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Interstitial Cystitis
Dec. 9th, 2016 12:45 pmSo, I went to the doctor on Wednesday to see if I have interstitial cystitis, and I've been waiting to post about it because I wanted to calm down a little, but that doesn't seem to be happening, so I thought I'd just go ahead.
So, the doc does think I have interstitial cystitis, albeit a mild case. Okay, that's pretty much what I thought was going to happen. He told me I'd need to follow the IC diet (that's the main form of treatment), gave me a medicine to start taking, and told me I would only need a cystoscopy if the condition worsens or doesn't respond to treatment. So far, so good.
Then I get home and really start looking at the diet guidelines, and it's so much more restrictive than what I was finding online. I had pretty much resigned myself to not eating citrus, chocolate, caffeine, and carbonation. I miss those things, but I've been doing okay without them.
Here's the food list I was given:
( cut for length )
When I saw this list, I really started losing my shit because between this and the celiac, what's left? Am I doomed to a lifetime of dry salad, dry meat, dry veg? No hint of brightness to my food ever? No fruit? How do people on this diet not get scurvy or extreme vitamin deficiencies? What can I ever eat at a restaurant ever again? How can I ever eat at anyone's house again? Am I never to consume anything I enjoy eating again?
My plan before I examined the diet closely was to strictly do the diet for a month and then start adding back potential triggers one at a time, consuming each one every day for a week (unless triggered, obvs) and then moving on to the next. But now I don't know what to do after seeing just how many foods I'll have to eliminate. The thought of eating like this, living like this for the rest of my life, makes me so full of despair. Like, I was upset about going gluten free, and it took me a while, but I got over that pretty quickly all things considered. I can't see getting over eating like this.
I will have to take all my food with me everywhere I go. I'm not forcing my family to eat this way. It's hard enough going gluten free and not cooking with citrus and tomatoes. This takes it too far. Almost all our spice blends, for example, have citrus in them. So it's going to be a lifetime of cooking my sad, dry chicken breast on its own or my pot of soup with no onions or tomatoes or whatever, separately from theirs. It's going to be a lot of me eating a bowl of cereal and some dry fucking salad leaves while everybody else gets to eat real food.
I am picking up the medicine today; I didn't get it Wednesday because nobody could tell me if it's gluten free, the internet was singularly unhelpful, and the manufacturer didn't call me back until today. So I have no idea what effect the medicine will have (although the doc did stress that the meds are in addition to the diet; they don't take the place of it).
The doctor acknowledged that not everyone is triggered by the same things, so it's possible I can eat some of the forbidden items on the list. I can eat like this for a month, but what if I start adding these foods back, and I really am triggered by lima beans or apples or salad dressing?
What should I do? Should I keep eating as I have been (no citrus, caffeine, tomatoes), maybe lay off the vinegary stuff a bit, and see if I'm okay doing that plus the meds? Or should I go the whole month strictly on the diet and then start adding back foods to know for sure what triggers me?
I ate some sambal olek right before Thanksgiving and I know it triggered me. I woke up the next morning with intense symptoms. But a week and a half later, I drank a few glasses of wine which seemed to have no effect. So IDK.
I'm just really, really upset. I've already had to give up so many things I love to eat. The idea that I pretty much have to give them all up and am resigned to eating just to stay alive rather than to enjoy myself at all is a really bitter pill to swallow. I'm sure I'm being overly melodramatic. After all the IC website did tell me I could make my own salad dressing by blending up cottage cheese with herbs. *gags and dies*
So, the doc does think I have interstitial cystitis, albeit a mild case. Okay, that's pretty much what I thought was going to happen. He told me I'd need to follow the IC diet (that's the main form of treatment), gave me a medicine to start taking, and told me I would only need a cystoscopy if the condition worsens or doesn't respond to treatment. So far, so good.
Then I get home and really start looking at the diet guidelines, and it's so much more restrictive than what I was finding online. I had pretty much resigned myself to not eating citrus, chocolate, caffeine, and carbonation. I miss those things, but I've been doing okay without them.
Here's the food list I was given:
( cut for length )When I saw this list, I really started losing my shit because between this and the celiac, what's left? Am I doomed to a lifetime of dry salad, dry meat, dry veg? No hint of brightness to my food ever? No fruit? How do people on this diet not get scurvy or extreme vitamin deficiencies? What can I ever eat at a restaurant ever again? How can I ever eat at anyone's house again? Am I never to consume anything I enjoy eating again?
My plan before I examined the diet closely was to strictly do the diet for a month and then start adding back potential triggers one at a time, consuming each one every day for a week (unless triggered, obvs) and then moving on to the next. But now I don't know what to do after seeing just how many foods I'll have to eliminate. The thought of eating like this, living like this for the rest of my life, makes me so full of despair. Like, I was upset about going gluten free, and it took me a while, but I got over that pretty quickly all things considered. I can't see getting over eating like this.
I will have to take all my food with me everywhere I go. I'm not forcing my family to eat this way. It's hard enough going gluten free and not cooking with citrus and tomatoes. This takes it too far. Almost all our spice blends, for example, have citrus in them. So it's going to be a lifetime of cooking my sad, dry chicken breast on its own or my pot of soup with no onions or tomatoes or whatever, separately from theirs. It's going to be a lot of me eating a bowl of cereal and some dry fucking salad leaves while everybody else gets to eat real food.
I am picking up the medicine today; I didn't get it Wednesday because nobody could tell me if it's gluten free, the internet was singularly unhelpful, and the manufacturer didn't call me back until today. So I have no idea what effect the medicine will have (although the doc did stress that the meds are in addition to the diet; they don't take the place of it).
The doctor acknowledged that not everyone is triggered by the same things, so it's possible I can eat some of the forbidden items on the list. I can eat like this for a month, but what if I start adding these foods back, and I really am triggered by lima beans or apples or salad dressing?
What should I do? Should I keep eating as I have been (no citrus, caffeine, tomatoes), maybe lay off the vinegary stuff a bit, and see if I'm okay doing that plus the meds? Or should I go the whole month strictly on the diet and then start adding back foods to know for sure what triggers me?
I ate some sambal olek right before Thanksgiving and I know it triggered me. I woke up the next morning with intense symptoms. But a week and a half later, I drank a few glasses of wine which seemed to have no effect. So IDK.
I'm just really, really upset. I've already had to give up so many things I love to eat. The idea that I pretty much have to give them all up and am resigned to eating just to stay alive rather than to enjoy myself at all is a really bitter pill to swallow. I'm sure I'm being overly melodramatic. After all the IC website did tell me I could make my own salad dressing by blending up cottage cheese with herbs. *gags and dies*
