Anyone deal with Interstitial Cystitis?

[LilyWDW]

So, my doctor and I are getting me on track to possibly have to deal with a diagnosis of IC. I am having a pretty bad flare right now though I have UTA capsules that help. The hardest thing I am finding is the diet! Some of my favorites are on the "caution" list. It stinks!

Anyone else having to deal with this condition? Any tips, tricks, recipes, resources? Thanks!

 

[Carina]

I was diagnosed a few years ago
It's the liquids that cause flare-ups for me food isn't a problem thankfully.

Also I think mine is pretty mild compared with some people although it can feel as bad as a bad bladder infection, I usually describe it as a bad sunburn feeling. If I really think about it, there is always a 'bit' of feeling there but I try and ignore it as much as I can and I really pay attention to trying to fight the urgency as that seems to become a vicious circle. (Do I 'really' have to go or is it just the IC causing a bit of discomfort, as I think going to much just makes people need to go more) I learned pretty quick to notice the difference in the feeling.

When you have a flare up eliminate anything that triggers it.

The rest of the time MODERATION is the key. For example I love Orange Juice. So I just buy the little juice boxes and make sure I only have one every few days ( at most)

I try and drink more water than anything else, as that seems to keep things under control.

I don't know if Milk is an issue as I am also Lactose Intolerant ( lol healthy in all other aspects )

I am not a coffee drinker
I do still have one cup of tea most days, but I drink my tea VERY weak, or as my best friend says "just take the tea bag and wave it over the mug once or twice"

Water

Did I mention water

It's all about WATER! Learn to love it!

 

[LilyWDW]

I live with a glass of water beside me at all times!

I seem to flare up with the "classic" items. Caffeine, alcohol, tomatoes, citrus, artificial sweeteners, acidic fruits, and spicy stuff. Been staying away from most of that for years since I had my first issue (back in like 2006). Then all my symptoms went away except for 1-2 day flares every so often until this past June. I got a UTI and since have had constant pressure and discomfort. Same thing happened before. Right now I am on UTA capsules to help which at least allows me to live a somewhat normal life.

My GP is setting me up on a referral for a urologist. I am also starting counseling sessions next week since stress and anxiety also cause me problems.

I am sort of wondering if the UTI caused the original flare up and now I am just sensitive. Hopefully I can go back into remission like before.

 

[Robbi]

My symptoms are only extreme pain I always say that labor pains were a walk in the park in comparison. Sometimes it's the only symptom of a concurrent bladder infection but not always. I never have to "go" more frequently. My doctor has not prescribed meds or a special diet. I have noticed that more stress than usual in my life will often precipitate an attack. I've had it for so long that I will recognize a twinge and start doing meditative breathing or yoga to relax. It really helps. Good luck to you.

 

[ilovepcot]

Newly diagnosed with this. Anxious to read all your posts on this issue.

 

[mischief32]

I was just diagnosed in May. I was having a flare up at the time. I had been going to my gyn for years thinking that was the problem. I finally went to the urologist and they knew what I had rigt away. I did have to have my bladder scoped for the complete diagnois. My flare up items are coffee, artificial sweetners so far. Maybe spicey foods, which, i love. I do only drink coffee every now and then. I have the pills also for flare up. I do not have the urgency issue either. Had a kidney stone resently and was referred to another urologist in thw city I work it and she is not sure about that diagnosis. She thinks my bladder may just be sensitive. I stopped OJ and try to avoid spicy foods. I do not appear to have a bad case. The list of foods to avoid was 12 pages long. You just need to try things to see what bothers you. My bladder feels pretty good now. It did not like kidney stone and I took my pills for a few days after I passed mt stone. I am glad to have a diagnosis after 12 years of issues.

 

[LilyWDW]

I got the IC diet food list off of the IC Association site. Staying about 95% on the "bladder friendly" column with a couple of things off the "try it" column that have not historically bothered me. For example, they warn against yogurt ("try it" column) but it doesn't seem to give me any issues. What stinks is that there are a few things that I am staying away from that were diet staples for me (hot and iced tea, grapes, pineapple, strawberries, and a lot of condiments).

I will get my referral Tuesday. Just praying the appointment is pretty quick. This has really made my life difficult and the constant issues have made my depression and anxiety worse. Before I got the UTA capsules there were days I was curled up in pain and tears and just wanting it to end.

 

[NFLDERS]

I got the IC diet food list off of the IC Association site. Staying about 95% on the "bladder friendly" column with a couple of things off the "try it" column that have not historically bothered me. For example, they warn against yogurt ("try it" column) but it doesn't seem to give me any issues. What stinks is that there are a few things that I am staying away from that were diet staples for me (hot and iced tea, grapes, pineapple, strawberries, and a lot of condiments).

I will get my referral Tuesday. Just praying the appointment is pretty quick. This has really made my life difficult and the constant issues have made my depression and anxiety worse. Before I got the UTA capsules there were days I was curled up in pain and tears and just wanting it to end.

This is so me! I've gone through a barrage of tests. Everything negative. Recently (lastweek) seems so long ago now I had the HIDA test done to more conclusively rule out Gallbladder issues. The results probably next wk.

I'm scheduled to see an Urologist mid Sept. I'm so relieved OP posted this thread. Thanks OP.

 

[NFLDERS]

I got the IC diet food list off of the IC Association site. Staying about 95% on the "bladder friendly" column with a couple of things off the "try it" column that have not historically bothered me. For example, they warn against yogurt ("try it" column) but it doesn't seem to give me any issues. What stinks is that there are a few things that I am staying away from that were diet staples for me (hot and iced tea, grapes, pineapple, strawberries, and a lot of condiments).

I will get my referral Tuesday. Just praying the appointment is pretty quick. This has really made my life difficult and the constant issues have made my depression and anxiety worse. Before I got the UTA capsules there were days I was curled up in pain and tears and just wanting it to end.

This is so me! I've gone through a barrage of tests. Everything negative. Recently (lastweek) seems so long ago now I had the HIDA test done to more conclusively rule out Gallbladder issues. The results probably next wk.

I'm scheduled to see an Urologist mid Sept. I'm so relieved OP posted this thread. Thanks OP.

 

[LilyWDW]

This is so me! I've gone through a barrage of tests. Everything negative. Recently (lastweek) seems so long ago now I had the HIDA test done to more conclusively rule out Gallbladder issues. The results probably next wk.

I'm scheduled to see an Urologist mid Sept. I'm so relieved OP posted this thread. Thanks OP.

I hope you find out what is happening to you! Not know is most likely the hardest part of it all. WHY am I in pain? Why do I always have bladder pressure and discomfort? My life had come to a screeching halt until I found the UTA capsules. Now I can at least run errands and go shopping. I still make sure I know where all the bathrooms are though!

My GP said she could do an ultrasound but that it was better just to get me to a urologist as soon as possible due to the symptoms. Most likely they will want to do other tests anyway.

 

[LilyWDW]

Oh, and I am craving a burger and fries today so bad. But I am on a "no eating out" diet due to possible allergies AND the IC since I can't control ingredients. Tonight I am having steak hash and eggs so hopefully that will help with the craving! At least I will have the meat and potatoes...

 

[mhsjax]

Do you guys have the "burning" when you go, like you do with a UTI? I seen to have urgency and also pain like I have to go real bad, but no burning when I do go. I t also seems that when I sit it create more pressure on my bladder, do any of you experience this?

 

[NFLDERS]

LilyWDW:. Just checked the calendar Urologist isn't until mid Oct. Ugg! This has been ongoing since March.

 

[NFLDERS]

Do you guys have the "burning" when you go, like you do with a UTI? I seen to have urgency and also pain like I have to go real bad, but no burning when I do go. I t also seems that when I sit it create
more pressure on my bladder, do any of you experience this?

It's been determined I do not have an UTI. ( No burning) I've had a really bad one once in my life so I believe they are right with a negative diagnosis for UTI. However, I do have trace amts of blood in urine. Apparently not enough for stone formation. Ultrasound in March confirmed no Gallstones. My urgency is during the night.

 

[LilyWDW]

Do you guys have the "burning" when you go, like you do with a UTI? I seen to have urgency and also pain like I have to go real bad, but no burning when I do go. I t also seems that when I sit it create more pressure on my bladder, do any of you experience this?

Only if I "hold it" too long. Otherwise what you describe is exactly like what I have. Urgency, pressure, and pain. Sitting does make it worse as I think it puts additional pressure on the bladder. I also have issues if I am having gas or other digestive issues or during "that time" of the month. I get a lot of relief from walking and often will just go to the mall or walmart for that reason!

I actually seem to be pretty lucky. The UTA capsules help and I go about every 2 hours during the day and then 2-3 times at night. Compared to many of the stories I have read, that is pretty mild.

 

[mhsjax]

It's been determined I do not have an UTI. ( No burning) I've had a really bad one once in my life so I believe they are right with a negative diagnosis for UTI. However, I do have trace amts of blood in urine. Apparently not enough for stone formation. Ultrasound in March confirmed no Gallstones. My urgency is during the night.

I don't have burning either, and nothing in urine what so ever. And yep My urgency seems to be at night, in the am, things are much better. Just seem to have one very angry bladder.

 

[LilyWDW]

It's been determined I do not have an UTI. ( No burning) I've had a really bad one once in my life so I believe they are right with a negative diagnosis for UTI. However, I do have trace amts of blood in urine. Apparently not enough for stone formation. Ultrasound in March confirmed no Gallstones. My urgency is during the night.

I had a UTI in late June and early July. Took two rounds of antibiotics to clear up before I got a negative culture. I DO have reoccurant UTIs that seem to come and go in streaks. I also have trace blood in my urine.

 

[mhsjax]

Only if I "hold it" too long. Otherwise what you describe is exactly like what I have. Urgency, pressure, and pain. Sitting does make it worse as I think it puts additional pressure on the bladder. I also have issues if I am having gas or other digestive issues or during "that time" of the month. I get a lot of relief from walking and often will just go to the mall or walmart for that reason!

I actually seem to be pretty lucky. The UTA capsules help and I go about every 2 hours during the day and then 2-3 times at night. Compared to many of the stories I have read, that is pretty mild.

Yep, that is me exactly. I don't have "that time" any more, but if I am gassy, sorry if TMI, it does get worse. I drank way too many diet cokes yesterday, I thought I would die last night.

 

[daughter_of_amid_chaos]

I was given this diagnosis by a urogynecologist after experiencing a change toward heavy, painful periods and period like pain and cramping every day all month long. My PCP did an ultrasound and a CT scan then sent me to a gynecologist believing I had endometriosis. The gynecologist didn't think it was endometriosis but thought it was my bladder so sent me to the urogynecologist who immediately believed this was my problem. The pain is my only symptom. During a flare, it seems to get worse before, during, and after urination but I have no symptoms of urgency or increase in frequency. Sometimes when I am sitting though, I have a sensation in my bladder but it never leads to anything.

I have not been put on a limited diet because I already have a restricted diet and they don't want to take any more food options away. I have been put on Amitriptyline which seems to have helped but I am still questioning the diagnosis based on research I have done.

 

[NFLDERS]

Yep, that is me exactly. I don't have "that time" any more, but if I am gassy, sorry if TMI, it does get worse. I drank way too many diet cokes yesterday, I thought I would die last night.

My downfall is grapes. I have been grabbing gasx for relief if I need to. Family gatherings (lots of food) do me in.

I've wondered about *Listeriosis, (I have not looked into it as yet). We have had a problem with one of our food processors and the *bacterium in our foods here. I've noticed I have a problem with pork products.