Excited About Dr. Husted

Hey Tara:

Wow...You've lost a lot of weight 90 lbs, that's great...How much did you originally set out to lose? I've lost 70 and I had my surgery May 29th, 2009 very close to yours...I remember when you went in...

So did you originally have an RNY? Was your pouch or stoma stretched? I've had a lot of the same problems but honestly I only go to the bathroom about 4 times a day and now only about twice a day...But I have had the muscle aches, not too much fatigue, have never passed out yet, but I do have a burning tongue which is indicative of low Vit B and Iron...Which I have always had prior to ERNY....I have planned my days by a bathroom though I know what you mean by that...Seems like everytime I get into a grocery store my first stop is there bathroom...Sometimes I feel like Albertson's probably thinks I'm just loving their stalls or something...

I hope you are able to get what you need to help you...I would love to talk to you sometime...

JRolfson

Tara,
With all your issues I can say I have been there, have had most of your symptoms and then some more.  You need to be on TPN, don't let them wait too long as the symptoms probably won't get better on their own.  This can be a life threatening situation  It is a long process to better health.  Protein and vitamin malabsorption is not fun. 
Deanne

Hi there
glad to see you back on the forum. I was wondering how you were doing. You and I had talked a lot when going thru our revisions of the erny. I ended up having the common channel lengthend and I'm doing great. I hope things continue for me. Lots of issues resolved for me once it was lengthend and I'm glad I did it. Let me know how things are for you. Glad to see you on here.
Lori Evers

Hi Lori....

Yes, I do remember all of our chats and I'm so glad you got your issues lined out by going longer on the cc...Who did your surgery to lengthen you?

Did you lose your excess weight and how since the surgery to lengthen are you doing now? It's something I've considered myself...Although I'd still really like a revision to DS...I just dont know how I could ever swing it...

I have to say that to date I'm doing really well but I'm due for labs so the story will be told then...I need to be more diligent in taking my vits...I have to admit I am not the greatest but I feel fortunate that I've done so well to date...

Please stay in touch...

Love talking to you again.

JRolfson

Hi - can you explain in layman's terms exactly what the ERNY is? Is it specific to revision surgery? Thanks. Maureen

Hi Maureen:

ERNY is a term that some Surgeons use other's use the term Distal RNY...and yes it can be a revision surgery or it can be performed at the time of a virgin RNY...ERNY stands for Extended RNY...They go in and shorten the common channel which adds malabsorption to the mix...

There are many experienced and excellent surgeons out there that feel this surgery is a thing of the past and shouldn't be done anymore... Personally, I can see why it isn't healthy especially if the surgeon goes shorter than a 150/100 cc...Many patients on the boards have had to go in and have their ERNY's or Distal's reversed due to severe malabsorption issues and vitamin loss...I'm sure if they read this they will weigh in...I have been pretty fortunate to date as so far my vit levels have been good every 3-6 months it's been a year and 3 months since my surgery and I've lost 70 lbs...I hover now at 140 compared to 214 at surgery date...

But if you want my honest opinion...I wouldn't consider the ERNY as an option if you are not absolutely articulate on taking vitamins, ingesting protein and drinking tons of water....the results down the road will be bad...I'm not the most diligent on the vits and I have noticed a difference on how I feel, dry skin, dry hair, thin nails, burning tongue...Just some of the many effects of vitamin deficiencies...There are other issues in the first 9-12 mths such as painful smelly gas/oily stools/smelly elimination...there were times when I wondered what have I done...I've pretty much passed all that stage and now I just worry about gaining weight again...

Hope this helps...

JRolfson

Thanks so much, this is very helpful. Congratulations on your success. I stayed at 140 for about 3 years after my initial RNY and now I struggle mightily to stay below 165. No matter what I do I can't seem to stave off the weight regain; after having come from 360 lbs. in 2004, at time of my RNY, I am terrified that there is no stemming this tide. Don't know quite what to do at this point; had an appointment with a very well regarded surgeon in the state (not my original) about a revision wherein he would simply tweak the original surgery - make my pouch smaller, shrink the stoma opening... I don't see how that will help long term so I canceled.  . I know the endoscopic options absolutely do NOT work - ROSE, stomaphyx (I call it stomaphail), etc. And I do not want to band my pouch. So... yes, I know, I know - look to the DS. How can I possibly get a revision of that kind when I am maintaining a weight of 165, more than 75% of my original weight loss? My insurance would not cover it - anyway, thanks so much for your thoughtful response. I truly feel all alone in this, heading up on my 7 year surgiversary... Maureen

Maureen:

I feel so bad for you...I have been where you tread...Your so right about the ROSE/Stomaphyx...Although someday I believe this will be the wave of the future...I just read where the first endoluminal pouch resizing was done in California....The first...So it's on the horizon but for now...We have the DS Revision/Distal RNY or ERNY/Re-sizing of pouch/stoma and those my friend, are our viable options...

Are you articulate about vitamins/protein and water? Because if you are you could at 165 lbs qualify for a revision with the Distal...After all Vital Lady had it and she's done very well...So far I'm okay but have a few misgivings...But I'm happier now than after the RNY...it's not near as technically involved as a surgery revising the pouch and stoma...That is a pretty major ordeal and must be done by only the best of surgeons...There is much room for leaks and problems...If you're going to go to that extreme you may as well go all the way for a DS Revision I would say the surgical risks are close to the same....You just might have to travel to do it...Who are you considering as a surgeon for the RNY Revision?

Good Luck Maureen...Hope you get what your looking for...

JRolfson

Hi, JR - I've always been very vigilent about my vitamins post-surgery although I admit to not being the most knowledgeable (like Andrea and VitaLady) about what to take, when, how often. My labs are usually very good except my liver stats are always elevated but not to an extreme; my doctor is keeping a close eye on those numbers. I do have hypoglycemic episodes from time. The doctor I was going to see is Dr. Raftopolous in Hartford, CT. He has a very good reputation. For the past two years I have experienced a painful hunger that does not subside even after eating. The hunger is more extreme than anything I ever experienced as a morbidly obese person (of course, I was probably eating so much of the time then that I was never hungry!) This hunger is driving me nuts - feels like a wide open gaping hole that never gets filled. At any rate, thanks again for taking the time to "talk to me" about all of this - greatly appreciated! Maureen

I would say Maureen your hunger is probably legitimate as you may have a stretched stoma like I had and still have...Which means and you most likely already know it means food doesn't stay in the pouch it just drops down into the stoma and into the intestine never allowing you to feel full or satisfied...I suffer with this daily as I didn't revise anything but shorten the common channel...I think if you've had an RNY and you need a revision you almost have to get a procedure that is going to give you a feeling of fullness again for losing and malabsorption for maintaining...Just my opinion...

Good Luck Maureen