This is driving me nuts!

[journalibra]

Ok, so I am still VERY new to having IC and to this forum. However, I need some help here please! I have been in and out of flares for the last few weeks now. One day I'm ok... no horrible pressure or pain and then the next day I can barely move off the couch. The flare all started when I had so much pain and so much pressure and I couldn't void... for a few days. It was scary so my fiance brought me to the ER and they cathed me. I had taken a urelle the day before the ER trip so my urine was bluish-green and the ER doctor told me since my urine was discolored all of the results would come back funky. She put me on antibiotics and told me to follow-up with my urologist. When I got in to see her, she calmly told me that what I had been experiencing is a flare-up. How in the world do we deal with trying to live a normal (or as normal as possible while still constantly having to know where a bathroom is) life? I am so frustrated! Before being diagnosed I didn't have flare-ups like this. Before the hydrodistention I would just have a little bit of discomfort and mostly the frequency and urgency. Now it's not only the frequency and urgency but also the HORRIBLE pain and pressure.

(I apologize to anyone reading this far in my venting and asking for advice on how to cope. Any suggestions on how to help relieve the pain will be well taken. I have tried advil and my heating pad... no luck)

[ICNDonna]

I'm so sorry you have IC; sometimes it's very difficult to handle.

Are you following an IC diet? If not, I suggest you begin today. You'll find the diet in the Patient Handbook at http://www.ic-network.com/handbook --- that single step can be a real help.

Advil and other ibuprofen drugs are a problem for many ICers so you will want to avoid it at least for a while.

You didn't say what your problem is with elmiron, but some people find that it's the capsule itself that's the problem --- if they empty the capsule into water and take it that way (discard the empty capsule), it isn't irritating. It can take up to six months or more to be effective, however.

I hope you find some remedies that help very soon.

Warm healing thoughts,
Donna

[journalibra]

Donna, thanks for replying so quickly. Yes, I am on the IC diet. Also the Elmiron was giving me SEVERE mood changes and I am not up to the point of instillations for medication yet. I am still very new to this condition and very scared of the idea of how bad it'll progress and the idea of the instillations scares me more than the condition itself right now...

[jen74]

Hi there.
Wow, I feel so bad for you. That is so scary. That is my biggest fear, not being able to pee or for my bladder to shut down.
How long did it take for you to be able to pee again? DId you have to have a cath in all the time? I dont think I would be able to stand it with all the pain I have in the bladder. I think I would have to learn how to self-cath if it came to that. I am actually thinking about asking my urogyne to teach me how just in case a time should arise where I cant pee. At least it would save me an ER visit and alot of money. I wonder if it is hard to self-cath, have any of you ever done this and is it pretty easy?
I just finished taking antibiotics for a nasty UTI I got on top of an already bad flare I was in. The pain in unbearable. I also felt like I was not emptying my bladder fully after I went. It is an awful feeling.

Anyhow, I really hope you get to feeling better. My thoughts and prayers are with you and all of us.
Jen

[ihurttoo]

I am sorry to hear of your recent d/x of IC. I know it is scary. But, it takes a few months for the diet and most of the meds to work. You will find alot of meds and treatment options in the Patient handbook at the link Donna gave you.

Like you, I have had retention occasionally too. I did learn how to self cath so that I wont ever have to worry about not being able to go again. It was a great feeling of relief to learn this skill. And no, it wasnt hard to learn at all! I actually taught myself (out of necessity) in about 45 min with no prior instruction! So believe me, if I can do it, anyone can!!!

I want to welcome both of you to the ICN! I hope that each of you finds the right combo of treatments and meds very soon and you both get to feeling better.

Hugs,
Amy

[dancemomof2]

So sorry to hear your flaring. Along with the diet and Elmiron has your Dr tried any other combo of meds to try and ease things up. Maybe suggest trying other things along with the Elmiron. Hope you feel better quickly.

[journalibra]

The retention that I had during the flare was the first time that had EVER happened. Scariest day of my life. I knew I had to pee and nothing would come out. I went to the ER and they cathed me for a few hours and sent me home w/o a cath and I saw my doctor 3 days later and I haven't had retention again (yet...). Now I at least know that I can get an on-call uro through my urologist's office even on the weekend... so hopefully no more ER visits for that. I am not up to the point of asking to learn to self cath. I will wait till it happens more times. As for the other treatments... I am still so new to this. I am on Urocit-K, Urelle (as needed... but now with my retention I am unsure when to take it and not.. so I haven't been taking it much), Prelief, IC diet, and now Nerontin. The elmiron gave me HORRIBLY severe mood changes... I'm not on that.

Thank you for your prayers and info. Does anyone have any "tricks" that could work for getting through these flares? My fiance has been great, but it's still frustrating not being able to help make dinner or anything like that some days. I am just SOOOO frustrated through all of this.

[jen74]

Hi Amy.
So nobody taught you to do the self cath? Was it really hard the first time you did it, meaning getting it in and making sure you were doing it right? Where do you buy the catheters? Do you need to get a prescritpion for them? I am going to ask my urogye or even the nurse to show me how to do it. I mean, that way if I feel like I am not emptying right, I can do this after I pee and see just how much I am retaining if I am. Besides, I dont want to have to pay a huge ER bill just to get cathed if ever there should be a time that I cant go(which I pray wont happen). But I rather learn all I can. Is it very painful when you do the cath? I have pain in my bladder where the bladder neck is, and in the upper urethra. I know this becuase the other day I went to see my urogyne nurse and she cathed me after I peed to see how much was left and when she tried to put the cath in, it was a little difficult at first. She she said she felt some resistence and where the resistence was, I felt pain. So she said I was probably inflammed there. All and all the pain was no severe, but burned like heck afterwards for a while. Do you ever finally get used to the cath? I am starting instiallations enext week and worry about the pain and side effects. I am having heperain,lydocaine, and steroids and biocaronate instillations. The nurse said there should be no bad side effects really and that most her patients get relief. I hope I do. Thanks for all the info and for putting up with all my questions.
Jen

[ihurttoo]

There are lots of different ideas for getting thru flares. I usually try the heating pad, sometimes ice packs, meds, I also usually do a rescue instill at home. (Before I learned to self cath, I went to my Drs. office and had them done there. Depending on the type of flare, many times, it would calm it down immediately. )

Another thing, I bought the urine test strips from the ICN Shop. That way, if I am in a flare, I can tell if it is a true flare or an actual infection. (It is hard for me to tell the difference without checking my urine.)

Regarding dinner, I went thru that too at first. Now, whenever I am cooking anyway, I make double and triple batches of everything I can like soups, cassaroles, meatloaf, etc. That way, when I am flaring, I can just pull something out of the freezer and pop it in the oven and we have a homemade dinner. I also keep a large mixed salad in the fridge at all times. It is a healthy side dish for anything, or can be eaten alone, or I can add a few meats and cheeses to create a chef salad, or we can just eat it with soup, etc. for a stand alone meal. I also keep several loaves of crusty bread like French bread in the freezer to give a little more substance to the soup and salad nites.

I also go to the library once a week and check out videos to keep on hand for me (to help distract me in a flare), and also get some for my 5 yr old, if I need to occupy him for an hour our so, while I am flaring. (I also try to pick up a few new things for him at our Dollar Tree when I am there. I get little things like new coloring books, craft supplies, and inexpensive toys that will occupy him for a bit. Then, when I am flaring and need a few moments pf peace, I can dole them out as needed.


I usually turn the ringer off on the phone so I wont be awakened if I am able to fall asleep during a flare.

Another thing I do, is I try to keep my bedroom clean all the time now. Used to, when I cleaned house, I would start with the other rooms and clean mine last, (if I still had the energy.) Well, I NEVER had an energy left, so mine was always the messiest room in the house, since that is my operations base. Now, I clean it first, b/c when I am in a flare, it makes me feel better if my room is at least clean. But, when it isnt, I find it hard to rest b/c I keep thinking about the mess all around me. I know it is silly, but it helps me to have it straight.

Lastly, no matter how bad I am hurting, if I still can, I try hard to come here, b/c usually someone will have an idea for something that can help, and also, it helps me to spend a few minutes helping others, b/c it is a reminder to me that no matter how bad I feel, I am not alone, and I still have something to give.

I dont know if any of that will help you or not, but I sure hope it does.

Sending hugs your way,
Amy

[SharonA]

One great hint I learned from the people here several years ago is if I am having a hard time voiding, I get in the shower, let the very warm water run over my skin and, once I am relaxed, I usually can then void over the drain. For me, it's all about relaxing if I am retaining. Some say a hot bath works for them.

[ihurttoo]

Hi Amy.
So nobody taught you to do the self cath? Was it really hard the first time you did it, meaning getting it in and making sure you were doing it right? Where do you buy the catheters? Do you need to get a prescritpion for them? I am going to ask my urogye or even the nurse to show me how to do it. I mean, that way if I feel like I am not emptying right, I can do this after I pee and see just how much I am retaining if I am. Besides, I dont want to have to pay a huge ER bill just to get cathed if ever there should be a time that I cant go(which I pray wont happen). But I rather learn all I can. Is it very painful when you do the cath? I have pain in my bladder where the bladder neck is, and in the upper urethra. I know this becuase the other day I went to see my urogyne nurse and she cathed me after I peed to see how much was left and when she tried to put the cath in, it was a little difficult at first. She she said she felt some resistence and where the resistence was, I felt pain. So she said I was probably inflammed there. All and all the pain was no severe, but burned like heck afterwards for a while. Do you ever finally get used to the cath? I am starting instiallations enext week and worry about the pain and side effects. I am having heperain,lydocaine, and steroids and biocaronate instillations. The nurse said there should be no bad side effects really and that most her patients get relief. I hope I do. Thanks for all the info and for putting up with all my questions.
Jen

Jen,

Before I learned how to do it, I had been cathed many times at my Drs. office during the course of having rescue instills. I had them 3 times a week there for years. But, the day I had to learn myself, I was actually in the hopsital in ICU. I hadnt been able to urinate for over 12 hours. I had called the nurses several times, and they said they'd come, but never did. Come to find out, there were a couple of Codes, so they were tied up with those. Meanwhile, I was suffering something terrible. Since my Dr. had been there the nite before and did a rescue instill, the cath he used was still in the garbage. (I KNOW!!! EWW!! ) I didnt want to do it, but when you are hurting that bad, you'll do anything! So, I dug it out of the garbage, cleaned it the best I could (which I am sure was woefully inadaquate!), and proceeded to do it myself. It took a while to find the urethrea, but once you got it, obviously you know it, because you start peeing.

Obviously, my experiance is not the ideal way to learn this skill. However, I am glad that I learned. I am sure your Dr. will teach you, if you ask. You dont need a script to buy the caths, but insurance wont cover them without one. (Some insurance still wont cover it...but that's a different subject!)

Since you are starting the instills, I am sure you are worried about them hurting. I know I was! But, there are several tricks that can get you thru it as painlessly as possible. First, ask for a r/x of Lidocaine 2% jelly. It is a topical numbing agent. It comes with a little cone applicator. I squirt it into the urethra about 15 min before I cath, and that keeps it from hurting. Also, as an added safeguard, when I was going to the Dr. to have it done, I also applied an ice pack down there and held it on right up to the moment the inserted the cath. (That way, I didnt even feel his hands so it kept me from tensing up.) When you tense up, it causes more resistance and makes it hurt more.

Also, you can ask your Dr. to use the Lidocaine to lube the cath.

Lastly, I use pediatric caths. They also use them for infant feeding tubes. They are very small. Some ICers also request latex free caths and find they hurt less. I personally dont have a problem with latex, but some ICers say it really makes a difference for them. So, it might for you too.

I hope this helps you. Please let us know how it goes.

Sending hugs,
Amy

[journalibra]

Everything you suggested is great advice thank you so very much! I don't have children (yet) but I am even debating on the buying of fun little activities (coloring book, etc) for me to do to help get my mind off of the pain during the flares.

[jen74]

Hi Amy.
Thanks for responding so quick. That is the bad thing with the UTI test strips, for some reason when I had this last bad infection, my test strips were completely normal. EVen the test strip that the doctor used was normal, yet they sent the urine to be cultured and it picked up that I had a bacterial infection. For me this stinks becuause I will never know if I have an infection or if it is just the IC. I feel like I will have to keep getting urine cultures and the doctor just to see if there is an infection or not since the dipstick tests did not show it. It was a common bacteria(e-coli) and I was suprised the test strip did not pick it up. I even tested in the morning using my first pee.
I am going to get the installations next week(arrrrg! And I just rememebered my period is due Sunday). I think the nurse told me that I could still do the installation while I have my period, that it does not matter. I am thinking about asking for 1 antibiotic pill for each time I do an instillation though because I am so scared that I will get another infection.
What kinds of meds do you take that help you when you are in a flare? I seem to be in a flare all the time lately for the last two weeks. This UTI I just got over really messed me up as far as pain goes. I feel like I cant get rid of this pain. I do also use a heating a pad when things get bad. For some reason, cold maked me feel worse. I also have vulva issues(vulva vestibulitis) which can be very painful. Just touching the vluva area is painful for me at times.
Does the neurontin help with your bladder? My doctor gave me a script for lyrica to take. I have not yet taken it, but am thinking about it. I am just afraid of the side effects. Especially constipation since I tend to lean there as it is. HAve you heard anything about lyrica helping IC?

Thanks so much Amy for all the info and help. You are a gem, and I am glad I found this site.
Jen

[ihurttoo]

Jen,

Gosh, I hate it that the test strips didnt catch your infections! I have had that happen a few times, but not very often. But, usually when that happens, I can still tell I have one because I have fever, or my urine is cloudy and smelly. (Sorry to be so graphic!)

Actually, I forgot to mention, but I DO take an antibiotic daily to ward off infections now, since I had 10 last year. I still dont know if it was all one infection, or 10 separate ones, but I seemed to keep an infection all the time. So, he put me on Macrobid 100 mg a day to stave off the infections. So far, I have only gotten one infection since then, and I have been on it about 6 months. So for me, that's a record! :woohoo:

Since you are so prone to infections too, I would definately ask if daily, low dose abx are an option for you.

You asked about my pain meds. I take Kadian (morphine) and Lortab. I go to a pain mgmt Dr. who oversees my pain control. It has truly been a God-send. If your Uro cant (or wont) get your pain under control soon, please ask for a referral to one. I suffered for 4 yrs b/c I kept thinking my Dr. would help me with my pain, or something would work and I wouldnt hurt like that anymore. Finally, I found the ICN, and the wonderful ladies here told me to get my butt to a pain clinic and get that pain treated! It sounds stupid, I know, but I had no idea that Pain clinics treated IC patients! I thought it was just for cancer patients! Pretty silly, huh? Thankfully, I took their advice and it has been a God-send!

I hope that you find something that works for you soon. I know how terrible it is. I really, truly do.

Feel free to pm me anytime. I hope you get to feeling better!

Hugs,
Amy

[IC SARAH-CPP]

This was actually one of the hardest things for me to deal with with the IC. The ups and downs all the time. I would make plans and then, wouldnt you know it , I would get a terrible flare right before.
I have told my doctor it is actually harder to feel bad after you have felt really good. I would feel like I was starting to be normal, then bam, it was all taken away from me.
But after awhile, I started to deal better with the ups and downs. I try to remember during the downs that I will feel better again. I got better about just telling people that No, I couldnt get together with them because I felt terrible. It is hard but I think you will learn to adjust a little more.
I think someone here told me the year after your dx is the harder time of all and that was true with me. I just struggled and struggled but it evens out after a time. Try to hang in there And vent to us whenever you want!
Sarah