doctor frustration

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Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/21/2009 5:26 AM (GMT -7)   
I went to my nephrologist several months ago for a check up. I explained to him that I had been struggling with my Crohn's disease over the last year and that I was having a lot of right side flank pain. I wanted to know if it was was PkD or if I maybe needed to go on a stronger Crohn's med which dfinitely would alter my quality of life. He said if it was cysts causing the pain there was nothing that could be done. An ultralsound would tell him nothing he didn't already know. He suggested I go on Remicade infusions for my Crohn's. By the way, he never even examined my right side.
 
So I go to my GI yesterday. I told I was doing better but still had the right flank pain but had resigned myself to the fact that I would just have to deal with the pain.  When he did the examine and probbed the problem area (OUCH!) he said I had a mass under my right rib cage area. I was so shocked I didn't even ask him what he thought it was.  He put me on a more serious Crohn's med and told me to come back in 3 weeks. I am so confused.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 8/21/2009 12:48 PM (GMT -7)   

I don't know anything about crohn's meds, can they cause a mass?  If not why wouldn't he send you for a scan to see what the mass was?  Maybe it's time to seek new drs?  I've had 5 GI drs and I thought it was 5 urologist until I recounted and its been 6 of them until I finally have competent, compassionate drs.  There are great ones out there, you unfortunately have to keep searching until you find them.

I hope everything is okay and you feel better soon,

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/21/2009 3:32 PM (GMT -7)   
No the Crohn's meds don't cause masses. My GI put me on a type of steroid so hopefully it will give me some relief. I am making another appointment to see my nephrologist and demanding an ultrasound. I should have done that at my last visit. I need to be more pushy and demand answers. Thanks for the reply.

Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 8/21/2009 5:21 PM (GMT -7)   

Elizabeth,

What about your PCP, why don't you have him/her order a ct scan stat and go from there.  Your nephrologist didn't do anything for you the last time you were there.  I am only saying this because of all the things I have been through.  My last urologist almost cost me my life because he thought my syptoms were from my kidney stone removal and they ended up being the intestinal infection c diff.  By the time his office called me, they hadn't made the diagnosis but told me I needed to come to the hospital right away and have the rest of my colon removed ( I only have 2 inches) and have a permanent bag) .  I refused to go there and drove 3 hours to my GI and he scoped me & said my colon wasn't dead as my urologist had said & he took cultures & put me in the hospital.  I was so dehydrated that he couldn't sedate me for the scope and they could not get needles in the hydrate me.  The next day he called to say I needed to be in isloation because of the c diff and told my husband how close I was to death the day before.  So if your dr isn't doing anything for you; please find another one.  There is one out there that will help you.  I now have the absolute best urologist.  I ended up having 5 kidney surgeries in three mos but am now finally better.   I want you to get better too!

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/21/2009 7:01 PM (GMT -7)   
That is awful Judy. I am so glad you got the needed help in time.


When I started feeling bad last fall we thought it was my Crohn's flaring so my GI ordered a CT scan and a small bowel follow through. The resuts showed that it was normal for someone with PKD and having had a bowel resection. At that point my neph said he thought my pain was my kidney cysts and that there was nothing more I could do about it unless I wanted to go on pain meds. The pain isn't unbearable so I opted to grin and bear it.

Now it's hard to tell what is my Crohn's and what is the PKD. It seems when I flare that the inflammation must aggravate my PKD. So now I am working on getting my flares under control with some new meds. To tell you the truth I am just tired of being sick. The worst part is the fatigue and trying to work and take care of my family.

I will call my sister tomorrow and see if she can recommend a new neph. It is really tricky because the doc I have now is a family friend and also my daughter's neph. I know she won't want to change.

Thanks so much for you advice Judy.
Elizabeth
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 8/21/2009 8:21 PM (GMT -7)   

Elizabeth,

Ouch, your daughter's nephew?  Just say you that you really aren't feeling well, which you aren't and that you would like a second opinion.

I'll say a prayer for you,

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile
 
Am now down from 17 meds a day to 8 and VERY healthy:)
 
There's always hope and things will get better :)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/22/2009 6:01 AM (GMT -7)   
I meant he is also my 19 year old daughter's nephrologist. And I woud still have to see him when I go with her to her appointments.
Dx'd with Crohns 1984 and polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril,
 


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 8/23/2009 4:50 PM (GMT -7)   
Wow I have missed alot with working all my overtime the last couple of weeks.
 
Ok flank pain and detecting a mass?  Flank pain is common with PKD, cysts can bleed, break, tissue obstructions and KIDNEY MUTATION.  You really do need to call your nephews office and leave a message that you would like a scan of the mass.  He shouldn't even blink from the request.  You are the patient and you asking for a minor procedure shouldn't be a problem.  He would probably smile and tell his nurse to set it up.
 
It could be your kidneys are alittle swollen depending on what stage of PKD you are in.  I have pain all the time.  Its aching and annoying that it drives me crazy.  But I have no excessive growth going one just cysts breaking, bleeding and tissue passing.
 
I would feel so much better for you if you had a scan.
 
Laurie
 
And please keep us updated!
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........

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