anyone have a feeding tube implanted for malnutrition?

I am curious what to expect, we had so many questions about the surgery that will take place to explore what the problems are that we didnt get into the feeding tube, i am trying to get ready mentally for this but was vomiting at that point and we  were done setting up the exploratory, now wonder what to ecpect??? Denise

I had a feeding tube installed in my belly. Mine was put in about 8 months after my DS. My protein levels were good, then I got really weak and tired all of the time, so the doctors rechecked all my bloodwork. They found my protein levels were dropping way below normal, and nothing seemed to help. Yes, I was taking all of my vitamins, and eating over 100 g of protein, as well. I got to the point where I could barely walk, had trouble driving safely, and couldn't go up and down the stairs. I was so weak that they put the feeding tube in me and started me on MEGA-doses to try to get some strength back. My feeding tube was supposed to be a 3 or 4 month deal, but instead, I had it in for 13 months. It was really a difficult time. Hard to sleep with a tube coming out of the belly, had to tape it up every day to go to work, and it hurt like hell when it got pulled or hit.

The protein that goes into the tube was not cheap, but insurance covered some of it. Plus, you still have to eat your 100g of regular food. It was so nice when it was removed.

Hi Denise,

I also had a feeding tube in for about a year. I had mine due to severe complications with my DS so I was NPO for about a year and a half. It was a pain in the ass but in the long run it made me healthier and gave me the ability to get better much quicker because I was getting the proper nutrition  my body needed to heal. After it got yanked on a few times I learned to tape it up really well so it stopped being caught on things. For me I found sleeping in a recliner or on my back with pillows propped up all around me so I didn't roll on it. Also I learned that coke is great for clearing a plugged tube. Best of luck and if you have any questions please feel free to ask. 

Just so you know---this is NOT a common occurrence. I'd feel safe saying that 99% of DSers NEVER have a feeding tube.

I my HO i do not think this is  common occurrence in any of the  weight loss surgeries, I am having more responses than I thought i would, I think there are a lot more complications out there that are being missed, or missed diagnoised, the bacteria one for sure, thank you, Denise

I was on TPN for 8-9 months. I didn't have a feeding tube I had something called a Groshong cathetar which was in my chest. I had to infuse the TPN over 8 hours. I usually did it at night. I was also NPO at he time,though I did eat a little, but mostly threw it up. I had a gastric leak and internal / external fistulas. I had a bunch of other post op complications too, but they are not specific to this discussion. 

The TPN brought up my albumin and pre-albumin levels. I used to get annoyed at night because I was on the TPN for so long. Mentally I just kept telling myself that everyday it would get better and that everyday I was healing. I worked very hard to keep a good attitude. Sure, I did have some "oh woe is me" days, but I was determined not to let what was going on with me to get me down. I'm convinced that a bad attitude will only prolong healing. Each time there was a set back I would tell myself that it was just another pothole, but that I would come out of it stronger.  I didn't whine much online as I really felt it was necessary for me to maintain a postive outlook. It took 18 months and another large operation to finally get things fixed. It was a long road, but I'm on the otherside now and am happy. 

Just try to keep a good outlook. It's just one step to getting better. 

Maddie

Thank you for the reply, nope, not what they are planning on doing for me, sounds like you did fine with it all, I DO have a good out look, I have a beautiful, compassionate, understanding family, 4 grandbabies under the age of 3, so much to get well for and do embrace each & every day, some days sure i am pi*sed off, but i think that is just human, to go almost 10 years with not one issue then get hit hard was a little hard to deal with. again, thank you for you kind thoughts, Denise

Oh yeah, I hear ya. I cannot imagine suddenly having issues again and if I did and they said I had to go on TPN again I'd bawlk long and hard about it. I was on TPN and enteral feeding though a J'tube that was inserted into my intestines for 3 months and on tpn for almost 9 months. I had a stomach stricture (at the time undiagnosed, but found at the last surgery. Apparently it was so tight and had such poor blood flow that the tip of a ball point pen would not penetrate it. I asked the surgeon how I was able to eat anything at all and not throw up and he said I had four internal fistulas. Two that went to my small intestine one to my large intestine and one up under my liver. I had internal abcesses too that I didn't know about that had to be addressed. Apparently being on antibiotics for all that time (I was on them for 14 months) pretty much is the only reason that it kept them under control. They would grow, then they would go away. My liver enzyme numbers would be normal for a few weeks then go wonky. I suspect it was from the fistulas and the abcesses. 

I'm glad you have a lot of support. It's good that you do.  Sometimes I would get so frustrated with the TPN. THere were times my husband and I would fight because I JUST didn't want to infuse. I'd go to bed unhooked and wake up to the purring of the pumping machine. My husband just wasn't going to allow me to not infuse. In the beginning it was really hard because I would have to infuse over 12 hours. I had to carry around a bag with the pump and the line. It got very annoying. Eventually I was allowed to drop back to 8 hour infusions. This was better since I'd go to bed around 10 and be done in the morning and would not have to lug around that damned pump, backpack and TPN bag!  I had great nutritional support too. The counselor listened to me. When I started gaining weight I said that if they didn't lessen the amount of glucose so I wouldn't gain weight I would skip infusions every other day. I look back on it now and see how petulant I was acting, but I felt like I had a revision to lose weight and here I was gaining. It was a deal breaker.  In the long run they did lower the glucose amount and the amount of calories and I maintained for a long time. Then I started walking and doing more as I got my strength back and within a week I lost 10 pounds. That freaked out the nutritionist, but I assured her I was infusing everyday. No changes were made. I did manage to lose more weight, but the rest of it came off after my last operation to repair the fistulas and leak.  

Holy cow!! you sure did have it rough and you had every reason on this earth to  whine!!! You had so many of the issues all at onec that i think are not diagnoised correctly or are poo pooed away as , an ulcer, ,,,,, here take this med,,,,,,, did any of this show on CT or any testing you had? again thankl you and i SURE hope you are feeling better, big  ole, hug to you :) mine is not showing , so that is why the exploratory, so sick of being sick and vomiting!!!

Here is a condensed version of what happened post op http://www.obesityhelp.com/member/renfairewench/blog/2011/02 /16/why-i-decided-to-revise-from-rny-to-ds-and-what-happened -/

I'm sure I have left stuff out, but that's how my post op journey began. 

It ended with another large operation to repair the strictures, leak, abcesses, and fistulas. I lost about 90% of my stomach but I can eat a LOT. I have no off button. It's like pouring food down a hose. 

Yes, I had a lot of tests. I must have had 8 CT scans. Many of the fistulas were "blind" fistulas. They were not seen in the scan. I had at least 5 upper GI's. I ended up having a fistula plug, but now knowing what I know it never stood a chance because I had too much going on. Nothing was ever poo poohed. My doctor was great. My post op complications were not because he did something wrong. My body just reacted poorly. It's like trying to climb a loose soiled hill. When you gain some ground you lose your footing and fall back, but not to the beginning. Eventually you make it to the top, but you have to remember to step away from the edge!

I ended up being referred to a gastro surgeon at Penn. Hospital in Philly. He said "you could lose your whole stomach" at this point, I just didn't give a care. I wanted to stop feeling like crap and wanted to get better. Intestinally I'm still a DS. I just don't have much of a stomach. I had a near complete gastrectomy. 

While it sucked I really just wanted to get better. I kept a good attitude most of the time.  I threw up a lot then. Now that I am the way that I am I rarely throw up. In the last two years I've probably thrown up 3 times. 

I always tried to remember that someone might have it worse than me. On the days when I really thought I could not go on one more day I would hear that someone did have it worse. Like the day I was crying and whining to my beloved Uncle and he told me that I would live. I thought he was being callous, but that was when he told me my cousin, his daughter, had stage 4 uterine/ovarian cancer and that it had metasosized. It made me realize I had nothing to whine about and how dare I **** and moan!  It set my mind and my attitude in reset mode again. 

It was a journey and I use it to educate newbies. 'm a stonger person for the troubles I had and I really do love my life. I love being thinner. Of course, I'm never thin enough, but that's another story!