Really down, need some encouragement- Sorry long post

Hello All,

 

I need some positive words and hope I do not get much bashing as I am already down as it is. I am sorry for the long post, but need to give some background information. I had RnY 2/14/2007, (SW310- GW 160) and met and went below my goal weight in about 18 months. I maintained this weight for about 6 1/2 yrs.

 

Fast forward to 11/2013, I started losing due to pain in my stomach when I ate or drank anything. I went to my GP had labs run, vitamin levels were a little off and I have been on meds for acid-reflux since 1st surgery (very acidic stomach) so these were doubled. I have a very stressful job that gets worse during the holidays, so I kept pushing and thinking I would get to feeling better, the meds would work and I all would be well.

Valentines day I end up at the ER at 4AM thinking I was having a heart attack. Been sick all night and it hurt to take a breath. The ER doc ran labs and told me I had the noro virus and sent me home. A few days later Im back at my GP, losing more weight, cant keep anything down and miserable. They did some tests, ekg, chest x-ray, blood work and told me everything looked ok. I told them I couldn't keep anything down, and by that time I was starting to hurt all over my abdominal area. Again, told may be still lingering effects of the noro virus to go on liquids and I would get better. I went back and forth to the GP about 8 or 10 times until May 2, I was taken out of work because I blacked out. My spouse took me back to the ER (but to a different hospital). I explained what was going on and the ER doc sent me for a CT scan of my abdominal area and found several large ulcers and a gastric leak from my pouch to my residual stomach. I was shocked and very angry that I had been hurting so long and nobody thought to run a CT scan until then. By this time I had lost about 20 lbs and was down to 136 lbs. Im 6' tall and looked terrible.

 

I called my surgeon and he worked me into an emergency appointment in a few days. I was very weak at this time and still not able to keep much down at all. I was given additional meds to try to heal the ulcers and tried to gain weight. I was told bluntly that I would have to have a revision and I could not have it until I was stronger, as at that point, he did not think I would survive a surgery due to being severely malnourished- had lost 10 more lbs. A week later they attempted to place a NG feeding tube through my nose, but were not successful because of my something in my sinuses. So I was hospitalized and a PICC line placed in my arm and started on TPN. I was on TPN for approximately 8 weeks feeding 12 hrs a day.

 

I had a revision on 7/7/14 to remove the ulcers and fix the leak. 15 cm of my small bowel and about 1/4 of my pouch was removed, revision done to make a new pouch and a gastric feeding tube placed into my remnant stomach. I was hospitalized for 8 days and it was not an experience I would wish on my worst enemy.

 

I have been able to gain back up to a healthy weight of 156 between the TPN (stopped this after surgery, thank god!) and the feeding tube, however my surgeon will not remove the gastric feeding tube until I have stopped using the tube for feeds for at least a month. Everytime I back off on the amount I feed at night I lose weight and have to go back up. The last 4 months have been horrible and I'm just so tired of this. The feeding tube hurts and my body wants to lose weight even though I am putting about 800 cal oral and 750 by tube if I try to back off on the tube I lose.

 

Has anyone had to try to gain weight and not lose? I am just bummed right now. My family went to the beach and I stayed home with the dogs because I hate the thoughts of traveling with this right now (for 2 days not worth the hassle). I have used almost all of my vacation time and sick time from work and will return in a week, which should be interesting. (I couldn't work while I had the PICC line and on TPN, due to the chance of infection.)

I guess I just need a few words of encouragement to get me a kick in the butt to get off my pitty party right now.  This is really this first time I have gotten blue throughout this whole time. I have a great network and support care.

 

Anyway, thank you for listening and my pitty party is over.

 

Hope everyone has a nice Labor day tomorrow.

 

D

 

I'm so sorry to hear what you've had to go through.   It's shameful that they did not diagnose the problem sooner. 

I hope that things will only improve from this point forward.   I wish you the very best 

I'm so sorry that you're going thru all this & a big hug to you  I'm only 4 months post op so I can't give much advice, I do hope you get better soon & maybe you should post this on the rny forum, maybe someone can relate? All the best to you.

My prayers are with you. Everyone's journey is different and it gives me a new appreciation for those who's journeys are not all smooth sailing. I would definitely talk to someone especially while you are going through this transition. I wish I had some better advice but I wish you the best.

I would add healthy, high calorie, fats like peanut butter to help you gain weight.  Peanut butter packs a lot of calories in a small volume.  Make sure the peanut butter does not contain extra sugar if you have a problem with dumping.  You can add peanut butter to a lot of things( puddings, protein shakes, oatmeal) or make your own protein bars with peanut butter.  There are lots of recipes on line.  

I am sorry to hear of the hard time you have had. I pray and hope for much better days ahead for you...

I'm so sorry your going threw this I hope everything gets better. Be strong and hopefully you'll get back to health. Asking us to listen isn't a pity party we are all here to support each other.  I wish you the best.

I can't really offer any advice as I'm just a newbie and just starting the process to get Was but I wanted to offer emotional support. I'm so sorry you are having such a rough time, I can't imagine how hard this must all be for you. Keep your chin up and don't give up. I'm not a religious person by nature but I'll pray for you. I truly hope things start to get better for you real soon. Big Hugs 

Oh my goodness, you really have had a difficult time. So sorry for all you've been through.  Bless your heart.

Oh Wow!  You poor thing!  I hope things start getting better very soon!  How awful this has been for you and you are definitely deserving the pitty party...no apologies necessary!!  I don't have any advice because I'm still a pre-op newbie, so all I can say is take care of yourself and try to get your freaking doctors to help you - they need to figure out WHY you keep losing weight!!!  Keep posting on here to let us know how things are going for you!!!!