Interstitial Cystitis???
crystalgraz
Posts: 10 Member
4 months ago all kinds of crazy things started happening and I thought it was a female issue so after seeing my GYN a billion times she referred me to a Urogynocologist and this lady is so amazing. I scored a 16 on a Puff test (questionnaire they do to determine if you need IC testing, I guess 15 means IC is possible). She did some urodynamic testing which she said she wants to see better, but it could be worse. She found evidence of oxidation in my bladder which she blamed my 20 + packet a day addiction to splenda ( don't judge me), so I got rid of splenda completely! Things were better for a few days and then that time of month rolled around and I am right back where I started. Pain, using the bathroom every 20 to 30 minutes all day long. I have another appointment coming up but I am just so frustrated.
I know IC can be controlled with diet, and I already found I can't eat strawberries or any artificial sweeteners, today I took some pyridium for the pain, lets see if it works. Anyone have any experience with IC? Mine seems to be diet and hormone triggered... My doc suggests doing food eliminations to see what is causing all this! No one I know has anything like this so I have no one to talk to about it, even though hubby is very supportive, he doesn't fully understand !
I know IC can be controlled with diet, and I already found I can't eat strawberries or any artificial sweeteners, today I took some pyridium for the pain, lets see if it works. Anyone have any experience with IC? Mine seems to be diet and hormone triggered... My doc suggests doing food eliminations to see what is causing all this! No one I know has anything like this so I have no one to talk to about it, even though hubby is very supportive, he doesn't fully understand !
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Cranberry juice
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Cranberry is in the list of top triggers because its so acidic.1
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alkaline 0 -
You might want to try something like this:
http://www.ic-network.com/forum/forum.php?s=b10312894fd3313fa83dda6ff40665700 -
Sorry, just googled it - you're right.
Seems to work though.0 -
I have it..Have had it for about 16 years. I don't eat consume tomatoes, coffee, or spicy foods, but I do eat chocolate occasionally. Do not drink Coffee if you do. My symptoms got so much better after I gave it up. I deal with this disease on a daily basis, so you just have to learn to cope with it. It's annoying and uncomfortable. I live a normal life otherwise, but I'm just in the bathroom more often than most people.0
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I was diagnosed with IC in August 2012. I cut out all acidic foods - most fruits, all carbonated beverages, many types of candy, juices, coffee, etc. After a few months of no symptoms, I gradually added things back in. You will never catch me drinking a glass of lemonade, but I'm able to eat salsa, or one clementine on occasion with no symptoms so long as I eat something else non-acidic with it. I can drink a cup of coffee each morning now. Since I changed my eating habits, I haven't had a single episode, and mine were cripping previously. I thought I had UTIs for years, but they were really IC episodes.
There is medication you can go on, but I chose to make diet changes first and never needed the medication, but mine isn't a serious case. Feel free to send me a FR if you want to talk more about it!0 -
I drink 2 cups of 1/2 caff coffee, and it doesn't seem to bother me My doc said 2 cups is my limit though! I used to drink at least 6
. However, I cannot tell right now because that time of the month is a HUGE trigger so things are rough this week anyway, I think I will start eliminating things after this!0 -
ya no what I think I might have this!!!0
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you think? lol you cant miss the symptoms of this, it took me over a month but I had to seek medical attention!!!0
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My cat has it (same as in people) and what was suggested for her was to manage stress. Stress is a huge trigger for symptoms, and the holiday season is very very stressful so you may want to ask about what you can do to manage it.0
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Awww poor kitty
And yes they mentioned stress can be a huge trigger. Sadly it sounds like every patient responds to different treatment, so its just a matter of finding what works... which is kind of adding to my stress!!! 0 -
Awww poor kitty And yes they mentioned stress can be a huge trigger. Sadly it sounds like every patient responds to different treatment, so its just a matter of finding what works... which is kind of adding to my stress!!!
You'll figure it out :flowerforyou:
And at least you're able to get to a bathroom with it.. she pees on the couch instead of the litter box when her symptoms are acting up >.<0 -
Awwww again I say, poor kitty!!!Awww poor kitty And yes they mentioned stress can be a huge trigger. Sadly it sounds like every patient responds to different treatment, so its just a matter of finding what works... which is kind of adding to my stress!!!
You'll figure it out :flowerforyou:
And at least you're able to get to a bathroom with it.. she pees on the couch instead of the litter box when her symptoms are acting up >.<
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DO NOT DRINK CRANBERRY JUICE!!! Years ago I kept having what I thought were UTIs, and no one could figure out what was wrong with me. I had horrible pelvic pain, blood in my urine, and sometimes what looked like pieces of flesh in my urine. I was in college and the stupid people at the clinic just kept giving me antibiotics, but finally when I was home on break a doctor told me there was no bacteria in my urine so it couldn't be a UTI. I was tested for a bajillion things - Celiac's, food allergies, endometriosis, etc.
Finally my gynecologist said it could be IC, so I saw a urogynecologist who performed a laparoscopy and cystoscopy and confirmed severe IC. The inside of my bladder was so damaged that he could see bleeding and breaking down of the walls. I was literally peeing out blood and lining from my bladder! It was so bad that I had developed Pelvic Floor Dysfunction and was having spasms and so much pain all the time. I couldn't be "intimate" with my boyfriend because it hurt too much, and even using a tampon was impossible. It really affects everything in the area!
They put me on Elmiron, which supposedly can help with rebuilding the bladder lining, and Prosed, which is for the pain (it turns your urine blue, haha). I also had weekly instillations of medication put into my bladder through a catheter. It was really hard at first, but finally I was able to figure out which foods trigger me. After a year I went off all medications and can control it completely through diet.
Here are foods that I CANNOT eat (but it's different for everyone)
- Coffee
- Red wine
- Tomatoes (this is a major trigger for me)
- Cherries
- Strawberries
- Anything cranberry
- Sodas
- Artificial sweeteners (try Stevia or Truvia or Agave nectar)
Doctors believe it's the acidity in foods like these that cause the breakdown of the bladder and the resulting pain. Interestingly, I can eat a grapefruit or a lemon with no problem, though. You really have to eliminate any food that you think could irritate you, then introduce them one at a time to see how you react. It seems like a lot of fruits are off limits due to their acidity, but blueberries are known to be great options for people with IC, and I'm fine with apples and bananas and avocados. (Seems like mostly the red fruits are no-nos for me, haha)
If you're having a bad flare, you need to find a way to balance your pH. Baking soda is perfect for this. My doctor recommended putting a teaspoon into a large glass of water and drinking that, but it's totally gross. I found this set where you can make your own pills (I guess people put herbs/etc in them), so I literally made baking soda pills and take one with a huge glass of water if I'm having pain. It is seriously a miracle worker.
Here are other things that can help with IC:
- Aloe pills (sounds odd, but look it up - there are even specific IC aloe pills)
- Corn silk tea - soothes the bladder, tastes pretty good!
- Eating any sort of alkaline food
Feel free to friend me if you have any questions or need someone to talk to. I know this can be so difficult and frustrating, especially because there is still so much that is unknown about IC and how to treat it (and there's no cure). Hang in there - once you get the hang of it, you'll feel much better!!
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Having to go to the bathroom so often and so urgently will also go down once you get the hang of things. When this all started for me, I was going about every 20-30 minutes and having to get up multiple times at night to go, but when the need to go hit me, I had to go IMMEDIATELY! It was impossible to go on long drives or be anywhere there wasn't a bathroom nearby. I was on my way home from work once when it hit me, and let's just say that I only made it to my front door (running) before disaster struck. Luckily, that only happened to me once and my roomies weren't home, but talk about embarrassing! Be sure to get on top of this before you become a leaky old lady like I was, haha!0
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I do not have IC but I have yeast always in my bladder same symptoms as yours. I find I can not eat spinach or almonds at all due to the oxalates. Look up a low oxalate diet there is a handy chart I googled at one point. I also found coconut oil helps me a lot not sure if it will do the same for you. But yes bladder issues can be control through diet I did not eat sugar for the longest time now that I am eating it again I can feel the effects. Oh also not sure with IC if you can do this but I start my mornings off with a shot of watered down lemon juice.0
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I have since found gluten to be a HUGE trigger for me. I am on day TWO of no gluten and today I have only used the bathroom 3 times since I woke up 8 hours ago, this is unheard of in my world. I am still having external and bladder pain, which my doc thinks may be caused from eggs... but I have to be off gluten for a week before I stop the eggs so we can be sure. This is so frustrating. At my apt yesterday she gave me some uribel samples. Also, she told me if I truly have IC if I drink 1/2 tsp baking soda in 4 oz water, the pain would subside. My pelvic pain went away but the pain when sitting ( I think she referred to this as vulvodynia) was still there so I am confused.0
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I have IC but have found no flare foods, and I tried cutting out all the "trigger foods", kept a food diary, tried low oxalate, but nothing seemed to help/hurt. Found out that my triggers are stress and hormonal. I am on Elmiron which helped tremendously as well as Elavil and Vistaril.0
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I have IC and used to have bad flare ups that lasted for days. Sooo painful. I've learned lots of water really helps and I keep AZO on me at all times in case I need it. There are some great herbal remedies that help. One of which has been great for me is Yerba mate. I also take a probiotic everyday. If you're having a bad flare up try baking soda mixed in water. It calms the pain quickly. Just don't do it top frequently as it has sodium. Good luck to you!0
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Giving this a bump to see if anyone is currently around with IC?0
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I have it I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now...... 0
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I have it I am still coming to terms with it. It hasn't been a good couple of years (broken toes, then broke my leg, then had ACDF neck surgery - in which that lead to the IC diagnosis). I was on MFP a few years back, and I am hoping to get back into the swing of fitness, just going to have a couple twists now......
If you don't mind my asking, how did neck surgery lead to an IC diagnosis?0 -
I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.0 -
I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.I was diagnosed with IC ten years ago. It took me about 2 years to find the right combination of treatments because while my bladder showed very little evidence of the disease, my symptoms were significant. Now, however, I rarely dwell on it -- there's a daily awareness of it and what I need to do to avoid a flare, but it doesn't keep me from living my life. After taking a fitness hiatus during those couple of years, I started running and then moved on to weight lifting and body building. I'm convinced that physical activity and weight management are critical to managing IC as much as the other treatments.
Until a few months ago, I strictly adhered to the IC diet. I cheat every now and again but always go back to the diet if I feel my symptoms beginning to flare. It's important to research the information out there, follow the diet and keep pushing to find the right treatment for you. This may include medication, an Interstim implant for the frequency/urgency, and/or physical therapy. It's a lifestyle change but one you can adapt to in time. I honestly don't feel like I'm losing out on anything at this point. Oh, and don't forget your water!
Let me also warn you to take the IC forums for what they are and not get too down. I made that mistake early on and lived in fear. Don't.
Appreciate your experience and I'm hearing others like it- that after the initial period of getting things under control, it can be much more manageable (though I know it doesn't work this way for everyone). You're right- the forums freaked me out at first!
One thing I'm trying to work out is exercise. I'm on MFP primarily to lose & control my weight and have come to rely on exercise a great deal. Vigorous exercise (I primarily do low impact walking/aerobic dvds at home, but many are tough) seems to aggravate my symptoms. Has anyone else experienced this & how do you handle it?0 -
amyrebeccah wrote: »This is a question I plan to ask my doctor, but I just want to run this past some of you. I don't have a lot of the symptoms, but I ran past IC when looking up the symptom of pelvic pain right AFTER the bladder is emptied (I also have urine that seems to reflect some of the reported symptoms). I also have endometriosis (adenomyosis). Does anyone here run into that issue or have both IC and endometriosis?
You might try the ic-network.com forums... you'll likely find a lot more experience on there. In my research of IC, the symptoms can take so many forms, I wouldn't rule anything out. It's also known as Pelvic Pain Syndrome, indicating it can be a much more pervasive problem than just the bladder.1 -
I take Dmannose to prevent or cure urinary tract infections - is what you have similar to that? Dmannose is the effective ingredient in cranberry but much more concentrated and effective and without all the acidity. Might want to ask your doctor. But take antibiotics if the infection doesn't go away.0
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If it is similar to urinary tract infection then also make sure to avoid refined sugar, sweeteners, alcohol, caffeine, and excessive carbs. Make sure you eat adequate protein daily and take a multivitamin- both of these help support your immube system. I have a feeling I used to get chronic infections due to being protein deficient plus a few mineral and vitamin deficiencies I had. I haven't really had one since getting my nutrition on track, but I used to get them chronically before.0
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courtneyfabulous wrote: »If it is similar to urinary tract infection then also make sure to avoid refined sugar, sweeteners, alcohol, caffeine, and excessive carbs. Make sure you eat adequate protein daily and take a multivitamin- both of these help support your immube system. I have a feeling I used to get chronic infections due to being protein deficient plus a few mineral and vitamin deficiencies I had. I haven't really had one since getting my nutrition on track, but I used to get them chronically before.
Always good to rule out actual infection, but just as an FYI, from my research into IC, it's more characteristic for there not to be infection present (although the symptoms often feel exactly like a UTI). However, it's interesting that you mention Dmannose, because I have a friend who has been naturally managing IC for some time and this is one of the things she recommends. Something to do with helping to coat the bladder so irritants don't stick? And diet is also the most critical element to managing IC.0
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