Well, it's true...

[littlegigglebug]

I had a Cystoscopy & Hydrodistention on Friday that confirmed my diagnosis of IC. :(

I am absolutely devastated. And yes, I'm feeling really sorry for myself, so please forgive this "pity party" post of mine. I didn't realize it would hit me so hard when IC was confirmed. I knew there was a really good chance, and I thought I was more prepared to hear it, but I'm not doing so well.

I am a former elementary school teacher, now a stay at home mom here in Annapolis, Maryland to two beautiful girls, Kelsie (4-3/4) and Carley (16 months). I am surrounded by wonderful friends, family and a supportive husband. I know that anxiety/stress can exacerbate IC, which helps to explain why I am so miserable. Our family has been hit with a lot of challenges recently, including my mother who is going for open heart surgery this Friday the 31st. As you can imagine, I am stressed beyond belief about her surgery. Also, my husband has to work away from home (4-1/2 hours away) during the week until December.

So, someone please tell me how I'm supposed to make it through the spring and summer at the park/playgrounds and the pool; at soccer practice and soccer games, dance class, dance recitals, doctor's appointments; taking care of my mom... :( Exercizing?? losing this 16 months worth of baby weight from my not so newborn baby so I can fit into my size 8 jeans? LOL! From what I can tell, there's no chance for that with this medication I'm now on. :headbang:

So, Friday evening after my procedure was spent loaded up on pyridium and peeing razor blades, pratically screaming on the toilet. I spent all day Saturday in bed/on the sofa on the computer doing research and trying to get up enough nerve to start taking all these medications my doctor threw at me. Sunday I slept most of the day/night and only got out of bed to eat or pee. I feel terribly guilty for my children and husband. Today I'm here on the computer writing this and even laughing a bit as I type, so maybe I'm feeling a bit better? LOL! It helps that hubby took the girls to lunch I think.

Well, thanks for "listening". I am so glad I found this forum. It seems to give me hope. :)

[ISONormal]

Heather,
Welcome to the IC Network and to a new extended family who is here to support you. We all understand your reactions and what you need. So let's begin that discussion. What medications are you on? (Don't assume that you won't lose the weight. Others have.) What kind of pain are you feeling? All the time, just when the bladder has urine in it? What does the pain feel like. I'm a mom, too, although my kids are a bit older. I telecommute, and have the kids after school, too. The pool is easy, since they have a bathroom there, probably, right? I find the pool relaxing and it doesn't bother me, but some say it bothers them. Just make sure your bathing suit isn't really tight across your abdomen. Get yourself lots of heating pads. I've found that it helps to have several you can plug in around your house, and one next to your bed to use at night. Then buy some of the ThermaCare pads (or ones like it) that you can stick to your underwear and they'll help reduce the pain for 8-12 hours. They are fabulous to take the edge off the pain. There's so much more to tell you! So much that each of us have found will help you! So don't despair. It's probably as hard as it will ever be right now, because you haven't been on meds and you've just been diagnosed so you are new to learning the "tricks" that each of us learns to help reduce the pain. Things like: wear cotton underwear, sleep on your back at night (that might be only me; if I turn to either side, sometimes it hurts more), stuff like that. There's a newbie's kit on the ICN site you should study. Keep asking questions and I'm sure many of us will help you. I'd love to speed up your learning process!

Sorry to hear about your Mom. My prayers are with you and your family.

I love Annapolis! It's so beautiful. It's a fun place to shop, too.

[Allyoopa]

Hey Heather,

And don't forget NO bubble bath, watch out for toilet paper sensitivity, laundry detergent, never use perfumed Bounce or Fabric Softners. I change my undies twice a day and use wipes to stay clean throughout the day. Be careful of lubricants also, always make sure that they are water soluable. It all sounds too much at the beginning, but once you get into the rythum of things it gets much easier. There are plenty of books to read and of course this network that will help a lot. IC is new to you and anything new is scarey but the days will get better as you learn what your own personnal triggers are as we are all individuals with individual sensitivities.

Good Luck with Everything
Adele :kissing:

[Ann228]

Your post has really touched me. I felt much the same way when I was diagnosed. It is a load to handle. I am not new to IC but am new to joining in on the boards. I did not seek any support from here when first diagnosed so I encourage you to go that route. I can see now that here there are a lot of people that understand what you are going through and it helps to hear support from someone that understands exactly what you are experiencing. Very hard for me to accept as I was a very independent person but we all need a little sympathy, help, and kind words from time to time.
You can find a lot of little helpful hints on the posts here, too. I also try to concentrate on what I can do rather than what I can't do-what I have managed to do rather than what I wasn't able to do. I hope you start feeling a lot better soon. Keep laughing :biglaugh: -humor can be really good medicine.

[ICNDonna]

When my IC was diagnosed back in 1975, I had never heard of it and the more I read, the more upset I became. I have since learned that I have more good times than bad --- and that there is life with IC. It took me a while to find which treatments were most effective, and since not much thought had been given to a diet connection at that time, it took some time for me to realize that certain foods are a problem for me. Interestingly, when diet information came out, all of my trigger foods and drinks were listed as bad for IC.

Just remember that for every individual posting here because they are in pain, there are literally hundreds out there who have IC but are not posting because they feel good and don't feel a need for the support of the boards.

I know you're worried about your mother. When my husband had open heart surgery six years ago, I was totally terrified. What it did for him was go allow easier circulation and he feels much better than before the surgery. I'll say a prayer for your mother.

Sending warm welcoming hugs,
Donna

[hoping4acure]

Hi and WELCOME!

We all know how you feel. You have gotten some great advise. Please be sure to follow the IC diet...it's really important at this stage.

I am an avid runner and I weight lift with my husband. I can tell you from experience, with time, and letting your bladder "heal" you will be back in those size 8 jeans ;)

This is a great place. There is a ton information on this site. I didn't find it right away, I wish I had!

Anyway...don't be shy, and ask us anything that might be on your mind.

And yes...there is HOPE!

[BellaTutu]

Welcome :welcome: ! Glad you found the site, you'll find a wealth of information here as well as lots of support, a place to laugh, cry, scream and every other emotion in between!

[emilyrose197377]

:welcome: to the ICN.

[littlegigglebug]

WOW! I am so overwhelmed with all your wonderful responses! It makes me so sad to know how many of you have been suffering with IC for so long, and until a few weeks ago I never even knew it existed! I will post more later (I have to get the kids dinner and to bed).

:grouphug:

[littlegigglebug]

Hi everyone! First I have to thank you for all the encouragement and well wishes for my mom. Tomorrow is the big day and I have faith all will go well. :)

Thank you also for all the instant support and encouragement regarding my new diagnosis of this dreadful IC. You have offered so much advice in just this one thread! I don't feel so alone anymore, and it's very clear there is a wonderful "family" of ICers here.

I'm doing better mentally now LOL, and have pulled myself out of my original slump, but still have a lot to learn. I actually made it through my daughter's soccer practice last night (hubby pratically had to drag me out the door), though I was in misery the entire time. This disease really sucks!

ISONormal asked about my pain and current meds. Well, my pain is mild to moderate. The pressure and urgency I feel is CONSTANT with little to no relief after peeing. When there is small relief, it certainly doesn't last long. Yesterday I met with a Nurse Practitioner in my Urologist's office and she seems to be very knowledgeable on IC and open to many options/alternatives. She says I am currently in a "chronic" flare, which explains why I can't tell much difference with anything I do or eat. She didn't say how long I'd remain in this flare... any thoughts on this?

My IC meds are:
Elmiron, 200mg 2x day
Atarax, 10-20mg at bedtime
Amitriptyline 10-20mg at bedtime

Regular meds:
Zoloft, 150mg 1x (prescribed to me for post partum depression)
Synthroid, .112mcg 1x (hypothyroid)

So, here I am almost a week into my diagnosis. Don't they make some type of pad you can pee in? LOL!

Hugs to all of you!

[dancemomof2]

Hi Heather,

First off Welcome, and second heck with that baby weight. My baby is 20 months old and I still have the weight to remember him by :biglaugh:

I also struggle with the dance class, recitals, school band, before and after school tutoring, everyones dr appt. etc...... the list is never ending. I also have a 13 year old and 9 year old daughter so I know how hectic schedule are. Breath deep and take one step at a time. Stress is on of my main Ic aggivators so do what you can and ask for help when you can. I am so sorry you have to deal with this without hubby most of the time. When mine is here he is "usually" somewhat of a help to me (not always)

I have gotten to the point with my IC that I refuse to let anything it dishes out to me ruin my kids life. I hope you can get some medication relief to help you out and make you feel better real soon.

Maybe we can all buy those puppy pee pads to carry with us. :biglaugh:

[Annie2]

Let me add another :welcome: to the ICN. I am so sorry you were diagnosed with IC. It is a big and bitter pill to swallow and takes some time to digest it all and come to acceptance. The others have already explained it, but I would like to re-emphasize the fact that the vast majority off ICers do, in time, find effective meds and treatments that allow us to lead fairly normal lives. So hang on to hope and remember we're here to help you in whatever way we can as you begin this journey.

It sounds like you have found a good urologist with a knowledgeable NP. That is great and very important! The nurse practitioner gave you good information. You have been living a normal life and eating a normal diet. Unfortunately, your diet likely included many foods that can irritate a tender IC bladder. As you developed IC, these foods as well as other factors (like stress, etc) have increased the inflammation of your bladder. It will take some time giving your bladder a rest and the optimal conditiions it needs to start calming down. It took time for all this to develop and it will take time for it to calm down. Makes sense, doesn't it? How long will it take? Well, there is no one answer to that question. We are all individuals and respond in our own ways to foods, meds, treatsments, etc. Following the IC diet carefully, especially now as you are trying to create the best conditions for your bladder to improve, is crucial. On average, most of us started to see some improvement in about 2-4 wks. Some see improvement faster than that. Once this does happen, you will be able to tell if you have consumed a food that has irritated your bladder because you will see an increase in your symptoms. Right now it is hard to tell anything because your bladder is so terribly irritated. It is hard to be patient when all you want is relief right now! Hang on, though, and you will very likely see improvement in 2 or 3 weeks.

In addition to diet, there are other factors that can cause flares. A huge one is stress. With your mother's surgery and all going on in your life, it is likely stress isn't helping your bladder now, either. Once you are past this difficult time and the stress decreases, your bladder will likely respond better to treatment. For now, do all you can to reduce your stress and take time whenever you can to relax and pamper your bladder.

The meds you have been given are very typically the first meds ICers try. Everyone responds to meds a little differently. I hope these all will work for you. Do remember the Elmiron can take 6 mos to a yr. to be fully effective. The other meds may help you get through that wait. Elmiron doesn't work for everyone but does help many of us. Some begin to see improvement in just 2-3 months from Elmiron and, for others, it may take longer. So please do not become discouraged if you do not see immediate results.

We're all here to help one another and I'm glad you have joined our ICN Family. Don't hesitate to ask any questions you may have. We'll do our best to answer them. This a wonderful group of very supportive people and the site is just full of valuable and helpful information.

You asked about pads....yes, you can purchase Poise and other brands of pads. When you get a chance, also check out the ICN Shop on this site. You will find lots of products (like travel johns for emergency situations, cushions that make sitting and riding in cars more comfortable for ICers, books and lots of yummy IC-friendly foods and snacks) that may be very helpful to you.

:grouphug: Hugs to you and prayers that all will go smoothly for your mother and her recuperation will be rapid.

[Babs RN]

Heather,
We are the same age, so I understand feeling like your entire life has now been put on a course to the unknown. I am an ER nurse who now stays at home with my 5 year old, Lindsey. My husband also works away from home frequently, thanks to the state of world affairs--he is in the Army. He just returned in December from a year in Iraq and after 2 months at home got selected for a senior service school in Rhode Island. The kicker is that he left for an additional 4 months away from home so I know what it is like to have to worry about dinner, baths, school drop offs, etc.(Annapolis is enemy territory, however since my hubby went to West Point--grin :) ) I am like Leslie in alot of respects, I choose to be present and not let the IC stop me from my day to day activities, or take so much medication that I cannot adequately take care of my daughter. Are there days that the pain gets me down? Absolutely. Are there days that I want to knock the pain out completely with meds--Yup! I guess over time I realized I can work through pain spikes and survive. Enough rambling, welcome to our bladder neck of the woods and please let any of us know how we can help. I will keep your Mom in my prayers tomorrow.

Hugs,
Barb :grouphug:

[sandramac]

:grouphug: :welcome: :grouphug:

[flgirl]

Heather,
I got diagnosed the day before you after having a Cystoscopy w/ hydro. I too was devastated when the doctor told me. I also had a positive Potassium Sensitivity Test so you think I would have been a little prepared for the bad news but I was so upset when my uro told me I definately had this horrible illness. I am one of the lucky ones because I have a great PC doctor who sent me to a urologist as soon as I started having symptoms and he sent me to a great Uro who within a few months of trying meds for overactive bladder which didn't help much...told me to come in for the PST. I know a lot of people who suffer for years before they found out what exactly they had. I'm hoping because of this and starting meds in the early stages that'll be what helps me in the long run. I hope all goes well for you...
flgirl ;)