TPN-feeding tube-complete revision...?

I had a TPN iv infusion's for 4 months...enough lipids, sugars, vitamins to equal 1,000 calories per day...Surgery next week for an endoscopy... feeding tube...or complete revision..
Has anyone else had the same thing of not keeping down anything and I mean anything...I got  down to 82 lbs...
What would you do or what have you done?
Thank You, Sandra Buchanan
Sandy_B

 I'm in the sae situation. I'm on TPN via a picc line. I have had mine since the first week in June. 

Im now considering a secon opinion. 

Today the say the fluoroscopy looks good, sent me home with more nausea meds and want me to hang on until Wednesday. Not sure what I'm hanging in for.

Hello there!

I know that over 90% of people that get wls are happy and have a new lease on life. This FACT is awesome for them. Everyone deserves to be happy and have a full life. 

My tale however is a very different wls tale but it also rings familiar for many people, some who are often silenced by patients and practioners alike. 

9 years ago I had a lap rny. surgery done to PERFECTION. My new tool worked mechanically for every barium test, ct and mri. I was NOT fine. 

It took me 3.5 years, 12 different doctors and over $200,000 in medical claims, co pays and deductibles. (insurance covered most thank God) 

Finally after exhausting every option  I flew out of state to a doctor I had never met for the CHANCE at a quality of life no matter what the duration.

It's been over 6 years since my reversal/takedown and EVERY post rny ailment I had acquired either got significantly better or disappeared all together.

Granted not all stories are the same and some people get worse for a time.

I didn't gain the weight back but my weight fluctuates 5-10 pounds. Frankly I don't check the scale much.

What I'm doing now is asking for the small community of wls complications, success stories over 10 years old and those who have had their rny reversed/taken down to speak and let their stories be told.

I'm not JUST concentrating of wls issues but I think for every 10 success story posted, maybe 20, heck 100, there is one person out there, feeling alone and marinating in shame for reasons that MAY be out of their control. Everyone's stories deserve to be heard.

I'm creating a documentary and I would love to hear your story. I can close my eyes and pluck success stories by a simple click of my mouse, although it's more difficult to find long termers, likely because they're doing great and are out there living their lives.

Please don't let shame hold you back from contacting me. If anyone can truly understand your struggles, it's me.

My email is [email protected]

Be well

Grace

 

Hello,

I wrote back to you. I had a bowel obstruction last year which resulted in the loss of 90% of my small bowel. I was on TPN for 8 months and I'm doing better now.  I can eat and nothing bothers me other than having to go to the bathroom often if I drink a lot of liquids.

Gus

I'm having almost the exact same problems. I had my first RNY  in April. About a month after surgery is when the problems started. I couldn't eat anything solid, some days not even water would stay down. My surgeon finally did my revision in Sept( after 5 months of hell)! Its been 7 weeks since the revision and the symptoms are coming back! Only now I cant get my surgeon to do anything to help me. So I'm wondering what you had done and if it was successful?

Wow! Just on the up side you are number 9!!! When I went to the Mayo Clinic they told me I was one of 8 people that they had seen with these problems so you must be number 9. Anyway, when the first surgeon that I had put me on TPN also and just left me there. He wouldn't return any of my phone calls or the other doctors phone calls. If you lived in my state I would swear we had the same doctor. When you had your revision did you get a gastrectomy? I did. I have chronic pain everyday. Either from the scar tissue from the surgery or scar tissue from the feeding tubes. I as you did felt better for about 7-8 months then I began vomitting in my sleep. I'm not sure if tat is happening to you yet. And because of that that I keep getting aspiration pneumonia. Dr. Raper (the second surgeon) went back in to do another revision hoping that if he lengthened my limb that gravity would keep the vomit down which would prevent the aspirations. It worked for a short while and then since July it had been getting worse and since July 31st through second week in October I was hospitalized for aspiration pneumonia. Dr. Raper is one of the best gastrosurgeons in the country and he is at the University of Pennsylvania. He has a reputation of fixing other doctor's mistakes. He sat down with a group of 14 doctors to discuss me!! And the only two solutions that they came up with was 1. Sew off my esophagus and give me a permenately feeding tube or 2. Sew off my vocal chords and give me a permanent tracheotomy. None of which sounds appealing or fun to do.

my primary doctor thins that if I go on a high protein low carb no sugar diet and lost weight that would put less pressure on the diaphragm and it won't push on the chest cavity causing me to aspirate with continuing to sleep elevated and no eating 4 hours before bed. We don't know how that will work because we don't know how I gained this extra weight since I don't eat much and I have no stomach or duodenum. Since August I have only lost 5 pounds which is depressing but I have to keep taking steroids for the pneumonia and I retain fluid on that and it's a vicious circle not to mention that the prednisone has given me cataracts and insulin-dependent diabetes. But on the good side I haven't aspirated. So we think that maybe my body doesn't know or doesn't remember how to digest carbs. And I also have been diagnosed with central sleep apnea, different from obstructive sleep apnea. The specialists feel that when I was in the coma I must have had a small stroke that caused that. So she feels that by using a bi-pap machine at night that too may stop the aspirations. 

Im so sorry that I wrote you a book but I've been through so much and done so much of the testing that if I could save you from getting one more test or if you can learn something from my experience to help you, it would make my searching for answers worth something even if it can't help me.

good luck and please keep me updated. I haven't seen any posting from you in a while and I was really worried. 

Danielle

After 3.5 years of unresolved pain, memory loss and a myriad of other seemingly unrelated to rny symptoms, I had my surgery reversed/takedown. Most of my issues were resolved or lessened post takedown.
PM me if you would like to talk and know more.
I don't wanna litter the site with my whole long story. I do want to inform anyone who suffers from seemingly odd, nonrelated medical issues, that, despite normal tests, and multiple doctors insinuating it's "all in your head" type attitude, they are not alone.
Grace

Who performed your surgery?  I had a 'revision' done by RoseMarie Jones and to say the least she hacked on me!