Interstitial Cystitis

I got through my resection surgery pretty well (of course I never want to have to go through that again) (Dec 2nd) but when the pain med's stopped I started feeling achey- mostly in my stomach and back and even down into my upper legs.  I couldn't stand it and Tylenol didn't help at all, so I had to start taking Aleeve (I know this is a no no but I needed relief).  In the mean time I was having symptoms of Urinary Tract Infection- the last time it was pretty bad and the urine test came back negetive for any infection, so the OBGYN suggested I see a urologist.  I did, and now I have Interstitial Cystitis (they still have more test to run to eliminate anything else)  I go once a week to get catheterized and they give me a "bladder cocktail".  The first week it helped with some of the symptoms, but the aches were still there.  Last week was my second dose, and I got worse instead of better...I have really felt bad since then.  Monday I started to get it in the neck.  My muscles and joints are hurting along with the horrible achey feeling I have.  The aches are now all over and I started to run a fever last night. (Low grade).  I called the urologist and the nurse said I may have the flu.  Funny, that is a lot of doctors response to a lot of problems.  I don't feel nauseated or have thrown up.  This is scary when you know you don't feel well and everyone looks at you like you're lying and how could just being achey be that bad.  I was told awhile back that acheness is a part of crohns too, which I have had in the past but never this bad nor never for this long.  I have not had a follow up appt with my crohn's doctor yet.  I am going to call my regular doctor today to see if she can see me.   Has anyone else had this problem and if so, how was it treated?   Thanks for any help!!

Post Edited By Moderator (Nanners) : 1/13/2011 8:54:50 AM (GMT-7)

Thank you Nanners- now I see it! I went to my regular doctor and she sent me for blood work. They are checking on a lot of things, so hopefully something will show and they can give me whatever it takes to make me better.

I've had IC since I was a young child (one of those things I look back on now and see how prone to those fun immune disorders). I can remember in first grade running to the bathroom constantly at recess and just sitting there because of the pain. Finally some girls noticed and took me to the office. The doctors used to give me notes for the teacher to let me go whenever I needed to. But of course they were never that nice about it (one ordered me to go right then and there and never bother her again during class about it, yeah my Mom took issue with her).

But anyway, now days I don't get symptoms that often, maybe once a month. When I do I take the over the counter stuff that makes your pee turn orange. Relieves my symptoms in a hurry. They used to give it to me all the time at the doctors, back then it was just called Pyridium. I was SO happy to see it was over the counter now days. Anyway might be something to talk to your doctor about taking. It helps me when it flares up.