Just diagnosed...would like some support :-(

[straw_bree]

Hi there, how is everyone? :)

Have been a lurker for the past 3/4 months but haven't actually posted yet. I thought now would be the time as have just got home from hospital where I had my cystoscopy (under general anaesthetic...scary!) and have been told by my consultant that my problem IS IC. She didn't really say much else, and actually only came to talk to me in recovery, which I'm not sure is the best time, to be honest. I thought (hoped?) at first i had dreamt it, because she literally came up just as I was waking up, said it was IC, and then left again. Had to check with the nurse that it had really happened. Anyway, she came back a little later and confirmed that, and showed me my bladder pics (nice! lol) which were very inflamed, which she said showed it was IC...is this right? Not that I don't trust her, but am aware that a lot of doctors don't know that much about it... Anyway, like I said, she didn't say much else, and had I not done a huge amount of research before on possible causes for my recurrent bouts of cystitis-like symptoms, would not have had a clue what she meant as no details were given as to what this is. I did double check with her that IC is chronic, incurable and potentially untreatable, which she confimed, but only able to do that because I knew something about it already.

I apologise for the slight rambling, and if I'm not as coherent as my brain thinks I am - am still totally out of it from anaesthetic and stress.

I have been prescribed co-codomol for the side-effects of the cystoscopy (I cannot describe what it felt like the SECOND time I tried to void in hospital before leaving...but I'm sure you all know the feeling. It took me about 20 mins of starting for a mili-second and stopping immediately cuz've the pain. Had to get my mother in with me holding my hand and talking me through it like I was giving birth!), and some sort of anti-inflamatory usually prescribed for acid reflux. Anyone come across this before for IC? None of the nurses seemed to know what exactly this was for: my recovery nurse was looking through a book to try and find out why it had been prescribed, and one on my ward was telling my mother that the pills would help my 'reflux' because I have 'intestinal cystitis'. Eh? Does IC have anything to do with reflux? I'm not aware of having any acid reflux or any related problems...isn't that a totally different system? Is there something else called 'intestinal cystitis' and I've just got myself confused (am 99% certain the consultant said interstitial, and she definitely confirmed it was chronic!) Unfortunately, the ward didn't stock that particular drug so I have to go back tomorrow to collect it once they get it from their pharmacy (was around midnight by this time, so all closed). Will get the name then and look it up.

Almost done. So...so far the symptoms I've had have not been terrible. I have had about 5 bouts of what I thought was general cystitis in the last 6 months, but I don't get pain with it particularly, just the horrific discomfort of feeling the desperate need to void constantly whether there's anything there or not, and spending literally days sitting on the toilet squeezing out drop after drop after drop. Does anyone have any advice for dealing with this? Avoiding it flaring up? Anyone start off with a similar exprience and if so, did it stay the same over time, get worse...go away altogether? Anyone have any general input on what to expect from here on?

Right. I'm stopping now. Will try to sleep - am shattered, had an incredibly long day as worked from 7am-4:30pm before even getting to hospital at 5, am terrified because I feel like I need to go to the bathroom again & really REALLY don't want to, and upset because I was really hoping this was not going to turn out to be IC. On the bright side, my boyfriend is driving for 3 hours tomorrow morning to come and be with me, which is really lovely.

Would love any support, answers to my rambling questions if you can find them in there, advice or just general sentiment that it's ok and I'm not on my own.

Look forward to hearing from someone, thanks for reading!

~ Bree

[baaaby11]

The first thing you could do is try the diet out. Many (including me) have found that avoiding certain foods can help your symptoms.
http://www.ic-network.com/diet/

[straw_bree]

Thanks, will check that out. Is 2am and am still awake, still searching for info. Can find nothing about IC and reflux/reflux drugs...slightly confused. Will have to wait til tomorrow when I go to pick the darn things up.

Thanks again for the response!

[Stella1609]

Is the medication cimetidine (Tagamet)? According to the IC Survival Guide (pick up a copy--it's available in the ICN store and elsewhere and is a MUST HAVE), this medication is sometimes prescribed for IC for the inflammation, like you said. I'm not familiar with it personally.

[straw_bree]

Ah! Have been searching for over 2 hours now and that's the first drug name that has rung a bell. Looked it up and it is used to treat heatburn and reduce stomach acid so that would definitely make sense from what I was told about it and nurses' confusion, since IC isn't commonly known and they were just going off the drug name and typical use. Thank you so much!

[ICNPersistent]

Hi,

You may want to view a new webcast on the Interstitial Cystitis Association's website. There was a free seminar in Atlanta, GA a few weeks ago sponsored in part by the ICA. The doctor who spoke gave a detailed inventory of what he sees in IC patients and how he treats them. I remember that he mentioned using Flomax for female patients who have difficulty urinating. He said that the Flomax opens up the urethra like a straw in case you feel like there's an obstruction there. In any case, don't take it from me. Watch the webcast and learn more from a doctor who is an "expert" treating women with IC.

My urologist told me that he no longer uses the results of bladder hydrodistension as the definitive measure for IC because he said he's seen many bladders that look like they should be IC bladders but they aren't. The patient doesn't exhibit IC symptoms.

You may want to complete the questionnaire that my doctor and his staff used before I participated in an IC-related drug study. The results of this survey tell the doctor a lot about what you have been experiencing. I know women who get up to go to the bathroom one or two times a night but the results of this test indicate that they do not need to be treated for IC because they are not concerned about their nightly trips to the bathroom. I think your level of concern or discomfort or the extent to which you feel inconvenienced or incapacitated by your symptoms is just as important as the results of the cystoscopy and hydrodistension.

I know women who share our symptoms but won't see a doctor. I say find a doctor who is knowledgeable about IC because from everything I've read, early diagnosis correlates with succesful treatments. Early diagnosis is key for anyone with IC because if I understand correctly, treatments may be more effective in a shorter period of time etc.

IC can be just as much a state of mind as it is about your physical symptoms. Your symptoms are real but doctors want to know how much they bother you etc. Keep us posted.

[Bekah79]

I'm also recently diagnosed (this past spring) I am still trying figure it all it out myself so I don't have any real advice other than make sure you are drinking enough water and following the IC diet. As far as meds and treatment goes the others have given some good things to consider. Remember, you are not alone here on these boards. We all understand what you're going thru.
Take care and keep us posted.

Keep The Faith:pray:

[Natsy]

Totally know what you mean about trying to pee after the cysto! My goodness that was painful, like there was glass in there. Every trip to the bathroom a big effort for a good couple of days.

It is very hard to clearly recall everything they tell you while you're still groggy from the anaesthetic.

I take Elmiron and I also take prophylactic antibiotics because my condition originated from sexual cystitis.

I find urinary alkalinizers offer me a lot of immediate relief and I always carry a sachet in case I flare.

I hope you find something that works for you and that you feel better soon.

Take care

x Natalie

[Notgivingup0702]

Bekah,

Why is it important to drink a lot of water? I mean, normally I could see why (to avoid dehydation)...but I find if I drink more than a cup of any liquid a day (any kind of liquid) my 60 trips to the bathroom turns to almost 100+.
Chronic dehydration has become the norm for me sadly. If I drink more than a cup of liquid a day, I seem to also have 10+ noctural awakenings. Whereas if I drink a cup of liquid a day, I have maybe 5 overnight that I get up.

[sailawaygrl]

You need to be sure that you drink plenty of water in order to keep your urine diluted. Otherwise our urine can become acidic and cause more problems. Be sure that you drink water that isn't acidic. You can test yourself or most spring waters are ok. Some prefer the high end waters but I am usually ok with just spring water. (any kind) Never let yourself get dehydrated, especially while taking medications. I find that by drinking the "right" water actually helps with my urgency and frequency. Also with any burning after urination.

Please be sure to drink enough. Check out the ic diet, there is a link on the home page I think. It should help you as well.

Good luck

Sandra

[aebook]

Sometimes coming out of anesthetic they will give an acid reflux med becuase the anesthesia will cause it. However, acidic foods can flare the bladder. I had a talk with my urologist about this, and I told her that it seemed that foods that gave me heartburn made my bladder flare. She said "Of Course they will!" and I inquired why, she said "because those are foods that over produce acid that cause heartburn, it would only make sense they they will affect your bladder too because that is where you void those chemicals through". It hit me like a ton of bricks, and I have noticed that sometimes if I eat something that I know usually gives me heartburn I will automatically take an ant-acid and it does seem to help a bit. Hope this helps some.
I was shocked when I saw my pics too because my bladder hemoraged like crazy when it was full which is what she said was causing a lot of my pain.

[KarenAnne]

:welcome: Bree, You can always get another opinion from another urologist. Alot of us here have. I will chime in & say the diet helped my symptoms. Good luck with everything & feel better soon.