Help!

[tjones181 2]

I'm in desperate need of any ideas, doctor suggestions, ANYTHING would be GREATLY Appreciated this is my story! I'm not a troll or trying to scare anyone OUT OF THIS LIFE CHANGING surgery! I did everything 100% right so I would not have complications, but unfortunately I'm just that .00001% a freak of nature unfortunately haha!

Here is my story...

I had the Gastric Sleeve Weight Loss Surgery December 3, 2014 and since my health has declined rapidly.

I have on-going:

Chronic widespread nerve pain (Chronic Polyneuropathy)

Numbness, Tingling, and Weakness in lower extremities worse on right side

Constant shooting nerve pain

Insomnia due to chronic nerve pain

Chronic stomach pain

Nose pain and Chronic Sinusitis due to 31st NG (nasal tube)

Difficulty swallowing

Constant chronic stomach cramping

Constant chronic nausea

Constant chronic spitting

Chronic Daily vomiting

Severe Acid reflux

Severe Malnutrition

Multiple Vitamin deficiencies

B Vitamins Deficiencies

Thiamine deficiency

Severe Anemia

Dyslipidemia

Severe Neuropathic Pain

Arthritis

Fibromyalgia

On Feeding Tubes since October 2015

11 Abdominal Feeding Tube procedures

Gastroesophageal reflux disease.

From the moment I woke up from the surgery I've had chronic nausea, issues consuming food and daily vomiting episodes. I've had 11 failed abdominal feeding tubes and I'm currently on my 31st NG nasal tube. I was also on Total parenteral nutrition TPN intravenous feeding for a short time.

I am on my tube feeds continuously 27/7 I cannot eat anything without vomiting. I am constantly nauseous and I've become a “spitter” and I constantly spit all day.

The tube feeds make me extremely bloated and I am in constant chronic stomach pain and cramping. I vomit stomach acid and my tube feeds daily.

The nerve pain started in my toes and the balls of my feet April 2015, in less than a month it spread to my knees and hands left and right side, worse on my right side. Now I have chronic widespread nerve pain all over my body.

I had drop foot on my right side, weakness, numbness, and a burning sensation in May of 2015. I was diagnosed with a rare form of Guillain-Barré syndrome. I was treated with 2 rounds of IVIG,

I went to inpatient rehabilitation to learn to walk, and write again. Unfortunately I still need the use of a walker and wheelchair for anything more than 50 steps.

Also since my gastric surgery, I've had to have multiple surgeries. My gallbladder in Feb 2015, 11 abdominal feeding tube procedures from Dec 2015-Jan 2017, my appendix October 2016, and a abscess surgery that required drains to be placed in my stomach Dec 2015.

My stomach is in constant pain.

I either am constipated or have diarrhea

The pain has highs and lows, but it is constant.

When I use my feeding tube machine to get my nutrition I get very bloated and I have horrible cramping. As of recently I'm rejecting my tube feeds, they make me throw up violently!

This makes all daily task near to impossible!

I only leave my house to go to doctors appointments.

I have become very withdrawn from all family and friends, i have zero desired of social interaction because of my extreme anxiety and depression.

I've lost over 200 pounds to lose my ability to walk, eat, work, and just having a life! I would estimate that I need assistance with 90% or more of my day to day normal activities.

Most days I'm so uncomfortable and in so much pain I can't leave my bed. I'm am miserable!

I'm doing everything I can and I'm not getting any better I feel like my doctors are just trying to treat me not fix me I'm 28 and this life sucks! I don't smoke, take narcotic drugs or drink alcohol!

Thanks for reading my story please share and comment!

Tiera

[Sosewsue61 3,185]

Sorry to hear of your issues. I assume in your feedings your Vitamin deficiencies are being addressed? Have you had plasma exchange or IVIG? I am no doctor but I read about using those treatments for GBS.

[James Marusek 5,244]

Hi Tiera

This is the same thread that you posted on 21 November 2015. How has your condition changed during the last year and a half. Have you looked into any of the suggestions given on this board and what were the results?

[SeaShells82 96]

Why did your feeding tubes fail? It's extremely unusual for someone to have an NGT long term and it's no wonder you're experiencing nasal pain. The cramping you're experiencing could be related to an intolerance to the brand/formula of tube feeding you're using. I would recommend discussing your symptoms with your nutritionist (the company that provides you with the TF will have one for you to consult with) so they can make sure your formula is appropriate. Beyond that, you might want to talk to your doctor to discuss going back on TPN for a bit until your stomach issues settle down.

I'm also assuming you've sought out second/third opinions?

[Berry78 4,261]

With that many problems, see if you could be a candidate for revisional surgery. Bypass (could help with acid), or even a complete gastrectomy.

Unfortunately, things like nerve pain might not clear up, depending on cause. Fixing the nutrition will help more than anything.

[Cathy Collins 0]

I am so sorry you are going thru all this I was diagnosted with peroneal neuropathy 4 weeks ago with foot drop and it is very painful started off numb but now pain has set in. I wish you well in your recovery

[julasif 13]

I'm wondering about a full gasterectomy too. There's been some people who have suffered so much, they eventually just had their stomach removed altogether. Have you spoke to your Dr about that?