Guts, kidneys, hearts, oh my!

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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/15/2008 9:45 AM (GMT -7)   
Hello friends,
I saw my friendly neighborhood kidney specialist yesterday after having a 24-hour urine test done. He said I am producing way too little urine in a day. I said something to the effect of, "Big surprise - all of my fluid comes out the other hole!" As much as I hate to admit it, I think the D is getting worse lately. It was better there for a while; I mean, relatively speaking. He said the protein in my urine is still about the same, so at least I haven't progressed to stage III renal disease. I will be getting it re-checked in three months. I am relieved that this proteinuria isn't bad enough to warrant a biopsy just yet; I am wary, lately and justifiably, of the needles that are bigger than my face.

He again mentioned that I should see an infectious disease doctor. Ho-hum, ho-hum. I wrote something to my ethics professor a week ago about patients who are chronically ill and have yet to find an answer to their problems. I said something like, "At what point does the diagnostic process actually begin to harm the patient more than the disease process itself?"

There's my question to you. Ponder that for a while and let me know what you come up with. Peace out, buddies :)
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 4/15/2008 10:13 AM (GMT -7)   
Sarita, I am firmly of the belief that some populations are scandalously over-diagnosed, and over-medicated. And in the meantime, their quality of life measures are no better or worse than those populations who are served by a health system that still believes that the patient history is the starting place for diagnosis and treatment, not just a necessary evil that has to be borne before the next test is ordered.

In the epidemiological world it is widely accepted that every test presents the possibility of discovering benign abnormalities. Chasing the causes of these benign anomalies often diverts attention from the true problem (patient history), wastes valuable resources, and exposes the patient to the risk of harm. Meanwhile the key to unravelling the health mystery (the patient history) is lost in a forest of reports.

How many on this forum can tell a story about the physician who has interrupted you within 30 seconds as you're beginning to explain what is wrong? The statistical average is actually 18 seconds. That's how long, on average, physicians wait to interject as patients try to give their histories.

In the meantime, Sarita I'm very sorry to hear of your cascade of health problems. Is there a message that maybe you are not willing to hear? I know that you have a huge investment in being strong and well. What would happen if you just stopped everything long enough to really feel how you feel, healthwise? These really are questions, not judgements. I don't know what your situation is, and I am really interested in your perspective. I do note, however, that you appear to be suffering from chronic dehydration. That might be a good place to start with your self-assessment.

Hugs from the heart

30+ years living with Crohn's.

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 4/15/2008 10:20 AM (GMT -7)   
wow, good point. that is why I have decided to fully focus on symptoms and give up on a diagnosis. worrying, testing, medicating was just getting to be too much for me. I feel far better now and will tackle whatever comes when it comes.
that said, you HAVE to pay attention to symptoms that are dangerous or depilatating...balance is all we can strive for.
I wish you could find the end of this rollercoaster, Sarita!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 4/15/2008 5:41 PM (GMT -7)   
have not hit maximum endurance threshold is to hoping we never do...
Crohn's Co-moderator

We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 4/15/2008 6:36 PM (GMT -7)   
Yes. The best GI I ever had relied on my history & current symptoms. He in fact, took great pains to be thourough. Came up with CD instead of UC ( which everyone in my support group already thought my dx was wrong..). I accept this dx though others don't. Its consistent with Crohn's ( late growth spurt & glommerulonephritis amongst others). All the tests do is say I have IBD, not which one.
Heck Sarita, I was almost subjected to vivisection when I had the bladder stricture. Every test imaginable ( From a very experienced Uro too) & NO answers. Well, until he focused on my ACTUAL symptoms: Bladder spasm & frequent urination. NOW that test I could have lived without. Being awake for a cystoscope makes colonoscopy a breeze!!


Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 4/15/2008 8:23 PM (GMT -7)   
I agree - my current GI LISTENED to all my symptoms and started me on Asacol before he completed testing. My wedding was months away and I wanted to make it through the ceremony. I had just moved to a new state and was so happy to finally be taken seriously. I still had lots of tests but thought they were all justified. He is also very reasonable. My GERD has been bad lately and he was going to do another scope to see if I had an ulcer. At the same time he had me start a new med. I asked what he would do if I did have an ulcer and he said "well see how that med does." So I asked, can we just see how the med does then if that is the treatment either way?? He agreed and said it didn't really matter but if I didn't get better he would need a look. I totally agree with that!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 4/15/2008 9:18 PM (GMT -7)   
Good point. I dont reall have a good answer, but I can say without a doubt that even when they told me I had crohns and there was no cure, I was relieved just because I was at the limit of what test I thought I should take before saying no to more.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

Veteran Member

Date Joined Mar 2005
Total Posts : 2486
   Posted 4/16/2008 1:44 AM (GMT -7)   
Bell - you should've been a psychiatrist! I like the way you think. Yes, there are lots of things I don't feel like I'm willing to fully "hear," and I realize that with how much I have invested in my education, I really need to focus on being the healthiest person I can. I don't know if it's a sense of hopelessness, uncertainty, rebellion, anger, loss of motivation, ignorance - probably all of those things, if we're being honest here - that is keeping me from being as proactive and assertive as possible.

Sometimes I feel like a mouse that has studied mousetraps my whole life, knows all of the interesting ways those traps work, knows the physics and the mechanics and everything, and then one day just walked right into one myself...and now that I'm stuck in it, it's like all that knowledge I had/have just vanished. It's hard to keep your wits about you when you're stuck in a very uncomfortable contraption like that.

I have plenty more to respond to, and Snipes, Fitz, Matthew and Navy and Yoga, my good friends, I appreciate your thoughts. You guys make me think more than any of my silly classmates, that's for sure. But if there's any hope that I will get up in time for class tomorrow I better haul my arse to bed for now!
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 4/16/2008 4:04 AM (GMT -7)   
Just imagine what a gift you (your patients) have been given, Sarita. The gift of insight is always as precious as the gift of knowledge. Knowledge they can give you and you can learn. Insight you have to experience. You just need to find how to balance resistance with acceptance. Both qualities are ok when they are in balance.

You are an inspiration.

30+ years living with Crohn's.

Veteran Member

Date Joined Mar 2007
Total Posts : 1642
   Posted 4/16/2008 7:33 AM (GMT -7)   
Sarita, I agree with Belleenstein your patients will be really lucky!
I think I have a great doctor because we have put off some testing because he says he would just change my meds anyway so instead of a testing me more he just changes my meds along with the symptoms.
I do think some Doctors test too much my Rheumy does that and then nothing comes from the darn tests and I still have joint pain, back pain and stiffness and even hand numbness... I am not taking anymore tests from him cause he does not change my treatment.


Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...

Veteran Member

Date Joined Nov 2007
Total Posts : 4389
   Posted 4/16/2008 2:44 PM (GMT -7)   
Hi Sarita,
I don't have any profound insight to share...just sending you hugs and wish you'd get well!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics

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