A good old fasioned vent

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Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/21/2010 7:27 AM (GMT -7)   
My GP sent me to my nephrologist yesterday for persistent UTI's .  So I told him what I have been dealing with over the last year. cycling Uti's, right side pain, fatigue and flu like symptoms. He said he had no evidence that they were actually UTI's because my urinalysis only showed mixed flora and that I should stay on Macrobid indefinitely and he would see me in a year (even though he wrote the prescription for 6 months) He mentioned it could be a fistula between my bowel and bladder or even cystitis.  He needs to actually see the urine under a microscope to determine what it is. Then why didn't he have me come in when I was having the UTI's instead of sending me to the hospital for a urinalysis and throwing antibiotics at me ????????  
 
At the end of the appointment as he was dictating his summary into his phone.... his last comment was " her Crohn's disease is keeping her thin and she looks great"  I rolled my eyes and sighed and he just smiled. I cried after the appointment from pure frustration. 
I feel like I am on a  roller coaster and I can't get off. I just want to see a light at the end of the tunnel. I go back to work next month and I don't want to be sick like I was last year.   Sorry for the vent, but I had to talk to someone that would understand my frustration.
 
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/22/2010 6:29 AM (GMT -7)   
I'm so sorry! I went throught the same things for many many yrs. I don't think anyone will know what it feels like to be so frustrated on not finding answers. Sometimes I think doctors believe we really don't care when most of us want ANSWERS!

Find another doctor! That's what I did for almost 20 yrs until I found one that was willing to find the answers I needed.

It worked but it was a long path to follow.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/22/2010 8:21 AM (GMT -7)   
Thanks for the reply Laurie. I take responsibility for not being more proactive. My doc told me I would be fine and could live to be 80 and not have kidney issues. I guess I hid my head in the sand and believed him. I felt good so I didn't question him. Now that I am feeling bad and not getting answers I finally have been asking for my lab reports. And come to find out my gfr is 53, my b12 is low and my hemoglobin and hemotocrit is low. No wonder I feel tired all the time. He was great with my dad all during his disease and transplant so that is why I have been reluctant to swtich. But I am making an apppointment with my GP so she can refer me to a new nephrologist.

Thanks again!
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


left forum.
Regular Member


Date Joined Jul 2010
Total Posts : 200
   Posted 7/23/2010 6:16 AM (GMT -7)   
Hey Elizabeth
I'm so sorry you have to deal with this!
i just wanted to let you know that when i was 12 i got bad abdominal pain and they thought it was my ovaries and all different things and then i got glandular fever and have had alot of different things caused by this pain wearing me down and i am so sick of it, i have had a doctors appointment pretty much every 2 weeks for the last year to try and work this out but they haven't been alot of help, my mum will suggest they do some things or what she thinks it might be but they just ignore and either leave it for a week or do a test they have already done and they just dont give us answers, it seems like they just dont care or want to give answers. i'm 15 and planning on doing medicine so have to work so hard at school to keep up when im sick and everything and i can understand how frustrated you must get because believe me i do too! i want to do medicine so i can be a doctor that actually helps and listens and explores :) its the worst feeling not getting the answers you want, or even just an answer or help from them, i have a new doctor now who i getting us a bit further so i agree with laurie i think a new doctor is the way to go. i hope it works out for you and if you need anyone to talk to or listen to you im here :)

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/23/2010 8:01 AM (GMT -7)   
Hi Buttercup,
You sound like an amazing person. It will be a great day when you graduate med school and help those in need. I think people who have been dealing with an illness make the very best doctors. I would be great if doctors would just listen and together come up with a plan of action with the patient. Often times I feel like they throw something at me just to get me out of the office when they are the ones that called me into the office to begin with. It is funny that before every doctor's visit I still get excited because I think it is going to be different. LOL


Thanks for letting me vent and I hope you get the answers to your medical problems very quickly. You are way too young to be dealing with illness. And I know how frustrated your mom must be seeing you in pain and not being able to help.

Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 7/24/2010 5:50 AM (GMT -7)   
OH Elizabeth!!! Sorry you have had to deal with such a bum(nicest word I could think of that wouldnt get edited. lol) ! I deffinatly agree with the others on seeing a new nephrologist! If only you lived in NC, I would get you in to see mine! He is a sweet heart, does everythign he can to help and get things fixed, and as an added bonus...good looking on the eyes :)!

Does your nephro run your Iron counts and D levels? If not...you need to get that checked. Especially with chronic kidney disease those 2 levels tend to fall very quickly. I will probably be on 50000 IU of vit D weekly for a very long time (already been 3 months with no improvement) and next week will be starting IV Iron. I was told with these two so low, no wonder why I have been exhausted and achy. So please get those levels checked...LOL, yes I am pushing this because i just got back from an apt yesterday and its fresh on my mind!

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 7/24/2010 6:48 AM (GMT -7)   
No he doesn't test my iron or vitamin D levels. I need to be more proactive and not trust everything my docs tell me. I haven't been letting my Mom go to my appointments because I didn't want to stress her out, but I think I'll take her to my GP appointment. She is a nurse and knows all the right questions to ask. She is also mean....LOL


Thanks for the replies. This is a great site, with great peoplel
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 7/31/2010 6:24 PM (GMT -7)   
Another thing you can do is research on your off time and print out information which your symptoms point too. I did this with my husbands doctor and we finally started to get pointed to the right doctors so he could ne dx'd.

I so hope you can find some answers. Its already frustrating enough to have the pain much less talking to walls in the doctors offices.

Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/1/2010 5:20 AM (GMT -7)   
My GI finally called me Thursday and set me up with B12 injections. If I wouldn't have called and asked him to review my blood work I know it would have never happened. My Crohn's is flaring now so I'm sure I will be on steroids again soon. I just hope the daily antibiotic keeps my UTI's in check.

Our beloved dog Teddy had to be put down last night because his stomach flipped. My whole family is devastated. He was the perfect dog and part of the family.
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 8/1/2010 11:00 AM (GMT -7)   
Oh Elizabeth, so sorry about Teddy! I know how hard it is too loose such an important family member. I pray you will find comfort in your decesion that had to be made! You did the right thing!

Glad to hear you finally got the B12 injections. Hopefully this will help you start feeling a little better and that your crohn's flair will be quick with the help of steriods.! Keep us posted on how you are doing! You have a lot going on right now and hope you can find relief quickly!
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran


If God brings you to it, he will get you through it!!

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/2/2010 5:18 AM (GMT -7)   
Elizabeth I'm so SORRY  rolleyes    If one of our dogs passed we would be in mourning forever shakehead
 
Laurie
Kidney Diseases and Disorders
Moderator



40 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 8/2/2010 7:20 AM (GMT -7)   
Have a kidney infection but am now on meds.so will be spiffy again in a few days......
SnowyLynne

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/3/2010 3:40 PM (GMT -7)   
Thanks Ladies! It was just such a shock to us because it happened so quickly. I know some people say "it's only a dog" but he was truly part of the family. The house feels empty right now but I am sure we will recover. It helps there is a lot going on in the next couple weeks. I start back to work tomorrow so I am praying my health with cooperate. Thanks for the support.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/3/2010 5:51 PM (GMT -7)   
It's never just a dog.!.!  My two dogs are like my arm and leg. For my husband they are his miniture best friends  yeah    I hope the shock will wear off so you and your family can grieve. sad
 
 
Laurie
Kidney Diseases and Disorders
Moderator



40 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

cbarrett56
New Member


Date Joined Sep 2010
Total Posts : 9
   Posted 9/3/2010 5:47 AM (GMT -7)   
to the memners with crohns diseaase: look into low dose naltrexone (LDN)- google this and crohns. many studies out there. LDN is a remarkable drug. Dr Berkson in New Mexico is one of the pioneers. Crohns responds particularly well, as does IBS, and autoimmune diseases.
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