Bad News!!!

[tommygal]

Well I thought this pain a little after my surgery was an infection, but its not!!!! You all that posted to my messege of the pains and problems I have had this last week, thought it was an infection, but went in yesterday and my urine is totally clear! I was ok the first few days after the cystoscopy, but it got bad a week after, could it just be the surgery causing it? Cause my IC and pain has never been this bad at all! And I'm on the diet, so can't think of anything at all I ate to bother it. The bladder pain and lower back pain have been really really bad! Sometimes worse than other, sometimes been getting so severe I almost have gone to the ER a few times this week. Could it just be a flare? I have tried everything suggested for a flare, but nothing seems to be helping. The doctor wasn't much help in what we could do for it. He did give me some samples of Prelief, so I'll take that with my meals see if it helps any. And next Monday I'm going to be starting the Elmiron. It's just not fair that I feel worse than ever after the surgery! It seems everything the doctors have done from the surgeries to medicin after medicine, all seem to make me worse! I really, really wish it was a infection!!!!

[vm]

Did they look at the urine under a microscope or did they just do the dipstick test?

[Ginny]

Great question VM. My thoughts exactly.

[tommygal]

Oh wow, I don't know. I've never even heard of the dipstick. All I know is they put me to sleep, went in with the cystopic thing, did the water retention thing, and also had took pictures. So from that do you know which one it was?

[ICNDonna]

I think what was being asked is when you went to be checked for infection, did they tell you immediately you had no infection? A culture takes at least 24 hours to "grow" anything.

You may still be feeling the aftermath of your surgery. Hopefully you'll feel better very soon.

Warm healing thoughts,
Donna

[liznazz]

I went in last week because I thought I had an infection. On a Monday, the doctor looked at the urine in the office (dipstick) and said crystal clear, although he did send it out to the lab. Wednesday, I got the call that I had no UTI. I started crying on the phone. I posted on the boards here, because I was sure I was having my first flare ( I was diagnosed in March this year). That same day, I went to his office to discuss pain meds, etc. He looked at my urine again; said it looked clear. Sent it out to the lab. Guess what? Today, the dr.'s office called... I DO have a UTI.!! So I just started an antibiotic. I hope your dr. sent the urine OUT to be cultured at a lab.... I insisted he did mine the second time and it did show a UTI. Good luck to you. :kiss:

[kraziestj]

[COLOR=Navy] :toilet: as of now i don't look at IC as the end of my life but a change to make me better. it's kind of like a detoxing of all the bad stuff we put in our bodies. Sometimes it's so hard for me because I look and I am only 21 but other times I am thankful because some people don't reach 21. change is good. it's hard at first that's for sure - it's hard but you gotta do what you have to even if you feel like dying sometimes. I know i sure have. I wanted to make a comment about the pop up room in a bag on the site. OH MY GOD I thought i was the only one who needed one of those things! I thought it was so cute and that it was something that only i thought of........AMAZING! I swear that is the item on this site that made me keep looking! LOL

JACKIE

[tommygal]

Oh, i see now. No he just told me right when I was there, don't think it was sent to the lap. I had my lap 12 days ago, and wasn't too bad the first week after, thats why its so weird that I've all of a sudden had these bad pains. I just barely got diagnosed, but we think I could have had IC since I was a little kid, just been getting worse and worse the last few years. My question is, something that hasn't bother me before, can it all of a sudden be bothering me after the surgery? And also if something didn't really bother me before, could it also now because I'm eating too much of it? Because I was looking at my chart I keep of the foods I wat everyday, and comparing to when I got the bad pains, and I think I know what is giving me the flare. It's honeydew! Been eating a lot of it lately, I think my bladder maybe couldn't take it anymore. Do you think this could be the problem?

[liznazz]

I would still ask that a urine specimen be sent to the lab for a culture test. It is very common to get a UTI after the cystoscopy. It is better than guessing, and a quick check at the dr.'s office can't really diagnose a UTI all the time (I'm a perfect example as my urine was "crystal clear" when the Dr. did a quick check, but after being cultured for 48 hrs. proved I had a true UTI. Hope this helps. liz

[lalarainbow]

Hi
When I had the cysto- hydro it made me a whole lot worse... I was one that it did not help and in fact caused a horrible flare... Get your urine checked for sure.....
Hope you feel better real soon...
~~Pam~~

[SheriG]

I know this is frustrating for you, but hold your head high, heating pad low, and remember, we usually get worse before we get better~ Not that I am wishing anything bad to happen, but sure do hope you are feeling better soon. If not, a jingle to the doc, or visit to the ER might help. Wishing you all the best!

[vm]

I do think that if your bladder is ultrasensitive/superinflamed either due to just the cysto w/ hydro or to a UTI on top of it, some foods that didn't bother you much before could really bother you for a time.

I would ask about a culture if you keep feeling bad. Two times I have had the in office dipstick test show no infection, but when they sent the urine off to the lab it did show infection. And even a tiny infection on an IC bladder, especially one that is inflamed from surgery, can cause big pain. :(

[tommygal]

Well it's not that easy for me to get to the doctor to get another urine sample checked. We live 45 min from the doc, and only have one car. I thought it might have just been the honeydew now I'm not quite sure, the pain is back and bad again. I was going to go somewhere for the next two days not sure I will be able to now. And I really need to go out, I'm going insane at home! Now I think I havea fever. Whenever it seems something good is going to happen for me it just seems to be shot down! I guess I'll just give up on being able to do anything in my life, or for anything good to ever happen for me.

[ICNDonna]

If you've been eating a lot of honeydew, that could be the problem. You might try taking some Tums and drinking lots of water. Sometimes that will help with a flare if it's food induced.

Warm healing thoughts,
Donna

[edc]

I know the cysto/hydro makes it worse before it makes it better. Have your symptoms gotten ANY better since the cysto/hydro? I have not had hydrodistention, just the cysto. I am taking Elavil (amitriptyline), and it's SO helpful with my symptoms. Have you tried it. Also, I was wondering how much the Elmiron costs? It takes about 6 months for the elmiron to start working. I have written a research paper on IC - please let me know if you would like to see it.

[kraziestj]

I had the cysto/hydro thing done in like may or so.....awhile ago. Symptoms just got worse and my bladder is super sensitive to anything. OMG! was that the worse burning in the world after that thing too. I coulda died.....i felt like I shoudla died. Elmiron is expensive (if you don't have good insurance) it runs around 203.00 for 90 pills in a bottle - for 3 pills a day. I haven't tried the anti-depresent drugs yet I am kinda scared w/ those cause I don't want them to change my personality or do anything else to my head. I just am kinda ify w/ them.

[tommygal]

Oh, great just lost everything I typed!!! Ok well I'll hurry and write a quick update, again, on whats been going on with me! Went in on Wed to have a urine sample taken for a 48 hr test for infection. They never called today, so guess I'll have to wait till Monday to find out the results. If I don't have an infection, I swear I'm just going to bawl and bawl! I don't know what else is wrong, and nothing I can do to help it at all! And I can't live with this bad of pain! Wednesday the pain was so bad, and nausea, that I threw up everything in me. Helped me feel better for a bit, at least help the pain somewhat, but man I ca'nt afford to loose anymore weight! I'm already hardly eating anything as it is! And the nausea been so bad it's hard to eat, plus my very strict diet in the way, diet for my IC and endo! But hopefully I will figure out what's wrong, and not stress too much over it, even though I already have been a ton the last week. The doctor was totally clueless what could be wrong with me! And my IC was never tihs bad before the surgery, I mean I have had a lot of pain and really sick for year, but I also have endo, and the weird thing is these weird sharp intense pains that go through to my back didn't come till a week after the surgery. But yeah, thanks for all the replies! I'll have to read them again sometime later, right now I gotta lay this poor body to bed! And sorry if I sound whiny, I don't mean to I just hurry and type whats on my mind so I'm not sitting here too long cause I feel too horrible too.
Oh yeah and I have'nt ate any high potassium foods for a few days now, but it doesn't seem to be helping...so guess thats not the problem.

[liznazz]

I feel so badly for you!! I replied before, but please call the office on Monday and make sure you get the results of the culture. My first result (last week) came back negative--and I did Bawl and Cry. I went in that day, insisted on a second culture, and that one came out positive. I am now feeling better after a few days on Ampicillin. Please hang in there, call Monday, or call and ask for an antibiotic to hold you over till you get the results. You shouldn't be in so much pain. I wish there was something I could do for you. All I could do is say some prayers and wish you well. Please let us know what the results showed. liz

[RedLione]

A person with IC shouldn't have to wait for a culture to get an antibiotic when they've ACTUALLY GONE TO THE EMERGENCY ROOM, especially if they have a regular doctor that knows them. How many times have I had to wait all weekend for a call from a doctor? That should be illegal when you're suffering. I miss my uro who gave me his home number! I hope you CALL someone or KICK someone (just kidding. Well, maybe not . . . ) Please, please feel better. I hope they find what's going on with you very soon.

[tommygal]

The 48 hour test came out negative again!!! So totally clueless what is wrong with me!!! But I can't live like that! And I can't live off pain pills forever! Plus in two weeks I got to stop taking them, cause I can't take them while on the Elmiron study!!! For 6 months!!!! And if this problem/pain doesn't go away by then don't know how I'm going to survive it! I know its nothing in particular I am eating, and trying to figure out if it is the endo, Ic, or something else! Thanks for your replies!

[liznazz]

Honey, hang in there! If you have to go for another culture, please do it!! Like I said before, I insisited on another culture, and it came out Positive; the first one did not!! I also purchased A product that you can find in the feminine product area or pharmacy that contains dipsticks you can check your urine with. It checks both white blood cell count and nitrates. You can see if the colors match the bottle which gives you a GENERAL idea of a UTI. It claims to be 90% acurate, and that's how I convinced my uro to redo my test. I don't know If I'm allowed to mention the name of the product, but you can email me at liznazz@aol.com if you want more info. I'm praying for you :kiss: liz