I need help (x-post)

Hi everyone!   This was my 3rd month since surgery.   As of this week, it will be my 4th hospital visit, 2nd ER visit, and doctors visits every week now for 12 weeks.   I am so sad, angry, disappointed and in terrible pain.   My last Duke hospital stay was this week.   I had to go to an ER near where I live.   They ended up packing me up in an ambulance and sending me on to Duke.   I have been dealing with kidney stones and last week, my Primary Care sent me for a CT scan, and it was a big one on my left side....it had not moved yet.   About one week later...this past Monday...the pain was unbearable.  I cried all during the night and laid on the ground just to help get my children dressed for school.   My surgeon says he cannot find anything wrong.  In fact, his nurse told me that this was not gastric bypass related and it must be Fibromyalgia.   I almost came out of my skin when she said that.   if she had ANY sort of idea of what Fibro is, she never would have made that dumb dumb comment.   You don't have constant nausea, blood in the urine, coffee grounds in your urine....extreme pain your kidneys, and abdominal pain that will take you to your knees.   He just told me that he didn't have any good answers for me.   Except try a Urologist, and the a Pain management clinic.  He also thinks that this is from my Fibro and IBS.    HOLY **** PEOPLE!! (excuse my expression), but, I have in such horrible pain for 3 months.   Today, I can hardly stand it.   The other option was for the dr. to go back in and do a "look and see"  but, he was scared that it will make my situation worse.    All of my tests look great.   What the heck?    I am not crazy...I am a sane, positive individual....but, all of these doctors are making me feel like I am going crazy. I just want to be with my husband three little children pain-free.   I know you are not doctors....but, if it were you...would you go back in for the look and see or wait a few weeks to see the other doctors.    I am terrified of  going back under....one....because I fear he will say nothing is wrong...and it is all in my head.   Second, I am scared ****less that this will make my situation worse.    But, I am in so much pain and I have no idea how I am going to manage a regular life while waiting these few weeks to see yet again 2 more doctors.    Everyone seems to be passing the buck.  I am in so much pain today that I feel like I could just scream!!!    I don't know if I should call the doctor and tell him I just can't handle the pain anymore, or tolerate it for the next few weeks on just Tylenol.   None of the docs want to give me pain medicine, because they are worried about my bowels being slowed down...so, through out this whole pain...it has been Tylenol and positive thoughts.     HELP ME !!  I feel like I am going out of my mind!!! Caroline

First, let me say that I hope you find some answers soon and relief from your pain. Have you actually submitted an urine specimen to a urologist that has blood and matter in it and had him say it is Fibro?  Seems crazy that you can have blood (or worse) in your urine and it wouldn't--at the very least--be a sign of a rather bad bladder or kidney infection. If it's from the kidney stone, did you pass that yet and what do they think you should do if you have not? Doctors can make mistakes, too, so I would not just take one doctor's word for what is causing my pain if he can't show me an x-ray or test and is tossing around possible other ****reatable) causes like Fibromyalgia and IBS. Doctors know medicine--BUT YOU KNOW YOUR BODY and only you know how much pain you are in. I don't know a thing about fibromyalgia except that I have friends with it and even your skin can hurt, but I do know I will not undergo surgery of any kind unless I get a second opinion. I'm unsure in your post which doctor is worried that surgery will make "your situation" worse. Which situation: the pain and bloody urine situation? the fibromyalgia situation? Or your recent weight-loss surgery? You also say that they mention IBS, which I have, too, but you shouldn't be getting that kind of pain with IBS. Crohn's Disease, ulcerative colitis or something like that, yes, but not IBS. Why are they saying you have "nothing wrong" when you said you are still trying to pass a kidney stone? Did you pass this yet? Which surgeon is it that cannot find anything wrong--your weight loss surgeon or the surgeon who is thinking of doing a "look/see"? Or are they one and the same? As you can see I found some of your post confusing but I feel that is because you are so upset and in so much pain. I can only say, you MUST tell your doctor(s) everything, including the pain situation and if what he says doesn't make sense, you have to tell him it doesn't and that you are confused by his answers. It's your body and you have a right to ask for answers and help. That's what you're paying him for. If he doesn't know what's wrong and wants you to see someone else then you have to let him know you can't stand the pain like this for 2 more weeks. Period. So seeing someone else in 2 weeks is certainly not a case of him being helpful. Doctors can cut through red tape and if you make it clear how dire it is, he should be able to get you to see a specialist before that length of time. Blood in your urine combined with pain and nausea is a very serious situation that should be dealt with promptly and 2 weeks is not going to cut it. Hope you can get some help soon and I'll keep you in my prayers.

Hey Lori, I realize that my post was rather confusing.   Mainly due to the fact that my pain is off the chart right now.   I had found the blood in my urine, went to my PCP....had blood in there too.  She has told me that there are no infections.   She thought it was coming from a kidney stone.  Then, my PCP sent me to do a renal x-ray.   There was  a large stone on my left kidney.   Then, towards the end of the week, I had really bad pain.   My pain is typically under the bra line and abdomen, mainly towards my bladder.    Then, I passed what looked to be a lot of coffee grounds.   My PCP didn't seem to concerned.   She told me that I should call my Surgeon AGAIN to see what he thinks.   I went to my Gastro and he has been running test after test to see if there was a problem with my colon.  He did say some areas were swollen.   But, he blamed it on surgery.    I went to my OB for the bladder pain...she said go back to surgeon.    I have talked to my surgeon and have seen him on numerous accounts.     For dehydration, pancreatitis, constant nausea, and chronic pain.     Some times, my levels from kidney or liver or pancreas are really high.   Other times, like this last one....all tests came back looking good.    He (my surgeon) felt that either he goes back in to see what might be going on.   He is concerned that it will cause me more pain.   OR wait for several weeks to get into a urologist and pain management clinic.    My point was,  I don't know how to handle the pain.    My surgeon feels stumped because there are no "scientific" evidence as to why I would be hurting.  So, he said that it could be related to my Fibromyalgia and IBS.   I was dumbfounded that he would blame all of this on that.   Anyway, I hope I was a little more clearer.   Apologize for any confusion. Caroline

Caroline if you are having to wait several weeks to see a urologist you need to find one that you can see sooner.  I work for a urology group -- your pain/problems sound a lot to me like they are coming from the kidney stone.  I am not a nurse or a doctor but that is what it sounds like to me...Hope you find resolution soon! Mary

Caroline, My heart aches for you. No you are not crazy I belive everything you are saying. I dont know if it is possible but could you get another opinion from somewhere else? Maybe I am biased but my surgeon at UNC I think the world of him and his team is fantastic.If possible you could have all your records faxed somewhere else. I do so hope you will get some help very soon.                                              Love & Light,                                                 Annie

Annie, My husband and I have talked about that.  But, I am not sure insurance would cover that.   That is my only fear.     Thanks for the advice!  I did hear great things about UNC.   Caroline

Oh Caroline!  I am so sad to hear this news!  I was so hoping all this mess had passed!  How on earth can your surgeon say there is no scientific explanation for your pain when you have an x-ray showing a kidney stone?  Yes, walk away from that cretin and DO get to a urologist, but get to one NOW rather than wait 2 weeks in this state!  Ask your PCP to intervene on your behalf with a urologist.  The coffee grounds in the urine is probably old blood from the kidney stone.  If it's a large one, it's unlikely it passed on its own. You need an advocate.  You are in too much distress and pain to be handling this on your own.  If your PCP can't get on your team, then get another PCP who can get you an appt asap with a urologist.  You at least need to be on some kind of med, either to treat the kidney stone or the pain or both.  Enough is enough!  These surgeons are such a disappointment to me.  They do the surgery and then send you on your way with nary a thought of what side effects their work may have set in motion.  They are so narrowly focused on their incision area and wash their hands of anything else if it isn't directly and undoubtedly related to the surgery.  Check with your hospital to see if they have any sort of patients' advocacy service they can recommend.  Get on the phone NOW with your PCP requesting a callback and let your PCP know how much you are suffering and how much you need to see a urologist NOW.  This is outrageous! PM me for my phone number if you want to vent on the phone or if I can help in any other way. Please keep us posted.  My love and support are being sent your way.

Caroline I am so very sorry this continues to happen to you.  I wish I could wiggle my nose and not only make you feel better, but come and give you a great BIG ((( HUG )))!!  I can hear your pain in your words and I can't believe this is happening to you.  I really agree that you shouldn't wait 2 weeks to see a uroligist.  Try tomorrow to get your PCP involved.  If that don't work.... ask for another Dr. to get involved.  Again, I am so so sorry.  We are here for you on the forum and although I am far away, please know I am thinking of you and saying prayers that you will get some relief and answers soon. 

Connie

 

Caroline,      I am so sorry that you are still going through this. I have no advise to offer besides what the others have said, but know that you are in my thoughts and prayers.  I hope you find out what is wrong soon and that it gets taken care of. Love to you, my friend, Mare   

Caroline -

I'm not sure why they think it will take 2 weeks for you to be seen by the urologist. If the urologist that you have been referred to isn't available, get other referrals. If your PCP can't help you with it and you need some help make phone calls to get you in with someone, let me know and I'll see what I can do to help. 2 weeks is unreasonable when you are in constant pain. I'd also go ahead and see about talking to the pain management clinic if necessary, not because it's FIBRO, but hopefully they can help find some pain management that will help you in the meantime.

I'll give you a call later this evening.

((((Hugs)))),

Barb