ERNY Complications
I am almost 1 year out from my ERNY. Sure I was told about nutritional deficiencies and all that. We all have. But no one seemed to know what those things would lead to. Is it as easy as "taking a vitamin"? I say NO. And, from what I have read (or NOT read), there is very little to be found as regards to the complications of this surgery. Why? Because it is too new. There have not been enough studies to come to a conclusion.
ERNY requires a great increase in protein consumption. I eat 120-180 grams of protein a day. None of this has increased greatly in my ability to absorb much of it. How much more CAN I eat? How much should I eat? I eat CONSTANTLY...just ask my husbands and workmates... Literally, I eat every 1/2 hour - hour. Still am losing weight. The con: edema from lack of protein absorption.
ERNY restricts the absorption of fats. Sure that sounds like HEAVEN. I can eat fat if I want to, but with diarrhetic consequences!!! So I avoid it. BUT, and here's the BIG BUT: It also restricts the absorption of FAT SOLUBLE VITAMINS, namely D, E, A, K. I am currently severely deficient in all of them, and up to 100K of Vit A, 300 iu of K, and taking a dose of D as well as sitting in the sun daily. NONE of this has led to an increase in my levels.
In addition to the fat absorption, yes I have lost the weight... HOWEVER...I have lost so much fat off my body (with the exception of tummy fat...) that my arms show all my veins and bones-- I have no fat to cover them. I am cold all the time. The circulation in my hands is compromised and I have now developed Raynaud's...can't go into a grocery store without (practically) having to wear gloves because my fingers turn white, the circulation stops, and they grow entirely numb. My hair looks dry all the time.
MOST IMPORTANTLY regarding fat soluble vitamin absorption: These vitamins are REQUIRED for healthy bone marrow operation. You know what bone marrow does: MANUFACTURES stem cells which manufacture red blood cells...Hey, we all need BLOOD. However... without proper absorption of these fat soluble vitamins, our red blood cells become INfragile, and can cause them to rupture prematurely. This is what has happened to me. I now have Hemolytic Anemia... my iron level is fine. I have normal B-12 levels. Ferritin is ok. But my RBCs are being destroyed, and this is leading to extreme fatigue, lightheadedness/dizziness, vertigo, and all the other things anemia causes. I have developed increasing Petaichea (sp?)... tiny pin-head hemorrhages into the skin. My eyesight has decreased due to bleeding into my retinas. I have hearing loss in both ears now.
Then there is the DIARRHEA. Prior to surgery, I was informed that it would last only 6-8 months, then would stabilize. I am 11 months out, and let me tell you THIS IS NOT TRUE in my case. I have anywhere from 10-20 episodes of diarrhea DAILY. Some are so urgent that I do not make it to the bathroom...during the day or during my sleep. My sex life has seen better days--after all, who wants to get romantic when you will crap the bed during sex? And it gets better: this has led to DEHYDRATION. Drinking water can be tricky, especially when eating every hour or so.
Have you ever been BLOATED? Until you have had an ERNY you haven't. Much of eating after an ERNY is tricky. Trial and error. Even the simplest consumption of proteins and fruits and veggies that you are used to eating after an RNY may not work any longer. The bloat is incredible! I can go from appearing relatively 'flat-tummied' in the a.m., to looking 15-months pregnant by bedtime...the bloat literally pushes out my belly button! This is highly uncomfortable. For the first 6-7 months after my ERNY I LIVED on Gas-X and/or Beano, as well as Immodium. NOTHING WORKED! And when you need to relieve that bloat, don't be around anyone you even hate...the smell is putrid! Even burping tastes like poop sometimes.
Prior to my RNY, I was a Diabetic...dependent on Insulin and Pills. NOW I cannot keep my blood sugars UP to 80! Lack of absorption has disabled my body from getting enough nutrition to adequately sustain a decent blood sugar. Blood sugars drop to a dangerous 45-55, and I am nauseated much of the day.
I am seeing a Hematologist for my Hemolytic Anemia. I am seeing a Gastroenterologist and an Endocrinologist (at Mayo Clinic...both are experienced at treating patients with bariatric surgical complications). My hematologist wants me to begin PTN: Nutritional feedings via a PICC line which I will have to keep in my chest. This may be necessary. If not, and when I totally lose the fat on my body, I have been told that these deficiencies will then begin to destroy my organs. After that, there is nothing left...after the blood is affected and then the organs... There is not enough small intestine left to absorb ANYTHING (2.5-3 feet out of the existing 25 feet given at birth). I had a barium x-ray, which was supposed to last 2 hours. After 5 minutes the doctor looked at me with horror on his face--the test was DONE...with the small amount of small intestine left, there is a problem for me.
In September I had to stop working. It became too physically difficult to last even an hour into my day.
And, I am being told now that I need a reversal of my ERNY in order to survive. I am angry over all of this. My life has been put on hold. I was told last Spring that I was "non-compliant" in my diet, and this is why all the excess problems. But this is simply NOT the case. I am extremely compliant!! I was also told that I must have an Anemia of "Chronic Disease"... The only thing chronic about my situation is that I am NOW chronically ill. If I had not gone to the Mayo Clinic, I am sure I would have continued to deteriorate...I am truly thankful for the doctors there and the research they have done.
This is where I am at this point. I am thankful to be here to say this much. Hopefully I will be able to update this in a couple of months and have some resolution to some of the problems.
PS: Oh, and the weight shown on the chart below is INcorrect...I am now at 133.
ERNY requires a great increase in protein consumption. I eat 120-180 grams of protein a day. None of this has increased greatly in my ability to absorb much of it. How much more CAN I eat? How much should I eat? I eat CONSTANTLY...just ask my husbands and workmates... Literally, I eat every 1/2 hour - hour. Still am losing weight. The con: edema from lack of protein absorption.
ERNY restricts the absorption of fats. Sure that sounds like HEAVEN. I can eat fat if I want to, but with diarrhetic consequences!!! So I avoid it. BUT, and here's the BIG BUT: It also restricts the absorption of FAT SOLUBLE VITAMINS, namely D, E, A, K. I am currently severely deficient in all of them, and up to 100K of Vit A, 300 iu of K, and taking a dose of D as well as sitting in the sun daily. NONE of this has led to an increase in my levels.
In addition to the fat absorption, yes I have lost the weight... HOWEVER...I have lost so much fat off my body (with the exception of tummy fat...) that my arms show all my veins and bones-- I have no fat to cover them. I am cold all the time. The circulation in my hands is compromised and I have now developed Raynaud's...can't go into a grocery store without (practically) having to wear gloves because my fingers turn white, the circulation stops, and they grow entirely numb. My hair looks dry all the time.
MOST IMPORTANTLY regarding fat soluble vitamin absorption: These vitamins are REQUIRED for healthy bone marrow operation. You know what bone marrow does: MANUFACTURES stem cells which manufacture red blood cells...Hey, we all need BLOOD. However... without proper absorption of these fat soluble vitamins, our red blood cells become INfragile, and can cause them to rupture prematurely. This is what has happened to me. I now have Hemolytic Anemia... my iron level is fine. I have normal B-12 levels. Ferritin is ok. But my RBCs are being destroyed, and this is leading to extreme fatigue, lightheadedness/dizziness, vertigo, and all the other things anemia causes. I have developed increasing Petaichea (sp?)... tiny pin-head hemorrhages into the skin. My eyesight has decreased due to bleeding into my retinas. I have hearing loss in both ears now.
Then there is the DIARRHEA. Prior to surgery, I was informed that it would last only 6-8 months, then would stabilize. I am 11 months out, and let me tell you THIS IS NOT TRUE in my case. I have anywhere from 10-20 episodes of diarrhea DAILY. Some are so urgent that I do not make it to the bathroom...during the day or during my sleep. My sex life has seen better days--after all, who wants to get romantic when you will crap the bed during sex? And it gets better: this has led to DEHYDRATION. Drinking water can be tricky, especially when eating every hour or so.
Have you ever been BLOATED? Until you have had an ERNY you haven't. Much of eating after an ERNY is tricky. Trial and error. Even the simplest consumption of proteins and fruits and veggies that you are used to eating after an RNY may not work any longer. The bloat is incredible! I can go from appearing relatively 'flat-tummied' in the a.m., to looking 15-months pregnant by bedtime...the bloat literally pushes out my belly button! This is highly uncomfortable. For the first 6-7 months after my ERNY I LIVED on Gas-X and/or Beano, as well as Immodium. NOTHING WORKED! And when you need to relieve that bloat, don't be around anyone you even hate...the smell is putrid! Even burping tastes like poop sometimes.
Prior to my RNY, I was a Diabetic...dependent on Insulin and Pills. NOW I cannot keep my blood sugars UP to 80! Lack of absorption has disabled my body from getting enough nutrition to adequately sustain a decent blood sugar. Blood sugars drop to a dangerous 45-55, and I am nauseated much of the day.
I am seeing a Hematologist for my Hemolytic Anemia. I am seeing a Gastroenterologist and an Endocrinologist (at Mayo Clinic...both are experienced at treating patients with bariatric surgical complications). My hematologist wants me to begin PTN: Nutritional feedings via a PICC line which I will have to keep in my chest. This may be necessary. If not, and when I totally lose the fat on my body, I have been told that these deficiencies will then begin to destroy my organs. After that, there is nothing left...after the blood is affected and then the organs... There is not enough small intestine left to absorb ANYTHING (2.5-3 feet out of the existing 25 feet given at birth). I had a barium x-ray, which was supposed to last 2 hours. After 5 minutes the doctor looked at me with horror on his face--the test was DONE...with the small amount of small intestine left, there is a problem for me.
In September I had to stop working. It became too physically difficult to last even an hour into my day.
And, I am being told now that I need a reversal of my ERNY in order to survive. I am angry over all of this. My life has been put on hold. I was told last Spring that I was "non-compliant" in my diet, and this is why all the excess problems. But this is simply NOT the case. I am extremely compliant!! I was also told that I must have an Anemia of "Chronic Disease"... The only thing chronic about my situation is that I am NOW chronically ill. If I had not gone to the Mayo Clinic, I am sure I would have continued to deteriorate...I am truly thankful for the doctors there and the research they have done.
This is where I am at this point. I am thankful to be here to say this much. Hopefully I will be able to update this in a couple of months and have some resolution to some of the problems.
PS: Oh, and the weight shown on the chart below is INcorrect...I am now at 133.
Lizzy,
I am so sorry to hear you are still so ill. All I can say is I will keep you in my thoughts and prayers!
Keep searching, you will find the answers!
Much love!
shele
LiFeLoNg hEaLtH iS mY GoAl
RNY 5-11-04 280
Lowest weight 174
Highest re-gain 238
erny 3-23-09 (120 common channel
low post revision 190
Current Weight 204
Height 5'6"
GOAL 154 Normal BMI
Lizzie,
I have no words of advice to offer you as I was just newly revised to ERNY with a common channel of 90 October 9, 2009 and have experienced none of the issues that you speak of except minor gas the first few days after surgery and it has since gone away.
Thank you for sharing your experience.
I just wanted to write and say that I will keep you in my thoughts and prayers.
I have no words of advice to offer you as I was just newly revised to ERNY with a common channel of 90 October 9, 2009 and have experienced none of the issues that you speak of except minor gas the first few days after surgery and it has since gone away.
Thank you for sharing your experience.
I just wanted to write and say that I will keep you in my thoughts and prayers.
Teena Adler
Facebook Contact Info/Email address:Skyedan[email protected]
10/09/09 - Distal Gastric Bypass (ERNY) Revision - Common Channel 90
"Never Let People,Places,Or Things Stand In Your Way Of Fulfilling Your Goals And Living Out Your Dreams." Teena Adler
Facebook Contact Info/Email address:Skyedan[email protected]
10/09/09 - Distal Gastric Bypass (ERNY) Revision - Common Channel 90
"Never Let People,Places,Or Things Stand In Your Way Of Fulfilling Your Goals And Living Out Your Dreams." Teena Adler
Why don't you consult with Vitalady michelle? She has a distal RNY.
Also, you may ask for help and information at the Duodenal Switch forum. They are distal and know how to handle the malabsorbancy in a positive way.
Good Luck. I know that you can get to feeling better. Don't give up. You may need some digestive enzymes to help with absorbtion or some pro or anti biotics.
http://www.vitalady.com/
Also, you may ask for help and information at the Duodenal Switch forum. They are distal and know how to handle the malabsorbancy in a positive way.
Good Luck. I know that you can get to feeling better. Don't give up. You may need some digestive enzymes to help with absorbtion or some pro or anti biotics.
http://www.vitalady.com/
3/30/2005 Lap Band installed 12/20/2010 Lap Band REMOVED
6/6/2011 Vertical SLEEVE Gastrectomy
One clue was in the first it. You try to EAT a coupla hundred g of protein? You can't absorb food protein! It has to be a supplement, in which the process of breaking protein back into amino acids has begun.
WHICH A, D, E, K, and which iron?
How much common channel?
Mine is 100cm and my first year was my year of knowing what sharts were and the phrase, never trust a fart. However, that all ended abruptly at the 1 yrs mark and I went (or didn't went, more accurately) the OTHER way for 11 yrs.
You might be able to come back from this. Don't give up yet!
WHICH A, D, E, K, and which iron?
How much common channel?
Mine is 100cm and my first year was my year of knowing what sharts were and the phrase, never trust a fart. However, that all ended abruptly at the 1 yrs mark and I went (or didn't went, more accurately) the OTHER way for 11 yrs.
You might be able to come back from this. Don't give up yet!
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
I did not say a couple of gr of protein...I said 120-150. All recommended by MY DOCTOR and his NUTRITIONIST. Also this includes liquid protein (aminos). I also take bariatric vitamins. My inability to absorb is not due to my inability to comply with what was recommended.
Regarding "sharts"... I know what that is. I suffer from outright continual diarrhetic stools...not sharts.
I am not willing to see how long my red blood cells continue to be destroyed due to this malabsorption...or how low my hemoglobin/hematocrit can go for the sake of "waiting it out"... it has also affected my bone marrow. Would you toy with this? I am seeing a hematologist who deals with high-risk complications and he recommends PTN via IV. I'm not willing to rely on having a PICC line inserted in my chest for an unknown period of time for the sake of seeing if and when I 'might' begin to improve. I am at the point where I MUST get this reversed. I cannot work secularly any longer at this point, and really, would not consider NOT getting this reversed. I'm not willing to leave my husband a widower because of a possibility of "coming back from this". Please understand my frustration and anger at this point...but it's not as important as my life.
Regarding "sharts"... I know what that is. I suffer from outright continual diarrhetic stools...not sharts.
I am not willing to see how long my red blood cells continue to be destroyed due to this malabsorption...or how low my hemoglobin/hematocrit can go for the sake of "waiting it out"... it has also affected my bone marrow. Would you toy with this? I am seeing a hematologist who deals with high-risk complications and he recommends PTN via IV. I'm not willing to rely on having a PICC line inserted in my chest for an unknown period of time for the sake of seeing if and when I 'might' begin to improve. I am at the point where I MUST get this reversed. I cannot work secularly any longer at this point, and really, would not consider NOT getting this reversed. I'm not willing to leave my husband a widower because of a possibility of "coming back from this". Please understand my frustration and anger at this point...but it's not as important as my life.
(deactivated member)
on 10/24/09 8:32 am
on 10/24/09 8:32 am
Lizzie,
I think you are expressing yourself perfectly fine. I'm so sorry for all you're going through.
I believe your problems are far worse than mine, and I am also planning a reversal as a quality of life improving measure. Yours is a life-saving measure.
I've said a prayer for your healing, comfort and peace of mind.
Which surgeon will be doing your reversal? Dr. S?
Best of luck to you, my prayers are with you.
Christine
I said coupla hundred grams, just so you know I don't live in a fantasy world. I am also ERNY, tho we didn't call it that back in the day. 100cm (40") common channel.
I did have a bone marrow biopsy because I was hemolyzing. Nice to know my bone marrow is healthy.
I do understand your frustration and I talk to people daily who feel somehow betrayed by their medical professionals because "they didn't tell me this". To which I say, I suspect they didn't "KNOW this". 15 yrs ago, nobody checked out vit E, K, copper and a buncha stuff we do today.
If I didn't specialize in malabsorption, I'd never know this stuff. Did Dr. S suggest you getting in touch with me?
I did have a bone marrow biopsy because I was hemolyzing. Nice to know my bone marrow is healthy.
I do understand your frustration and I talk to people daily who feel somehow betrayed by their medical professionals because "they didn't tell me this". To which I say, I suspect they didn't "KNOW this". 15 yrs ago, nobody checked out vit E, K, copper and a buncha stuff we do today.
If I didn't specialize in malabsorption, I'd never know this stuff. Did Dr. S suggest you getting in touch with me?
Michelle
RNY, distal, 10/5/94
P.S. My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.
mew6495
on 10/24/09 2:20 pm, edited 10/24/09 2:21 pm - MI
on 10/24/09 2:20 pm, edited 10/24/09 2:21 pm - MI
Lizzie,
I am so very sorry to hear of your continued issues stemming from your ERNY. I don't have any great words of wisdom to pass along that you have not already heard of or tried. I just wanted to let you know that you continue to be in my thoughts and prayers and I only wish there was something I could do for you to alleviate your distress.
I can relate to some of your symptoms but surely not to the extent you have been experiencing. So far I have been one of the lucky ones, especially since I have increased all my vitamin levels, many of my symptoms have decreased. But like you, protein has been a struggle for me.
Keep your chin up. If you ever need to vent or someone to talk to feel free to pm me.
MEW
I am so very sorry to hear of your continued issues stemming from your ERNY. I don't have any great words of wisdom to pass along that you have not already heard of or tried. I just wanted to let you know that you continue to be in my thoughts and prayers and I only wish there was something I could do for you to alleviate your distress.
I can relate to some of your symptoms but surely not to the extent you have been experiencing. So far I have been one of the lucky ones, especially since I have increased all my vitamin levels, many of my symptoms have decreased. But like you, protein has been a struggle for me.
Keep your chin up. If you ever need to vent or someone to talk to feel free to pm me.
MEW
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