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Hello fellow strong and courageous people,
I wasn't really sure what category would be appropriate for this post, but I just wanted to share some things.
I had my first Elmiron instillation today, and I'm in a LOT of pain from it. I had to take tramadol again for the first time in months.
But this new pain made me realize that I've come pretty far symptom-wise from where I was in Jan/Feb of this year, and that as far as severity of IC symptoms go, I have been pretty fortunate to have regained as much normalcy in my life as I have.
At the height of my IC nightmare this year, I was bed-ridden, peeing every 15-20 mins, having constant excruciating burning pain through which I could not think or talk, difficulty urinating, having just a few drops at a time despite incredible urgency, etc (you all know just how bad it can be!!). But after about a month of Elavil, Tramadol at night, and a strict IC diet I was doing a little better. (I tried a whole bunch of other things during this time too, but I'm not sure if they helped.) By the following month (March) I was starting to leave my apartment again. In April, I was still in pain, felt like my bladder was always sore, and had to pee every 45-60 mins BUT that was enough of an improvement that I was able to travel to Italy and Austria before leaving Spain! It was exhausting and stressful to travel with IC, but at least I was able to do it.
Yesterday I went to the gym and did an hour-long Zumba class. How awesome is that?! Yes, I had to pee before, during and after the class, and I think all the jumping around made me feel a little worse last night, BUT it felt so amazingly good to be exercising and dancing! Then I felt good for at least an hour afterwards.
I have discovered in the last few months that my bladder pain increases when I begin a workout (and in yoga too), but that after the first 20 mins it seems to lessen as my body warms up and my brain is distracted by the exercise. I don't know if this could give anyone who feels like they can't exercise hope but I really have found that after the first exacerbation of pain, it drops off during the rest of the workout. I really feel like if it is at all possible for a person to exercise within the severity of their IC they should try to do so, and keep trying!
Food- I started the IC diet in February and have continued to follow it strictly. It didn't magically fix me, but when I think back on how horrible the IC was in Jan/Feb, I realize that it must be helping. In late May I saw an acupuncturist who insisted that I should go on a gluten and sugar free diet as well (to cut out all inflammatory and candida-feeding foods). I was furious! Insult to injury! But I've taken 10 rounds of antibiotics this year so I believe I could susceptible to a candida infection. I have not had some miraculous turn around within the last two months BUT I'm still doing my best to stick to this crazy diet! Here is how I am surviving:
-PESTO and HUMMMUS-My saviors!! Homemade pesto and hummus are the only two sauces that I know of that I can still have, but even before IC I adored them both. I've had to modify the recipes a bit, mostly omitting lemon juice. They're easy and fun to make- just add ingredients to taste and throw it all in a blender! Here's what I put in my pesto: basil and/or arugula (for "pesto di rucola"), pinenuts (sometimes almonds too), olive oil, raw garlic cloves, salt, and instead of parmesan or asiago (aged cheeses=bad) I put in a little fresh cheese, Mexican queso fresco or cotija. I make hummus with chickpeas, tahini, olive oil, garlic and a few black olives or slices of red bell pepper. My favorite recipe is brown rice pasta with pesto and shrimp.
-Coconut everything!! Unsweetened coconut milk, coconut meat and juice (from young coconuts), unsweetened coconut flakes for my cereal or a snack, and coconut juice for a refreshing treat (has some sugar but compared to carrot juice and pear juice, is much lower.)
-Grains-oatmeal, quinoa, brown rice and pastas/breads/crackers made from these things. We're supposed to avoid starchy things in general though, so I eat potatoes and corn sparingly.
-Dairy-We're supposed to avoid dairy, so I drink unsweetened coconut milk and almond milk for breakfast I try to avoid the brands with B12 added, but it's hard. Rice milk tends to have a lot more sugar than the other brands, so I avoid that too.
-Cheese- I can't give up any more cheeses! I eat fresh mozzarella, cotija or queso fresco.
-fruit- no fruit is really allowed on a sugar-free Candida diet, but luckily blueberries are actually quite low in sugar so I eat them. I'll still have a little pear or melon occasionally. Or if I'm feeling rebellious, I eat medjool dates. But fruit is literally the only "dessert" item I've eaten in two months.
-vegetables-are my new best friends. I eat a ton of dark leafy greens everyday- kale, watercress, spinach, arugula, broccoli, and cauliflower are my staples. Zucchini is good too. I'm supposed to avoid more sugary vegetables like sweet potatoes and peas. :-( Celery carrots cucumber and jicama are great snacks! I also seem to tolerate a little bit of red bell pepper and cooked onion. Oh yes, and avocados!!
-protein- I eat pinto and black beans, eggs, almonds, cashews and peanuts. I also eat fish, shellfish, chicken and occasionally lamb, beef and pork. I used to be a vegetarian and I just don't enjoy cooking mammals!! But I try to eat them for the protein and minerals.
-flavor- I add garlic to everything, and frequently throw in oregano, basil, thyme and rosemary. I seem to be able to tolerate a pinch of cumin and turmeric as well which is awesome.
When I started what I call my Crazy Diet (IC +Gluten-free+Sugar-free+ Candida diet) I was miserable. Hadn't I been deprived enough already?? But some people here on the forum gave me some encouragement and good tips on food that gave me hope, so my hope is that some of my diet tips can help if you are also trying to do an IC + Candida diet, and help you realize that you can still eat a lot of food despite the doubly-restrictive diet. I tell myself that eating a super healthy diet of fresh, natural, whole foods is a GOOD thing that is coming out of this IC experience. I have a few other recipes I could share if anyone is interested.
Ok, that was an epic post!! My best to everyone today!
I wasn't really sure what category would be appropriate for this post, but I just wanted to share some things.
I had my first Elmiron instillation today, and I'm in a LOT of pain from it. I had to take tramadol again for the first time in months.
But this new pain made me realize that I've come pretty far symptom-wise from where I was in Jan/Feb of this year, and that as far as severity of IC symptoms go, I have been pretty fortunate to have regained as much normalcy in my life as I have.
At the height of my IC nightmare this year, I was bed-ridden, peeing every 15-20 mins, having constant excruciating burning pain through which I could not think or talk, difficulty urinating, having just a few drops at a time despite incredible urgency, etc (you all know just how bad it can be!!). But after about a month of Elavil, Tramadol at night, and a strict IC diet I was doing a little better. (I tried a whole bunch of other things during this time too, but I'm not sure if they helped.) By the following month (March) I was starting to leave my apartment again. In April, I was still in pain, felt like my bladder was always sore, and had to pee every 45-60 mins BUT that was enough of an improvement that I was able to travel to Italy and Austria before leaving Spain! It was exhausting and stressful to travel with IC, but at least I was able to do it.
Yesterday I went to the gym and did an hour-long Zumba class. How awesome is that?! Yes, I had to pee before, during and after the class, and I think all the jumping around made me feel a little worse last night, BUT it felt so amazingly good to be exercising and dancing! Then I felt good for at least an hour afterwards.
I have discovered in the last few months that my bladder pain increases when I begin a workout (and in yoga too), but that after the first 20 mins it seems to lessen as my body warms up and my brain is distracted by the exercise. I don't know if this could give anyone who feels like they can't exercise hope but I really have found that after the first exacerbation of pain, it drops off during the rest of the workout. I really feel like if it is at all possible for a person to exercise within the severity of their IC they should try to do so, and keep trying!
Food- I started the IC diet in February and have continued to follow it strictly. It didn't magically fix me, but when I think back on how horrible the IC was in Jan/Feb, I realize that it must be helping. In late May I saw an acupuncturist who insisted that I should go on a gluten and sugar free diet as well (to cut out all inflammatory and candida-feeding foods). I was furious! Insult to injury! But I've taken 10 rounds of antibiotics this year so I believe I could susceptible to a candida infection. I have not had some miraculous turn around within the last two months BUT I'm still doing my best to stick to this crazy diet! Here is how I am surviving:
-PESTO and HUMMMUS-My saviors!! Homemade pesto and hummus are the only two sauces that I know of that I can still have, but even before IC I adored them both. I've had to modify the recipes a bit, mostly omitting lemon juice. They're easy and fun to make- just add ingredients to taste and throw it all in a blender! Here's what I put in my pesto: basil and/or arugula (for "pesto di rucola"), pinenuts (sometimes almonds too), olive oil, raw garlic cloves, salt, and instead of parmesan or asiago (aged cheeses=bad) I put in a little fresh cheese, Mexican queso fresco or cotija. I make hummus with chickpeas, tahini, olive oil, garlic and a few black olives or slices of red bell pepper. My favorite recipe is brown rice pasta with pesto and shrimp.
-Coconut everything!! Unsweetened coconut milk, coconut meat and juice (from young coconuts), unsweetened coconut flakes for my cereal or a snack, and coconut juice for a refreshing treat (has some sugar but compared to carrot juice and pear juice, is much lower.)
-Grains-oatmeal, quinoa, brown rice and pastas/breads/crackers made from these things. We're supposed to avoid starchy things in general though, so I eat potatoes and corn sparingly.
-Dairy-We're supposed to avoid dairy, so I drink unsweetened coconut milk and almond milk for breakfast I try to avoid the brands with B12 added, but it's hard. Rice milk tends to have a lot more sugar than the other brands, so I avoid that too.
-Cheese- I can't give up any more cheeses! I eat fresh mozzarella, cotija or queso fresco.
-fruit- no fruit is really allowed on a sugar-free Candida diet, but luckily blueberries are actually quite low in sugar so I eat them. I'll still have a little pear or melon occasionally. Or if I'm feeling rebellious, I eat medjool dates. But fruit is literally the only "dessert" item I've eaten in two months.
-vegetables-are my new best friends. I eat a ton of dark leafy greens everyday- kale, watercress, spinach, arugula, broccoli, and cauliflower are my staples. Zucchini is good too. I'm supposed to avoid more sugary vegetables like sweet potatoes and peas. :-( Celery carrots cucumber and jicama are great snacks! I also seem to tolerate a little bit of red bell pepper and cooked onion. Oh yes, and avocados!!
-protein- I eat pinto and black beans, eggs, almonds, cashews and peanuts. I also eat fish, shellfish, chicken and occasionally lamb, beef and pork. I used to be a vegetarian and I just don't enjoy cooking mammals!! But I try to eat them for the protein and minerals.
-flavor- I add garlic to everything, and frequently throw in oregano, basil, thyme and rosemary. I seem to be able to tolerate a pinch of cumin and turmeric as well which is awesome.
When I started what I call my Crazy Diet (IC +Gluten-free+Sugar-free+ Candida diet) I was miserable. Hadn't I been deprived enough already?? But some people here on the forum gave me some encouragement and good tips on food that gave me hope, so my hope is that some of my diet tips can help if you are also trying to do an IC + Candida diet, and help you realize that you can still eat a lot of food despite the doubly-restrictive diet. I tell myself that eating a super healthy diet of fresh, natural, whole foods is a GOOD thing that is coming out of this IC experience. I have a few other recipes I could share if anyone is interested.
Ok, that was an epic post!! My best to everyone today!
& have gotten by 2 days of no sugar nor wheat. I was wondering, what about Pero? It is gluten (barley) but is that ok? I wasn't sure if it was ok to drink one cup in the morning or not so I am strictly going by only peppermint tea (very weak & not often). I am wondering, too...really no milk (ok, if this is true, I am not really "on" this diet fully) because I have had some raw milk that we get. I hope I do not have to give it up, too. *waaa*
,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
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