Determination
12-29-2007, 03:44 AM
I am so thankful to have found this board. I have been suffering so much!
My story:
I am 46, with a healthy daughter. Way back when I was 21 I developed a bad bladder/kidney infection that I did not get treated. I didn't know what it was, was a bit embarrassed at having pain when I pee, and finally was dragged to the emergency room with a high fever and severe infections. After that I found I had to 'go' alot. I became a big health food fan, and started taking large amounts of powdered ascorbic acid in water daily -- 5000 grms a day or so. A huge amount! I did this for quite some time, and developed painful bladder symptoms. My doc suggested that I might have Interstitial Cystitis -- very new at the time. Pamela Sue Martin had just quit Dynasty out of her constant agony from IC. Her Doctor, Dr. Larrian Gillespie, opened a very high-end clinic in Beverly Hills and published the first book about IC that I'd ever seen. I lived in L.A., but Dr. Larrian's practice was very snooty, very expensive, and did NOT accept insurance. They didn't have to. There was no way I could afford to see her.
So I just stopped the vitamin c, modified my diet a bit, and took a teaspoon of baking soda in water everytime I had a flare-up. It got better and worse over the years, never debilitating, I just figured it was just me, how I was built, that I always had to go to the bathroom, even every few hours through the night. I didn't have much pain.
Ten years ago I was diagnosed with chronic kidney stones -- every sibling in my large family has them, we have a congenital condition in which our filtering system in our kidneys is smaller than average, and stones tend to collect. I always pass them without surgery. It's no biggie, nothing dangerous. Just inconvenient. As a result, I'm on first name basis with my urologist.
This last summer I heard about this great diet protocol that involves resetting one's metabolism. It's been in and out of the news for decades. I was able to lose 37 lbs in 1 1/2 months, with absolutely no ill health or hunger. I've kept the weight off effortlessly for a few months now. That's a whole 'nother story, it really is a miracle. But not for IC folks, as it puts you into an extreme case of ketosis.
About 3 or so weeks into the protocol I began to have what I thought was UTI pain. So my doc called in a script for Cipro. I began to feel like I was passing stones, so I went in to see my doc, he tested my urine -- no infection, no blood. So, usual routine, he gave me pain meds and I exercised and drank lots of water to dislodge the stone. Except. The pain didn't pass. I decided to temporarily stop the weightloss protocol, and my bladder stopped hurting.
Still thinking it had been stones, I started the program again. This time within 2 weeks I began to have severe bladder pain. I confessed to my doctor that I had been doing a diet that puts you into ketosis, and he nearly hit the roof! He confirmed that this was most likely the cause of my extreme pain, & made me promise to quit immediately. Again, no infection or blood (a sign of stones) showed up in my urine tests.
It's been a bit over a month, and I am still in excruciating pain. Vicodin takes the edge off a bit. I try not to take it if I'm not desparate, but sometimes when I'm in so much pain I can't think straight, I can't function, and I have to take one. I finally accepted that this is just not going to go away by stopping ketosis. As I read somewhere -- here, I think -- injury has been done to my bladder, and it needs time to heal. I knew I should not drink alcohol, someone said that vodka may be OK, so every night I was diving into martinis trying to escape the pain (not usual behavior for me). I also like really strong coffee (espresso strength, big steaming mugs) twice a day.
I have been fighting accepting that this is a real concern for me, that it's not just going to go away. But, enough is enough. I ordered and received my Cystoprotek, Desert Harvest Aloe caplets; still waiting for my Prelief. I pulled out my Claritan antihistamine from the cabinet, and put away all my bottles of multivitamins.
I made up a huge list of foods/substances to avoid, and stuck it on my fridge -- along with a list of what I could eat. Today is my first day without coffee -- and boy! Am I sleepy! But I can do it.
I am hoping that since this came on so quickly it will heal somewhat quickly. I know, I'm fooling myself. I'm just praying to get over this constant pain soon.
Any advice or suggestuins would be greatly apppreciated!
My story:
I am 46, with a healthy daughter. Way back when I was 21 I developed a bad bladder/kidney infection that I did not get treated. I didn't know what it was, was a bit embarrassed at having pain when I pee, and finally was dragged to the emergency room with a high fever and severe infections. After that I found I had to 'go' alot. I became a big health food fan, and started taking large amounts of powdered ascorbic acid in water daily -- 5000 grms a day or so. A huge amount! I did this for quite some time, and developed painful bladder symptoms. My doc suggested that I might have Interstitial Cystitis -- very new at the time. Pamela Sue Martin had just quit Dynasty out of her constant agony from IC. Her Doctor, Dr. Larrian Gillespie, opened a very high-end clinic in Beverly Hills and published the first book about IC that I'd ever seen. I lived in L.A., but Dr. Larrian's practice was very snooty, very expensive, and did NOT accept insurance. They didn't have to. There was no way I could afford to see her.
So I just stopped the vitamin c, modified my diet a bit, and took a teaspoon of baking soda in water everytime I had a flare-up. It got better and worse over the years, never debilitating, I just figured it was just me, how I was built, that I always had to go to the bathroom, even every few hours through the night. I didn't have much pain.
Ten years ago I was diagnosed with chronic kidney stones -- every sibling in my large family has them, we have a congenital condition in which our filtering system in our kidneys is smaller than average, and stones tend to collect. I always pass them without surgery. It's no biggie, nothing dangerous. Just inconvenient. As a result, I'm on first name basis with my urologist.
This last summer I heard about this great diet protocol that involves resetting one's metabolism. It's been in and out of the news for decades. I was able to lose 37 lbs in 1 1/2 months, with absolutely no ill health or hunger. I've kept the weight off effortlessly for a few months now. That's a whole 'nother story, it really is a miracle. But not for IC folks, as it puts you into an extreme case of ketosis.
About 3 or so weeks into the protocol I began to have what I thought was UTI pain. So my doc called in a script for Cipro. I began to feel like I was passing stones, so I went in to see my doc, he tested my urine -- no infection, no blood. So, usual routine, he gave me pain meds and I exercised and drank lots of water to dislodge the stone. Except. The pain didn't pass. I decided to temporarily stop the weightloss protocol, and my bladder stopped hurting.
Still thinking it had been stones, I started the program again. This time within 2 weeks I began to have severe bladder pain. I confessed to my doctor that I had been doing a diet that puts you into ketosis, and he nearly hit the roof! He confirmed that this was most likely the cause of my extreme pain, & made me promise to quit immediately. Again, no infection or blood (a sign of stones) showed up in my urine tests.
It's been a bit over a month, and I am still in excruciating pain. Vicodin takes the edge off a bit. I try not to take it if I'm not desparate, but sometimes when I'm in so much pain I can't think straight, I can't function, and I have to take one. I finally accepted that this is just not going to go away by stopping ketosis. As I read somewhere -- here, I think -- injury has been done to my bladder, and it needs time to heal. I knew I should not drink alcohol, someone said that vodka may be OK, so every night I was diving into martinis trying to escape the pain (not usual behavior for me). I also like really strong coffee (espresso strength, big steaming mugs) twice a day.
I have been fighting accepting that this is a real concern for me, that it's not just going to go away. But, enough is enough. I ordered and received my Cystoprotek, Desert Harvest Aloe caplets; still waiting for my Prelief. I pulled out my Claritan antihistamine from the cabinet, and put away all my bottles of multivitamins.
I made up a huge list of foods/substances to avoid, and stuck it on my fridge -- along with a list of what I could eat. Today is my first day without coffee -- and boy! Am I sleepy! But I can do it.
I am hoping that since this came on so quickly it will heal somewhat quickly. I know, I'm fooling myself. I'm just praying to get over this constant pain soon.
Any advice or suggestuins would be greatly apppreciated!