This is happening way too fast for me and I am scared..New Diagnosed.

[dee106]

First and formost I have to say that this site is incredible. I have been reading so many stories, the good the bad, I just want to give everyone a *HUGE* hug. There is so much information, I have pretty much been reading everything... everyone here is a Godsend, *Thank-You*.
I'm 46 (quick background) bladder operation when I was 2 & 4 years old. From 2 until age 6 I had to visit the Urologist every Friday. I graduated and didn't need to see him anylonger (he put the scare of a cathater into me - I really was traumatized from it) I digress, fastforward to today...in between only a handful of UTI's. Then this past Labor day I got a bad one...went on antibotics for one week, did the normal Cranberry juice ect..., that UTI cleared up but I still had incredible pelvic pressure, went back again and tested.... no infection..referred to Urologist he did a pelvic exam and gave me the IC brochere. 9/25/08 had Cytometrogram came in inclusive (as they used the cathater and when I saw it, I started crying and shaking so hard and the sweat poured off my body) the longest hour I spent. 11/26/08 had the Cystoscopy & Hydrodistention at the hospital...I was told 50/50 - 50% get better, 50% stay the same, so why not right? The entire week-end I was in much pain but I kept taking the pain meds and my other prescription. Ended up calling yesterday to get in and was able to see Doctor...I got worse after that procedure....prior to I had a lot of pelvic pain, but now I had the pelvic pain + burning + stinging + pinching + urgency. My bladder was telling me to go every 5 minutes and I would just get a dribble...the next time I felt the need to go I figured I would hold off another 5 minutes...well I did and had an accident...didn't know it until I felt my jeans wet *sigh*. The nurse told me at that time that 5% of people going through that get worse, I didn't know that odd going in, do now. I am used to eating for medical problems and never thought my diet was that bad, but of course everything I was doing at the time for the UTI aggravated my IC. Green tea, alcohol, Cranberry juice...
I am on Elmiron 2 100 mg tablets a day, because of the pain/urgency/stinging they have added Vesicare 1 5 mg in the AM and one in the PM, and Urelle up to 4 a day (these 2 last medications are helping a bit). I go back on 12/18 when my results from the Cystoscopy & Hydrodistention and biopsy will be back.
In the meantime I am a bit confused regarding the elimination diet, since September I only drink water and have only eaten foods off the o.k. list but I am wondering if I should start from scratch? I think I will just start with carrots and chicken for a period of time, if anyone can give me any tips. Maybe I just have information overload at this point. Everything on the IC diet foods to avoid I don't touch anymore, luckily I was never a soda/coffee/chocolate person (I understand how hard they are to give up, been there, done that). And how long does it take to notice results?
I think what scares me the most is being able to reclaim my health. I haven't been to work in 3 days now and that scares me. I read one story where a woman lost her house. I am a single parent and I don't want to lose my job over this. I was able to get a note from my Doctor for this week to be out if needed, so I am hoping that will help...but then I project into the future and think about next week? And why am I living in the future and not the present?
If the Vesicare and Urelle can help with the discomfort then *Great* to me the pelvic pain is the worst and my Doctor already told me when the pain meds run out that is it. I can get through the day on 1 Hydocodone a day, it takes the edge off. I am already scared about feeling the full impact of the pain. Is there any other pain meds to take? I have to tell you before they put me on the Hydrocodone I was up to 15 Motrin a day just to get through the day. Truth be told would prefer to take 1 pill compared to 15 in a day. I am sure that doesn't help my IC either.
Oh, and after the surgery I find it very difficult to ride in a car, I feel every bump in the road, so I position myself and legs to try to help.
I am keeping a voiding and pain diary that I printed off from this site to hand into my Doctor when I see him next and keeping a food intake diary.
When I was in the waiting room I was reading magazine that had a quote in it from Marie Osmond...Tradegy + Time = Laughter, so why not laugh now. *I'm trying* <G> Thank you for reading my words and I will continue to read the stories and tips here.

[Briza]

Hello and welcome:hi:
So glad you found us. I am sorry for your dx and the distress it is causing in your life. IT is NOT uncommon to have an increase in symptoms after a cysto/hydro...it is invasive surgery and the lucky ones take just a few days to recover, others a week or two, others a month to get back to pre-hydro level of symptoms, I am sorry to say.
If Urelle and vesicare are working for some of your symptoms, that is really good! As you have probably noticed already, most of us require a combo of meds to control all of our symptoms, as well as the diet and drinking plenty of water....imperative.
As for the pain...if the hydrocodone works for you, that is also great! It is not unusual for uros to not want to prescribe more than the initial pain meds...some do, but many don't. Since pain seems to be your main problem and you already have found the med that helps relieve it, much better than taking so much motrin in one day!!! then please ask for a referral to a pain management specialist who is covered by your insurance. Your uro should and is able to to do this. IF he won't give you a referral, then ask your gyn or your GP for one, but your uro can give the referral. A pain specialist may even be able to help you find a med that works even better for you than hydrocodone (aka Lortab, Vicodin) BTW I take Tylenol 3 or 4 with much success, it is considered a weaker pain med than hydrocodone, but hydrocodone doesn't work for me AT ALL....just makes me itchy but does nothing for my pain. My Gyn is my IC dr and he rxs all my IC meds including my TYlenol 3 and 4. Luckily these pain meds work for me very well, b/c he told me up front when I first started seeing him 4 yrs ago that it would be the strongest pain med he would ever Rx me.
Many of us require a cushion to sit on while riding in a car or even while sitting at our desks. You can order one specially made for IC patients from the ICN shopl...the link to the shop is up top in blue letters.
Best wishes, please please take a deep breath and try to get some rest and relax. Stress and physical exhaustion are named as most patients #1 trigger for pain and symptoms.
Take care//Bri:)

[Briza]

PS
Of those "5%" who may feel worse after a hydro, worse most often is temporary. Almost ALL patients temporarily feel worse for at least a few days...but of those "5%" only a very very small percentage feel worse permanently...I had major complications after my hydro and a weeks' hospital stay and a very long recovery, but that is rare, and even then I was not permanently made worse. I highly doubt that you will be, either, esp given that you did not have anywhere near the complications that I had.

ALso, yes you can put yourself into IC INTERNET INFO OVERLOAD, even on this wonderful site alone. Please please do take breaks from it when you are feeling overwhelmed. We ALL have to do that at times.

Diet...cut out the major triggers listed in the IC Diet section here on ICN, and try to eat as bland as possible. You should not have to eat only chicken and carrots. Bland, yes, so restricted, no. Eventually your symptoms will get under control with meds, recovery from the hydro, lots of water, rest, reducing stress, and just plain old time. Then you will be better able to determine what your food triggers are and your diet will not be nearly as restricted. But there are many many bland tolerable foods you can eat in the meantime, more than just carrots and chicken, which will give your poor bladder a break and ability to heal. For beverages, yes it is best to stick to water mostly for now.

Hope this helps,Bri:)

[ICNDonna]

Welcome to the IC Network. I know you'll find a lot of helpful information here.

You had your surgery only six days ago --- it can take more time than that to recover from a hydrodistention. Hopefully you will feel better very soon.

A word of caution: most ICers have a problem with ibuprofen so you may want to avoid taking Motrin. You might ask your doctor about trying Ultram. It works very well for me and doctors are more willing to order it than other pain medications.

I suggest you give yourself several weeks eating just the okay foods before doing a more limited diet. And be sure to drink six to eight cups of water a day --- if you live in an area with highly clorinated water, you might want to try drinking bottled spring water (read the label to be sure there are no additives).

Sending warm healing thoughts,
Donna

[elamar]

I was just going to mention that none of my doctors will precribe opiate paid medicaitons. They just don't do it. The only pain medication I am allowed is ultram/ultracet. They are non narcotic but you do need a prescription. They do help with pain reduction, but I am never fully relieved of the pain which really sucks. The urelle does help by reducing frequency which in a way is sort of a form of pain relief. Just so you know, there is a generic of urelle called utira-c that I use. Ultram/ultracet also comes as a generic so that can help save you some money. Good luck to you.

[leelee88]

Once again Great advice has already been given, so I will just add a :welcome: and please know you are not alone and that we are all here for you to help you get through this..

[sickofmybladder]

Welcome - I"m sorry you are having such a hard recovery. I believe I am part of that 5% - but even so - with the correct meds I am better now. My uro has not prescribed me any pain meds either - so I completely understand your panic over the pain - however, there are so many other things you can try first. Definately look at the diet - I honestly did not believe I was diet sensitive until I started adding back in foods - to this day there are some food items that are definately on my never again list - the pain is simply not worth it (tomato products/sauce are on the top of that list for me). Also - if you look over the patient handbook you will alot of drug options - plus alot of us have our current treatments in our signature.

Please let us know if you have any questions - I'm so sorry you had to find us - but this is a wonderful resource to have.

[breannavich]

dee106,

I hope that you are feeling better :) If there is anything I've learned from this site and my own IC it's that everyone is different-this is both a blessing and a curse. I think that diet does have relivance for most people. In my case, I went from being able to eat anything I wanted to having nearly everything I put in my mouth bother me virtually over night. That being said, once you've found any food that sits well with you, stick with it, and then gradually try new foods. For me, I had to stick to a pretty bland diet for a couple of months. I drank only water and ate a LOT of oatmeal. However, after a few months I found I am able to eat quite a few more foods than originally and you also become more aware of when something has irritated your bladder and can make an effort to control it before it gets worse. Right now I am having more good days than bad and, I know it can be insanely difficult at first, but after trial and error, you will find what works for you so keep your head up because we're all here if you need us.

[dee106]

Breanna, I agree with you so much....it was nice to read your words as they stated how I feel. That is how my world changed *overnight* it feels as if my body was transformed in some type of a vortex....I am just eating rice and chicken I added carrots and that was o.k. ..I tried adding green beans *a safe food* but it bothered me...so I think I will hold with what I have been eating....it just seems so surreal. Funny, to think I was just going to start dating to, (guess that is thrown out the window for now). Just finished going through a divorce and thought this is it...a new life a new beginning.....just went in the wrong direction....but I am keeping my chin up...and accepting it...just means I need to re-do and/or re-think a few things...Thanks for dropping a line appreciate it....May you have a pain free day!

[Sarojini]

:welcome: and I'm sorry to hear you are feeling so lousy right now. However, Donna is right - you had your hydro less than a week ago, and many patients can take up to two weeks to fully recover and return to "baseline" symptoms. In fact, some feel terrible for a few weeks and then magically feel much better. Don't panic about your increased symptoms just yet, especially since stressing over them can make them worse :grouphug:

An IC diagnosis can be difficult, as you have seen. Many of us go through a period after diagnosis where we actually go through stages of grief (sadness, anger, etc) - it is like you are grieving for the loss of your old life. However, just like any grief process, you will make it through on the other side okay :) I know it is difficult, but try to remember that IC does not mean your life is over - it has just changed. You've hit a bump in the road of life, and you have the choice to stop and feel like you are missing out on everything on the other side, or you can throw it into 4-wheel drive and power right over that bump ;)

As time passes, you will find that your mind calms down and that you "get used to" the idea of having IC. When that happens, you will begin to take the changes (new diet, new meds, more doctor visits than you'd like, the need to take days to rest at times) right in stride and they will not seem so impossible anymore. Yes, you may need to put dating on the back burner for a few months until you get your symptoms under control, but I'm willing to bet that once you reach this "acceptance" stage, you'll find that dating doesn't seem quite so daunting anymore - and I bet the newly-found confidence you gain from dealing with your IC with strength will make you super attractive to potential partners ;)

I'm glad you found us - it will help to have a good support network over the next few months as you work through all of these changes. Please do read everything you can about IC itself and the treatment options you have. Knowledge is power, and it can help you to know your enemy! The handbook here on this site is a great place to start. I hope you start to feel better very, very soon!!! :grouphug: