almost diagnosed

[isles]

Hi Everyone

I was told yesterday, after a year's worth of pain and wrong diagnosis, that I most likely, have IC. It's been a really scary time for me, not knowing what was wrong and to feel so much pain, but even after knowing, it's scary. I'm going for my first cysco soon and I am really nervous. I don't know what to expect; all I know is they will sedate me and it's an 'out-patient cysco.' I'm going through a lot right now, emotionally and physically, and I'm scared. Does anyone have any words of encouragement for me?

[tigger_gal]

isles ((((hugs)))
from what you are telling me you are having a hydrostention and cystoscopy. You will be under sedation and they will fill your bladder to its capacity and look at it with a microscope. they will be able to see if you have any pinpoint bleeding. You may hurt a few days after, but, with any luck it will help you. Many gals have them done for IC treatment, with outstanding results.
I am sure you will do just fine.. sending you out lots of hugs and prayers.

[isles]

thank you so much for your encouragement, and for your hugs and prayers; this is a difficult time for me, my husband is very supportive but i still feel isolated and scared
when you say it may hurt, what kind of pain are we talking about? pain where they insert the catherat or other type of burning/pain?
thank you again, im sending prayers and hugs your way too

[tbokay]

If I recall correctly I just felt really crampy for a few days afterwards. My cysto with hydro was 13 months ago and I did pretty well for 2 months.

I wish you luck and quick/painless recovery. Please let us know how you do and what the doctors are able to determine.

[traceann]

Hello isles and :welcome: to the family!! So glad you found us, this place and these people are the BEST :kissing: There is a ton of info here and a ton of support, shoulders to cry on, you name it, it's here :biglaugh:

I personally have not had the procedure done, but I am well aware that so many benefit from it as a "bonus" side effect of the test. From my understanding of it all, you will do wonderfully! No worries! ;)


Here's a couple links that may be helpful to you, (you might have already found them, but I'll post them for you anyway, :biglaugh: )

Patient Handbook:
http://www.ic-network.com/handbook/

The Handbook has tons of information on treatments, procedures, medicines, diet and practical lifestyle advice, very very helpful!!

IC Diet foods list:
http://www.ic-network.com/handbook/diet.html

This is the list in the Handbook, and is a wonderful tool for helping to control symptoms, I know it helped me greatly!!!

Hope this info helps you a little, again I think you will do just fine with your procedure! And I do hope to see you around the boards!!! ;)

Hugs!

[jen48446]

Wow I'm really relieved to hear your doctor is intelligent enough to do it outpatient!! It hurt like *&^% to pee for about a day afterwards, I peed blood too, I could tell exactly where they had that scope however after the 1st day, the burning stopped and so did the blood. I had mine done on a Friday & went back to work on Monday, thankfully I scheduled it on Friday or I would've called in the next day that is for sure!!! Considering I had mine done in 3/99, I still remember it like it was a month ago. Hope this helps:-)

Jen

[isles]

aww thank you so much, all of you have been really nice and encouraging; thanks for the links traceann :) and all of your comments jen and tara; so this is like a surgery? i mean my doctor kept saying it was just a test to diagnose but yall make it sound like a proper surgery :/ I will get it done probably on a Thurs ( I usually have Fri-Sun off) so I have some time to recover; I'm such a scaredy cat/sensitive thing; I mean I'm scared of blood tests!!! So you can probably imagine how scared I am about this test; I'm feeling really down though ever since I found out; I'm not even sure why, my husband is great and very supportive and caring, but still, just this feeling of inadequacy and dependancy that is bothering me. :( Have a good night everyone...

[Babs RN]

Once again Ms. Tracey has given you excellent resources, I just wanted to add my hello. Good luck as you continue this journey to IC diagnosis and know we are here for you.

Hugs,
Barb :grouphug:

[traceann]

Hey isles, it's perfectly normal to feel out of sorts when you are given an "almost" diagnosis...on one hand you are so happy to hear a name for how you feel, but then the "oh great, I have this - now what?!" comes along. It's going to take you some time to wrap your mind around it, so don't worry and just feel how you feel. As time goes by you will deal with it without batting an eye! ;) And like Barb said, we are always here, for support, or just shoulders to cry on, venting, ranting... whatever! I think we have covered it all, and lately a rash of comedians...LOL. :loco: Gotta keep everyone laughing, it's the best medicine after all!! :biglaugh:

My thoughts are that it's like having any kind of test under general anesthesia, like a colonoscopy has you knocked out fairly well...well I was anyway, lol. My colonoscopy was done at the hospital outpatient surgery wing, for recovery etc. Again, no worries! I am the BIGGEST chicken and I will never be afraid of having that test done again...ever. My biggest fear...and it's silly - was the IV!! I hate needles!! :biglaugh: You will do fine. And when you are in the prep area when the nurse goes over things with you TELL them you are nervous etc. I did, and they were really great with me! :) Don't be afraid to tell them you are scared, lol.

Hugs!!!

[ICNDonna]

:welcome: I'm glad you found the IC Network. I do think it would be a good idea to read about the tests in the Patient Handbook at the link in Tracey's post. I think very probably the test planned is the cystoscopy with hydrodistention. It's always easier to face something if you have some understanding of what it is you are facing.

And --- it's normal and human to be nervous before tests.

Sending gentle hugs,
Donna

[isles]

I have been thinking about it a lot, and I thank you all for your kind words and encouragement; I'm not so sure I want to do this anymore, it just sounds so painful and not neccessarily that helpful for everyone who has it done. I mean I've been doing all the things in terms of the diet, clothing, soaps, pain medication etc; and I'm feeling ok, yes it would help to be properly diagnosed but then what? I'll do the same things I'm doing now after going through days of pain and burning and cramping? I know I probably sound crazy but I am just so scared; and I read about it in the handbook and that is scaring me more! :( AHHHH I just don't know what to do or how to feel...

[Babs RN]

Please don't let the handbook scare you. Like the old School House Rock thing, knowledge is power. Ultimately it is your choice, but in my humble opinion, I would much rather have a definitive dx, especially if I needed a referral later. I know it is a ton of info to digest.

Hugs,
Barb :grouphug:

[jen48446]

Honestly I'd do what I had to do get a diagnosis for my own self but that is me. I was diagnosed improperly @ 18 with IBS-C through a Laparoscopy and D&C, they thought I had endometriosis, they instead said I have IBS & add fiber to my diet. 2 years ago, I took it upon myself to find a good GI doc, told him what had happened when I was 18 & told him I wanted a proper diagnosis. I had the Colonoscopy done shortly thereafter. He said the same as teh other doc did afterwards but atleast I knew for certain I indeed had it!

just my 2 cents:-)

Jen

[traceann]

Oh I must chime in with the rest, I too would get a definitive diagnosis. I can say usually testing-wise it's never as bad as you think it will be, really.

I put off having a colonoscopy for 10+ years. After having my appendix removed and a biopsy of part of my intestine that had to be removed as well due to "inflammation" showed potential for Crohn's Disease. They basically said, "here you go it's Crohn's, have a nice day". Later, as I never had any more problems with my "Crohn's Disease" (but lived in constant fear) my internist started to wonder and said the only definitive way to know for sure was to do a colonoscopy...um, no thanks. Well, this past year after months of misery with all sorts of strange bowel things going on, I had NO choice and was told I would have this done. I am glad I did. I was told I had a form of colitis that with treatment, would reverse itself and NO Crohn's Disease! :woohoo:

And as I stated earlier, I was soooo nervous! For one I was scared of the prep, but figured it was no worse than what I had been dealing with by way of what had been going on it's own, lol - honestly the prep was easier than what I had been putting up with! :biglaugh: And I was terrified of having a procedure like that done! To top it all off, my doc that day was constantly being called into emergencies... I was scheduled to be there at 3 pm....I finally got "scoped" at 7:30pm.....talk about having lots of time to be nerved up!! :biglaugh: But, I explained ALL my fears to my prep nurse and to my anesthesiologist...they were soooo good to me!!! And I breezed right through!! The worst I felt was the "out of it" feeling for a day or so from the anesthesia. And I am sure those who have had the cysto w/hydro will tell you it wasn't nearly as bad as they thought it would be! ;) Even call your doctor and explain your fears to them and let them know!

All invasive-sorts of tests are scary to think about, and it's perfectly normal to be scared and nervous!!! But it's usually the fear of the unknown that scares us the most, I know it was for me as I had never had that particular type of thing done to me and didn't know what to expect. But I kept asking questions from people who'd had it done, and that helped a bit. But, it still was scary as I had never had it done! :biglaugh: And I kept in mind it was going to be a comfort to know once and for all what the heck was going on, and whether or not Crohn's was a factor to be dealt with...

As the rest have said, ultimately it's your decision. But I would have it done. Believe me, I wanted to cut and run just at the word "scoping" arghhhh! But my hubby was the biggest source of encouragement ever, and I enlisted one of my best friends too as the more the merrier to keep me calm!! We even had the nurses in the "surgery prep/waiting area " (my little room with my gurney/bed etc) poking their heads in saying we were having way to much fun, as we were laughing way too much!!! :biglaugh: Please just make sure you think it through thoroughly...... ;)

Hugs!

[isles]

You all are so special; thank you so much! I have never felt this much love from people I don't know! And it helps so much to know that my fears arent abnormal. So I can have my husband in with me during the 'procedure/test?' I wish I could have my best friend! She's one of the few people who can make me feel better but she lives in England :/; I guess you're right about my fears; I'm only 24, and I'm scared about having children, and other things. I just got married in March so I am also afraid of this putting strain on my marriage. There are just a bunch of things going through my head right now.
Well my doctor has me scheduled for an ultra-sound on Tues just to rule out the possibility of anything else; my pap was relatively normal, but she said I had a small cyst on my ovary that she wanted to check out through the ultra sound; also she thought it would be better to eliminate anything else before I got the cysto done so I have a few days to go before the cysto, I'm just trying to figure out what to expect and I'm already prone to infections; I've had non-stop uti's since last October and all my previous doctor ever did was give me anti-bios and tell me to go home and rest; so I don't think I could physically or emotionally handle another bad one. Okay enough babbling, thank you again for all your help; I'll keep you posted about the ultra sound and when the cysto is scheduled for.
Oh and pyridium has never worked for me! It always makes me nauseous and feel worse than I did before. I am on trimethoprin right now which I'm not sure about, I mean I haven't had a proper infection since August but the one-night/half a day ones have been coming back and forth. :bonk:

[traceann]

My hospital has a new surgery wing, with a nice new outpatient "holding" area! It was pretty neat. My own little room, with my own tv (I thought it was some kind of monitor and it was an LCD tv!! LOL). They got me in my gown, etc, and my IV hooked up, and what not. And that's where I waited. My bed was my gurney, so they just packed me up and wheeled me to the procedure suite just for "scopings", lol. When I got back to my little room, for recovery, my hubby and friend were waiting there for me! It was wonderful to have them able to sit in my little room with me and wait with me until I was wheeled away for the test. I swear we were almost obnoxious sometimes, but it certainly helped me to relax, well, as much as I could anyway, lmao!!!

Oh shoot, I am the biggest nervous nellie ever!! When I was 26 I had my two wisdom teeth pulled, and I was actually crying in the dentist's chair -- just from nerves! He even gave me a stuffed animal to hang on to...lol. When I got out of the chair, the back of me was drenched from sweating, lol. I am 36 and let me tell you, I too am afraid of giving birth!! Yeeeee-ouch! :)

Just remember, you can come here anytime, I am sure between us all we have experienced it all, as my friend Mo would probably call it, we've become a "collective" of useful (and some totally useless but fun) knowledge/experiences... No worries, vent rant, voice your fears, sometimes that alone helps tremendously!!!

Hugs to you!!!
Love,
T