WHY DON'T DOCS LEARN ABOUT ERNY???

I'm currently going thru test after test after test..........  Since my ERNY in Nov, I found that I have a Chronic Anemia...either my red blood cells are being destroyed or not produced for some reason, such as a Chronic Disease, yet UN-diagnosed.  I have started w/a Gastroenterologist/Liver Disease Specialist, because of PAIN I experience in my R abdomen, abdominal bloat/swelling.........  Had the Endoscopy and the Colonoscopy last week.  Have my 2nd appt w/a Hematologist next week.  Who knows who else I will see to get this all figured out and get my strength back again...I'm losing it.  At times I am able to face all this head-on... at present I am in the Depression Mode...  (esp since 1/2 hour after my colonoscopy I ended up extremely ill w/ chills and then a fever of 104... most probably the Flu...oink.)  But very depressed, nonetheless.  (And yes, I am on Tamiflu)

BUT my GRIPE is this:  Yes, doctors know something about RNY.  BUT... you tell them that you had an ERNY, and they look at you like you are SO STUPID... and like, "What's an ERNY???"  I have to be the one to TEACH them what it is, what was done, what it does, etc, etc, etc..... and one doctor looked at me and said, "Why in the world would you WANT to do that???"  Judgment (?)  !!!!! 

Then there was the attending nurse at the surgery center last week..... here is how it went.....

She asked, "So you're diabetic?" 

I said, "Technically, altho since my RNY, "no". " 

She asked, "Well then, what meds do you take for your diabetes?"

Me, "None."

Her, "You mean you are NOT treating your diabetes???"

Me, "Not since my gastric bypass operation 4 years ago."

Her, "But you NEED medication to treat this!"

Me, "I had a gastric bypass operation.  Since that time, I lost 140 pounds, relieving me of any need to treat a condition that is UNDER CONTROL by losing the weight!"

Her, "But all diabetics must treat their diabetes with medication!"

~~~
Surely, we who have been thru RNY, and us who have had the revision/ERNY, seem to be MUCH MORE KNOWLEDGEABLE about this than even those in the medical field???!!!  I just find it utterly distressing that even specialists, and esp those dealing with gastrointestinal issues, DO NOT. 

What do you all think???  Let's revolt!  :>)

Lizzy,
You can now google images for an extended roux-en-y and get a picture of it.  You might want to print one and show it to the Dr.'s.  This educating the Dr.'s get's old as they don't know how to treat us.  I think we need to tell themt to treat us like we have celiac disease as far as the malabsorption portion of the surgery.  Seems to work.

If you can't get a GI Dr. that knows what they are seeing, then find another one.  Some GI Dr.'s don't want to deal with us who have had any type of WLS as they feel it's too risky.  I am lucky to find one that at least has a backgroud in WLS as he used to do the EGD for a particular surgeon.

Hopinng they figure it out for you.  Any chance that the pain could be from scar tissue or a hernia that can't be felt?  Mine was scar tissue that was wrapped around the intestines and it didn't show up on any of the tests.  It wouldn't be the reason for the anemia, but could be some of the pain.  Hugs and hoping you get answers soon.
Deanne

My primary doctor knows little of Gastric Bypass. In the beginning my husband and I had to educate him. Now that I'm trying to go for a revision I tried to explain to him the difference between what I had and what I want. I suggested that he do a bit of homework on it and gave him a suggested list of websites he could go to. I really think that it would be good if he educated himself with the WLS options so that he could educate his overweight patients. Oh well.

Regarding diabetes. I cringe whenever I hear "my diabetes has been cured." The thing is, diabetes is not cureable, but it is treatable and manageable. Once you have it, you have it for life even though your symptom relieve themselves there is a possibiblity of it coming back as you age. I worked for a pharma company who's main focus was diabetes drugs, research and education. I had lots of conversations with the doctors regarding how having WLS seems to "cure" or relieve the diabetes. Several of the doctors cautiously call it a "possible cure for Type 2" but won't actually say it full on. There is a lot of research that is going on regarding why the Type2 diabetes seems to be relieved when WLS is performed (outside of weight loss) and a lot of excitement behind it as well. Maybe this will be the cure? I don't know. I'm not a researcher or a doctor. I don't even play one on TV. I'm just happy for those who suffered from it to have it relieved with WLS.

Oh, I DO agree w/you about the diabetes... I have bouts of rising sugars and then "norms" again.  I know that this is not a cure, but a management tool.  I mean, if we can gain the weight back, then surely the sugars will rise. 

You are evidently a patient educator yourself, in that you have spoken to your doctor.  I think that RNY is a more easily understood concept in the medical community, because it is so publicized. 

thanks a bunch for your comments...I truly do appreciate them!

:)

Hi Lizzy:

I am scheduled for ERNY on May 20th...And, I have had some issues with anemia, B-12 deficiencies and Vit D...I think I'm much better.

So many of your symptoms sound just like my own...I was feeling absolutely horrible...I will describe my symptoms, take you through the tests I received, and their findings.

Symptoms:

Dizziness-Aching-Tingling in the fingers and toes-Headaches-blurry vision-pain in the abdomen especially after any kind of pain medication-falling or feeling as if I was going to fall from an upright position-nausea-vertigo-memory loss-lethargic-weak....

Tests They Ordered:

*  Ultrasound for the carotids
*  Nuclear Stress Test
*  Colonoscopy
*  Endoscopy
*  MRI
*  Metabolic Panel
*  Glucose Tolerance Test

Results:

All tests normal except for Metabolic Panel....Severe B12 Deficiency, Severe Vitamin D Deficiency, Anema....

My PCP says, my B12 deficiency (which was under 150, therefore wasn't even showing on the charts) was causing the dizziness, the nausea, vertigo, pain and tingling, falling or feeling like I was falling and equilibrium loss, blurry vision...lack of B12 can give you permanent nerve damage.

He immediately started me on daily B12 injections for a month, then weekly, now monthly for the rest of my life. 2000 iu of Vit D, slow fe iron tabs...

Things are now somewhat back to normal. But, in reading everything I could about B12...I found it is the culprit to many illnesses, aches, pains, vision problems, memory loss, even beginning stages of dementia...There is a great book called "Could it Be B12" I've given it to my PCP to read as he didn't even know about a urinary test called MMA that better tests for B12 deficiencies. I guess the normal Serum blood test which tests for B12 can be misleading and not always give an accurate count. Sadly you can be deficient in B12 for a long time and sustain permanent nerve damage. Which accounts for tingling in the extremities, for pain issues, memory loss and dizziness...I believe I sustained some of that damage, as my B12 deficiency went untreated for a very long time...but I feel much, much better now.

Good luck to you and your research....Why is it we just assume our Dr.'s know everything, because they absolutely don't I get so ticked at the Dr.s where I live they won't even consider a revision surgery here because they say we should never fail the first. Can you imagine when they told me that, I wanted to hit them....Since I was going for a 3rd Revision....

I guess ignorance is bliss sometimes.

Hope you feel better, wish I could meet you when I come to Arizona!

I do have a question, knowing what you know now, Would you choose ERNY as a revision again?

 I hope they find what it is soon so you can move on and feel better...

Sorry I was so long winded!

Janie

                                                                                                                               

 

 

 

Janie:

You are asking me a TRICK question..... :)  Would I choose ERNY again??? 

Let me start off by saying that I am very COMFORTABLE with my current weight...143.  Some of my friends and associates say that I look EMACIATED!!!!!!!!!!!!!!  I object to that statement, because what they are seeing is this:  Yes, I lost 40 pounds in 3 months (these last 40, taking me from 182 to 143).  That is a very rapid weight loss.  My skin has had very little opportunity to conform to the "nothing left in it" visual effects.  I believe that this is what they are seeing... Not only that, as weak as I have felt for the past 3 months, I am pale, and have little muscle tone due to the anemia and subsequent inability to carry on an exercise program.

I was given the side effects 'list' by my surgeon:  Diarrea instead of real poop... Frequent stinky gas...  HOWEVER... I do not believe that the initial severity (at times) was understood, on my part.  I mean, how do you actually perceive what will be???  It's like a marriage, I suppose... you get what you get and unless you know the person fully, how do you know of the loyalty?  (silly???)  YES I have had diarrea and gas.  I would say that the first 3 months was the worst...and I would say that this is a bodily adjustment to the intestinal bypass.  There are times, tho, that making an unwise food choice makes these symptoms much worse, and I am FINALLY becoming wise in making better choices...MUCH less butters and oils, NO cheddar cheese (instead, mozzarella or jack), NO breads, pastas, rice, etc UNLESS it is a Tablespoon or two and STICKING TO THAT DECISION, for example: rich and thick spaghetti sauce (for me) gives me very RED and GREASY poop......hence, I may have to make another version that is more healthy for me.  There are times when I have been sick (virus) that having a piece of very toasted whole wheat bread (1 sl) and it agrees with me...it is a rarity, but sometimes it is what I choose.  SO, as far as knowing these "side effects" was my choice, and like I said, having a great deal of restraint is the key.  I am still learning. 

I will say this too, with each passing month, and for some reason at that "each monthly anniversary" since the surgery, there has been a change for the better.  At one month it was one thing...at two, another.....  At these 5+ months, I am finally seeing some poop that resembles some normal poop, altho soft.....  so my body is adjusting.  :)

I cannot for a CERTAINTY say that the Chronic Anemia is due to the recent surgery, or if it was a precursor to it all... I am meeting with my Hematologist next week after he reviews my 5-year history of labs from various doctors and hospitals.  From there we can make a decision as to where to go from there--what other doctors we should visit, such as a rheumatologist for a possible immunological disease.  From all other standpoints, my "innards" appear to be "healthy", altho choppy, so to speak.  :)  

And, I cannot say that I am ill now because of the surgery and its vitamin deficiencies or what............ it is the unknown and frustrating part of my life right now.  There are many out there who are doing very well w/the ERNY.  Weight-wise I am.  Perhaps I would have chosen to have the intestinal bypass portion less of a shocking-to-my-system length...still losing the weight altho maybe taking a little longer.... All of these things are fuzzy.  

This probably does not answer your question, but at least I am sorting things out here... like I said, lots of folks do very well w/the revision, and I have too.  The rest, for me, is a mystery... 

Please keep in touch, you may PM me from my profile.  :)

Hi. I just wanted to ask what they did about your Vit D & iron deficiencies.  You mentioned the b-12 shots, but did they do anything for the others?

I had my yearly labs done & my iron is severly low, as is my vitamin d.  I have an appt with my dr on friday, but I'm curious what she will offer/suggest for increasing these levels. 

I take all of my vitamins regularly.  

I'm not sure if your asking me "JRolfson" or Lizzy?

But I will answer your question from my experience.

I was put on IV Iron "16" treatments, 2 times a week for 8 weeks....That cured my iron deficiency pretty well...At the time I went in my hemoglobin was "3"....The Dr. said she didn't know how I was getting up and dressing in the morning...

It should be about "14"...I'm at "11" which isn't to bad.

I take 2000 iu's of Vit D daily....slow fe iron...sublingual b12 and weekly shots.

JRolfosn

Vit D is NORMAL. (w/my bariatric supplements) 
Iron is NORMAL.       "
B12 is NORMAL.       "


My Hematologist said that I do not need iron infusion treatment...but there is another reason for loss of red blood cells.

Hi Cassandra,
I take 20,000 iu of vit D a day and has brought my levels up.  I still take sublingual b-12 and has always been on the high side of the scale.  Iron  I take 29 mg and have been good so far.

I do take the dry form of the vitamins, they seem to work better.
Deanne