll get heartburn if I eat stuff that isn't in my safe diet range. I think they also mess with my antidepressants, idk how exactly but I'm sure they do. I mostly think of my pills as "menthol blue". When I looked them up that was the main ingredient. They were prescribed to me when I expressed i couldn't follow the diet while at college, since all the food is processed crap and gross as high hell. The name on the bottle is URO-MP (which is ig generic for Uribel says capsule ?) it really does help a lot. A nurse at my urologist told me even if you're doing everything right, you can still get flare ups for like no reason. (I tried to explain to her this was definitely my fault, since I'm a naughty son of a bitch). So remember that this isn't your fault, any you're doing the best you can with the abilities, knowledge and resources you currently have (and don't tell me you're not doing your best, if you could do this "best" you'd be doing it right? So that's the ideal, but it's not the best you can do at this moment. Be nice to yourself). I had to go to my urologist for these pills btw, not my primary.

I was told by my urologist, that IC sometimes just miraculously disappears in people's thirties. My urologist is very old, he did my father's surgery when my dad was like 18 which is when I started going to this man. He's awesome. This is gospel I now release into the world. I can't wrap my head around why this happens exactly. But I imagine whatever bladder wall damage has been done healed up. So I always figured if I was a good little IC girl and hydrated and followed my diet to the best of my abilities, one day it would heal and go away. Speaking of healing, I have found over the years it's very clear - when bladder is irritated, your body is literally attacking and damaging your bladder. When your bladder isn't inflamed and you do all the good things it'll heal and hurt less.

I think that's all, I'm sorry I didn't do a very good job of breaking up the sections, if you find it difficult to read I'll happily edit it and make easier to digest. I'm ADHD so I can't keep a story linear lmao.

Also, take days off when you need it most. If you won't be able to do your job straight, stay home. I'd going to work will make it worse, stay home. Especially if your boss/coworker has been taking days off willy nilly. If they felt the pain you were in, they'd probably be out Everyday. This is a chronic pain condition homie. And autoimmune disorder! :D (the autoimmune was funny when I was dating someone with type 1 diabetes, which is also an autoimmune disorder, right when I got diagnosed. Taking shots all day every counting carbs is totally harder than my own experience with IC)

Oh just remembered, fake sugars are also bad for IC I think. I haven't noticed it but I also have always avoided fake sugars and I'm too terrible about my diet to notice particular things very often. Elimination diet is what I've heard of the most, if you can do safe food and branch out to see if you can eat something without pain, it really clears up your personal list of what you can or can't eat. But yeah, it's friggin impossible sometimes 😅 I know.

I've had UTI symptoms for 5 fucking days and I'm going crazy.

I was told ages ago that I most likely have Interstitial cystitis but received no care plan for it aside 'there's no cure uwu so try to reduce ur stress and change ur diet 🫶🏼' does anyone have any advice because I've been suffering with flare ups for years and nothing works aside waiting it out, which can take weeks and is hell to work through.