Is my IC like yours? Help....

[poodle28]

Hi,

My name is Lisa and I suffer from IC. I am so happy that this website and these forums exist. Without it, I would feel so lost. Anyway, I just want to introduce myself and share my story, so that I can find other people like me who can help me. I wonder if anyone else out there has the same type of IC symptoms that I do.

My main problem is frequency (after I urinate, I am no longer in pain...but then the pain comes back...so I pee again...all.day.long). My frequency is absurd (see odd contradiction under this paragraph). If ranges throughout the day, depending on how much I have recently drunk (I only drink water and peppermint tea). A good hour for me is 2 or 3 times in one hour. A bad hour for me can be 10-15 times in an hour. It averages from 3-8 times/hour everyday, some hours being worse than others. I sometimes pee every 5 minutes, sometimes every 2 minutes, or every 10-20 minutes, sometimes if I haven't drunk anything for a while and I am sitting down, I can not pee for like 40 minutes. I also get "jumpy nerves" and bladder spasms, which cause me to need the bathroom. Sometimes the jumpy feeling of my nerves is in my thighs too...occasionally my feet and hands fall asleep if I'm in a movie (I get up 3-5 times in a movie, 2 times is really good...this is considering that I go before and after the movie as well generally); not sure if that's related. It's been like this for the past year and 5 months. So far, I've been on elmiron 400 mg for 10 months, heparin-lydo installations almost daily for the past 3-4 months, 10 mg elavil for the past month, (tried attarax, made me feel like a zombie so quit), and I've cut out IC toxic drinks (and am still trying to be stricter about the diet...although I don't really have much of an excuse on that one). I'm also on prozac for anxiety (hmm...I wonder why??), which I hope isn't hurting my IC (I know the anxiety sure is...)

The strange thing is, when I fall asleep, once I am sleeping I will only wake up to void if prompted to by being waken up by noise, or once every 4-6 hours...sometimes I can sleep through the entire night. I get up several times before I've actually fallen asleep though. If i don't void upon having the urge to, I feel uncomfortable...and the discomfort can range from a very uncomfortable feeling of pressure, to an intense feeling of pain that is unbearable...it usually gets to this point if I cannot void right away (I cannot wait for more than a few minutes).

I also have urgency, due to the fact that when urine is in my bladder, it's either very uncomfortable or downright painful.

If you are like me in your symptoms, what has helped you? I know we're all different...but I wonder if I apply the same remedies to myself that people with similar symptoms to me have, it would be more of a help? It's at least worth a try to me.

I have tried wearing pads and depends, but my muscles wouldn't relax enough for me to be able to void in them, and I hated the idea anyway. Not sure if this was due to PFD, not liking the idea of it, or both. I am toying with the idea of wearing an indwelling catheter with a pouch attached to my leg under my clothes so that I can function better and be able to hold down a job easier with my extreme frequency. Has anyone tried this before? Is it safe? I'm afraid that if my bladder gets used to never having urine in it, it won't be able to hold any urine at all if I stopped using the indwelling cathater. I wouldn't want to use it when I'm not at work, because I'd want to see if the meds are actually helping my bladder become somewhat functioning again. I'm also afraid of urethral damage if I move suddenly or something like that. I wonder why this isn't a popular method of coping with IC? Is it because it's dangerous/has long-term complications, or because most IC'ers don't have frequency as badly as me?


Thanks,
Lisa =)

[nineteenwinters]

Hi! Yes your frequency without 'pain's is identical to mine. Everything from the frequency to the urgency. Only I was not able to sleep more than like 10 minutes when I would pass out. I too tried depends and like you that didn't work because A) I was lying down and B) our adult bodies are trained not to go like that. What works the best for me when it's really bad is to take pain pills. I don't know why but taking those (both Hydocordone and Nucynta) quell both the frequency and urgency. Since it is only my second month I think most of my drugs haven't kicked in yet. (IE Elmiron, Vesicare). I don't notice the Elavil and Allegra working or not working yet. The Pyridium helped a little but thaf was only after my Cysto. So right now the biggest aids are the Nucynta and the diet. But the diet only works when you are 100% commited to it. I tried a modified IC diet before I got my diagnosis and doing it 80% offered me NO help whatsoever.

Best of luck to you!

[poodle28]

Hi,

thanks for writing me back. =) i will check out those pain meds, thank you. =) have you ever tried prelief? if i took prelief, would i be able to have tomato sauce and certain forbidden fruits..? i miss good ol fashioned pizza. =( the diet is extremely hard for me to stick to. what do u eat? poor girl. =( the IC diet is rather limiting. i need to start researching recipes. i just discovered some delicious ic-friendly ravioli i'm gonna try w/ olive oil and some parm (i know thats bad, but not as bad as tomoto sauce).

thanks,
lisa =)

[poodle28]

to nineteenwinters

also, do you get bladder spasms/jumpy nerves? i forgot to mention (added in editing) that i get bladder spasms which make me need the bathroom too.

thanks,
lisa =)

[penneyjo]

I agree about the diet, it will only work if you give it 100%. The diet is not "rather" limited, it is "extremely" limiting. I thought I would go crazy when I started it. I too love pizza and have started having it will an garlic oil base (sauce) or pesto. I think you will find you don't notice that much difference, as there is usually not so much tomato sauce on pizza anyway. Restaurants are happy to do this and it's easy to do at home. Give it a try, I think you will be pleasantly surprised. Good luck.

[meResque]

Good morning!

The two things that help me most with frequency are two things you don't want to try. Sticking to the diet 100% (although I don't have to anymore) and Atarax. When my allergies flare, my bladder flares. Atarax is a godsend.

I did the diet strictly for about 6 months before I started thinking about trying new things. I needed time to get my bladder calmed down. It was in a perpetual state of freak out! These days, I can cheat with Prelief quite a bit (lovely large glass of wine last night, LOL) and have no repurcussions. I haven't tried tomato sauce yet, and I probably won't, although I do miss it. Pizza Hut makes a great Alfredo sauce pizza.

Oh, and I've also never gotten up to pee at night, unless I've been pregnant. I can be flaring right before bed, but then don't feel it all night long. Very strange! I think if you stick to your meds and the diet for a while, you'll start to feel a lot better. I barely think about my bladder these days.

[nineteenwinters]

Unless I am in a flare I do not use Prelief every day. I only use Prelief before trying something new. I used it before I had my small bit of sour cream or before I had a plain cheeseburger from McDonald's etc. I am still mainly one the 'good' side of the diet list with about 3 things on the 'try it' side. NOTHING on the caution side.

Prelief is not a miracle drug. If you prone to having flares eating a tomato sauce or drinking a soda Prelief will not stop you from flaring at those. It MAY allow you to have a VERY small quantity or lessen the flare a little but your best bet is going to be staying away from those food altogether. Especially the hardcore no-nos like vinegar, carbonation, caffeine, tomatoes, and chocolate.

Some people find that taking Prelief during a flare (along or without Tums) helps to calm it down somewhat. When I flare I will take Prelief before everything I eat or drink just in case.

Since it's 'new' to you your bladder is probably not recovered enough to begin trying those caution foods without experiencing a flare. It's best to stick to the diet for good while and give it some time to heal (with or without drugs). Then later you can experiment with caution foods and see what your main no-nos are. Even in 'remission' most people still cannot eat at least a few of the no-no list foods or very little of them.

I eat a lot of crappy foods right now. Sorry there is no way I can put the diet in a positive light. I HATE it. It's all about willpower and how much you hate your flares enough to stick to it. I eat a lot of chicken and rice and noodles and oatmeal and potatoes (hey I can still have french fries) and avocado and yellow bell peppers and garlic for flavor. It's a boring diet for sure but it's working. Also for a chocolate craving I make things with Carob and to me it tastes totally like chocolate. The hardest part of the diet for me is the drink selections. But again it's helping me stay away from flares so it's a willpower thing again. You WILL NOT be harming your body going without soda. You WILL if you have a soda. I think like that.

Trust me when I tell you I get how extremely hard and unfair it is. 2 months ago I was able to eat and drink whatever I wanted and now I am looking at a lifetime of diet restriction. It does suck. And there are plenty of times I am so very angry and mad because it is unfair.

The bladder spasms I did get. Especially at night. Those were awful things. As soon as they would 'hit' my bladder would seem to fill up with urine right then and there and I would have to go to the bathroom each time. The Pyridium is said to help a little with that. Also people try muscle relaxants sometimes. For me the diet is what keeps the spasms at bay. Like I have literally 1 in a month because of the diet. It has to be a 100% commitment though. While you might be tempted to cheat and drink a half of a soda or eat some spaghetti sauce even just a little can send you right back to where you were. Not even just for a few hours or a day but weeks. There are a few people who seem to me in the minority as far as they don't notice the diet helps but all I have seen had some pain in there not just frequency. I don't know if that correlates or not.

The best thing you can do is keep looking up info on it and ask yourself if having no-no foods and flares are something you can handle or if you'd rather be flare free and living on some boring diet. For me, the flares destroyed me so much I am sticking with the diet. When I want to have a Red Bull I think back to the day I thought I was going to die from exhaustion and ended up in the ER. Oh OK, I guess water won't be the end of the world. (And the diet is in general pretty healthy so it has that going for it too.)

Best of luck in whatever decisions you make!

[Jadia]

I have tried wearing pads and depends, but my muscles wouldn't relax enough for me to be able to void in them, and I hated the idea anyway. Not sure if this was due to PFD, not liking the idea of it, or both. I am toying with the idea of wearing an indwelling catheter with a pouch attached to my leg under my clothes so that I can function better and be able to hold down a job easier with my extreme frequency. Has anyone tried this before? Is it safe? I'm afraid that if my bladder gets used to never having urine in it, it won't be able to hold any urine at all if I stopped using the indwelling cathater. I wouldn't want to use it when I'm not at work, because I'd want to see if the meds are actually helping my bladder become somewhat functioning again. I'm also afraid of urethral damage if I move suddenly or something like that. I wonder why this isn't a popular method of coping with IC? Is it because it's dangerous/has long-term complications, or because most IC'ers don't have frequency as badly as me?


Thanks,
Lisa =)

Hi Lisa, welcome

While I do at times have extreme urgency, I can't even consider a catheter as a viable option. I have extreme sensations in my urethra from the IC. Many of us that have the urethra sensations like this are traumatized at the very idea of having a catheter in even for a split second, much less as a more permanent solution. I personally don't allow any catheter to be used on myself unless I am under general anesthesia the pain is so severe. With my recent pregnancy I started having some issues where I thought I was desperate enough to attempt a rescue instillation but my Urologist was afraid I would actually spontaneously miscarry from the stress and pain of the catheter, so it was not done. I am sure many other's share this sentiment and it might offer some insight for why many have not tried it.

I don't truly know anything about the long term safety of these. The only thing I really can comment on is that some patients do develop UTI's from long term catheter use. This happened to a family member of mine but she was of advanced age, weight, and bedridden with alzeheimer's so it admittedly could have been a combined issue with lack of self care-ability to help with the hygiene and an indwelling catheter.

[Trei6y1952]

Your symptoms and IC sound so similiar to mine. I too, have considered the indwelling catheter with a pouch. I am on disability but even if I lost it, my husband and I considered me not working due to the fact that he knows how bad my condition is. Wish I had some answers for you. I am still struggling to find as well. Also, IC diet does not work for me- at all, and I tried it to the tee. What works for the geese doesn't always work for the gander.

[KarenAnne]

My IC was like this until I was prescribed amitriptyline. I was going every five minutes around the clock w/ no sleep in the beginning. I also had bladder spasms & a burning like pain. Basically my treatment plan is: 20mg. amitriptyline, PT as needed, diet, Prelief as needed. I live a pretty normal life now, thank God.