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  • ICNDonna
    replied
    I think my absolutely worst time with IC was that time before I was diagnosed. Somehow it became easier to deal with it once I knew for sure what it is I had to deal with.

    Warm healing thoughts,
    Donna

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  • Whatisthis
    replied
    I just got back from the distention... I don't know whether this is the beggining or end but it does appear to be I/C (officially diagnosed),,,,, The effects of the distention feel mild at this point but I will let you know...

    Elmiron to begin.. What should I expect
    I see the I/C diet but are there any other no no foods you can think of..

    I will chat again I got to get myself together

    Leave a comment:


  • ICNDonna
    replied
    It's hard to know what questions you might have. I always think it's a good idea to write them down when you think of one --- and take the list with you to your appointment so you won't forget to ask anything.

    I always spend a night in the hospital after a hydrodistention for a bladder irrigation and pain control. By the time I go home, I feel pretty good. That first time to urinate after a hydro can be very painful, but after a few times, it's not bad. You'll want to be sure you can urinate well before you leave the hospital. It's no fun to get home and not be able to --- unless you self cath, it can get pretty bad before you can get in to be cathed.

    My suggestion would be to be sure you have pain medications to take for the first few days if you need them. Some doctors order antibiotics. I have IV antibiotics when I have the procedure so don't get an infection afterwards.

    I hope your procedure goes well.

    Warm hugs,
    Donna

    Leave a comment:


  • Whatisthis
    replied
    One last thing before the distention..

    What things should I be asking my Uro (Last check)?

    What meds were prescribed afterwards or during distention (I/C or no I/C)

    What does it feel like afterwards? I read mixed things it helps I/C but it can be painful? I'm a little confused... eek

    Leave a comment:


  • ICNDonna
    replied
    Welcome to the IC Network. I does sound like what you have could be IC. The hydrodistention is a good way to find out.

    When I have a hydro, I plan on taking it easy for a few days, then go back to my normal routine. When I worked I took a little less than a week off, but this can vary from patient to patient. Some go to work the following day; others take a month or more.

    Sending healing thoughts,
    Donna

    Leave a comment:


  • MelanieJean
    replied
    Hey you. Stress for me is a HUGE trigger for my IC flares. But stress doesn't cause IC. Insanity definately makes IC worse... hehe Life is hard. Life with IC is even harder. As for my diet, it's very, very bland. I follow the IC diet. I believe that the diet is on this site somewhere... The thing I miss the most is lasagna... Ah, the joys of the past. hehe If you ever need anything, let me know. ~mel~

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  • rnewman
    replied
    Hey there~

    Welcome to ICN. My first clue was that I was getting up at night. Well, not out of my sleep, mostly when I first laid down I get up 15 times before I went to sleep. Ugh. ANyway, unfortunatly the diagnosis of IC is simply the ruling out of EVERYTHING else. Once you know its not an infection, an STD, kidney problems, etc, then you think IC. I am 24 and started having frequency about 3-4 years ago. After my cystoscopy with Hydrodistention under anasthethia, my urologist said he didnt see much-- he said "Lets just call it overactive bladder for now." After I told him that detrol did not work for me, and that nutra sweet bothered my bladder, he said OK you have IC. Unfortunatly no definitive test can tell you that!! Its a process of elimination....and sounds like your going through that process.

    I would see how the hydro goes. They (if it is under anasthethia) will check your bladder capacity. THey will possibly also biopsy to make sure there are no cancerous cells, always important. Im not going to lie to you-- Although I felt no pain during or immidiatly after the procedure, i was miserable for a few weeks!! I called my uro complaining all the time. He did say when I woke up that he had been "agressive" in there so things might be sore. Uh, thanks alot. He did not see a whole lot of irritation, but he did see that I have an extra ureter from my kidney to my bladder, so I process extra urine. (I guess he was so agressive so he could show all the FIVE medical students in there my weird kidneys!! lmao Thanks a alot- -it hurt!!) Anyway, you WILL however recover. And in time, you will discover what works for you and your IC. For me, I watch my diet, but I dont just cut things out, I balance my diet more--- I drink almond milk, which is basic (opposite of acidic) and I eat lots of veggies, also somewhat basic. If i do want to eat very acidic foods, I use prelief, a calcium supplement that cuts down on the acid, before I eat. Bextra does help me on bad days. Pyridium, however, is usually NOT a long term therapy. It can damage your liver. It can be used in a flare, when your in bad pain, after your Hydro...ugh Ive used pleanty. But not an every day treatment. After awhile, I dont take the pyridium as much anymore at ALL. In fact, although it numbs me for a few hours, afterwards, I have noticed that my bladder is even more irritated so I just stay away. When Im flaring I drink my almond milk and LOTSSS of water. The best treatment for me has been to cut out "junk" in my food- Nutra sweet, preservatives, etc. I have chosen to take mostly natural supplements for my IC, glucosamine and MSM. There are many treatments, and many people on here take different things. In fact diet can be different too- what some can tolerate, others can not. I wish you the best of luck and hope you find what works for you.

    Oh-- and if you can? Schedule your hydro when you have some time to recover, dont rush yourself.
    Oh-- one more thing... about the stress-- having JUST graduated, YES, it plays a huge part. Progressive relaxation helps. And, while in school, just basic time management helps too. If you are in school, some schools might have free counseling and they may be able to help you with the relaxation part. I did that at my school and it was a big help. Your right-- this sounds crazy, and it is alot, but your also right, life goes on, you find what works, and you take care of yourself.
    Good luck, I hope this helps. Dont hesitate to contact me if you have any questions. I hope you find relief soon.

    wink Rachel

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  • auntiedeb
    replied
    hi and welcome to the boards. I am so sorry that you are going through this. It sounds like ic to me but I am no doctor. Let us know how they hydro and cysto go and please keep posting andlet us know howyou are doing.

    Leave a comment:


  • Britgal
    replied
    Hi and good luck with your hydrodistension, at least it will give you a diagnosis and you can start fighting this IC pest, lots of luck Iris hi grouphug

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  • vm
    replied
    There are oral drugs, too, that might help. You might take a peek at the section in the Patient Handbook on treatments. That way IF you do have IC you and your doc can discuss lots of options.

    Leave a comment:


  • Whatisthis
    replied
    thanks I will check these out. I guess the hydrodistention is next. If that's a positive then I will have to post to see what drug cocktails work??? banghead

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  • vm
    replied
    Oh, and in terms of diet, this page from the Patient Handbook is a wonderful place to start:

    http://www.ic-network.com/handbook/diet.html#topten

    Leave a comment:


  • vm
    replied
    It sounds similar to some symptoms I had. I hope the cysto w/ hydro gives you some more answers.

    Stress can definitely make my IC worse. Stress does not cause IC, but it sure aggravates it. There is a page here that talks about the role of stress in IC. If you are interested, here's the link:

    http://www.ic-network.com/clinicaltr...ngton1202.html

    Leave a comment:


  • Whatisthis
    replied
    Thanks for your kind words...
    This seems like insanity, but your right life must go on.

    I don't know how much stress has to do with this what are your thoughts? If so what relaxation techniques are there?

    As for food changes what tyoe of diet do you hold to?

    Leave a comment:


  • MelanieJean
    replied
    Hey you. I'm sorry to hear that you're feeling so badly lately. I'm not a doctor, actually far from it... hehe But you're describing my symptoms of IC. But, there is hope!! The hydo will help your doc to diagnose IC, if that's what you have. I was fully recovered from my hydro within 3 days. I had mine on a Friday afternoon and was back to work on Tuesday. I would have been back to work on Monday, except I took full advantage of my pain meds and hung out with my friends on Saturday... (Not too smart...) As far as IC coming out of nowhere, I didn't have any bladder issues until I got a UTI and peed my pants in public. From that day forward, I've had the never-ending joy of peeing my pants almost everyday... hehe There isn't one specific reason why IC strikes. Some people just wake up one morning and have it. Some are like me, an infection brings it on... If you ever want to talk, you have any questions at all, or you even just want someone to complain to, just PM me or slip me an email. I'd love to help you out! I know that it's hard to live with IC. But there are tons of people here to help you cope! I know that all these guys help me through the hardest times with my disease and I know that they will be there as long as I need them. That's what friends are for. I'm sending you some sugar-coated, happy little thoughts, so that when life gets horrible, you have the strength to make sure that the potty-man doesn't suck you down.

    ~mel~ toilet blink

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