Stricture, Malnourishment, and TPN

[BrandonKea 20]

Hey all!

About a month out from surgery I went in because I had an unusual series of events happen. Out of nowhere, I was able to eat significantly less than I had been (just yogurt and cottage cheese), and I had even vomited after a few occasions of simple drinking (Water only).

So, I went in and had a swallow study done. That confirmed my new stomach was slow to empty, and my surgeon suggest a scope to go in and verify and if needed, dilate the closing connection to allow me to eat.

I got called the next day, offering me a time on Monday to go in, or I could wait about two weeks. Since my symptoms had gotten better by this time, I said I didn't need to rush in and get it done, and that I could wait for two weeks.

That was another big mistake. I found my symptoms would be ok in the morning and then at night, they'd flare up and I'd end up vomiting and being unable to keep anything down. This eventually morphed in to being able to consume no Protein shakes (I was put back on Clear liquids and Protein by my doc regardless of when my procedure was, UNTIL I had my procedure.) I felt fine though because my body was still burning fat. But all things being the same, I put a note in my online chart for my nurses to see Monday, asking for the next available date to do the scope.

Monday I was called and told to come in Tuesday. Everything seemed very routine, and the overwhelming feeling was this procedure would fix my issue and I'd be back on track.

Wrong!

I got up after the scope ready to walk out and feeling refreshed from what I'd just call a nap. The nurses had different plans for me. As they wheeled me back to recovery, I asked where my wife was. They told me she had gone to get something to eat and would be up soon, in the meantime, I should order some food. I was told that I could "have whatever I wanted," which I immediately questioned. I also asked why I needed a meal if I was leaving shortly. The reply was that I wasn't leaving shortly, I was being admitted overnight.

I was literally shocked. Confused, and now wishing my wife was there to answer some questions, I tried to get whatever I could out of the nursing staff. They had limited information because they're all just staff in surgical recovery, they don't know all the details of every patient, and there were a lot of them.

I got ahold of my wife who told me she had actually gone home because they said it would be 2 hours before I'd even get back to a room. She told me the dilation was only mildly successful, and that I was malnourished and had to stay overnight for observation.

Long story short, I ended up with a PICC Line, a massive bag of TPN, and orders for home health to help me with future daily bags of TPN for about the next 4-6 weeks until they can go back in and do another scope.

I'm feeling a lot of things right now, most of that is disappointment that this hasn't gone as easily as really everyone led me to believe. I understand every patient is different, but it's so hard to hear things like "you're an ideal candidate for this now because you're so healthy and your only comorbidity is hypertension, so you're mostly healthy aside from that," or, "we don't anticipate any complications in your case."

The moral here is if you think you're having issues, call your surgical team ASAP and tell them. I have no clue if there was anything I could have done to avoid this, I honestly doubt it, but here I am with a 2 liter bag of Fluid I'll be toting around for the next month and a half either way.

[LF1971 7]

So sorry to hear of your troubles. These types of scenarios are troublesome as we never know until after if we will be one of the lucky ones that have no complications at all or end up like you did or worse! Hang in there I wish you a speedy recovery!!

[twinmomC 12]

I had RNY 9/15/15. Like you, I developed symptoms at about 3 weeks. My surgeon and facility is about 3 hours from my home. I didn't trust anyone locally to deal with my "new anatomy" (small, rural towns). I end up back in the big city for my one moth follow up after nearly a week of struggling to keep anything down. Being the "smart one" I am, I also NPO'd myself the night before my appointment to make sure they could scope me on the spot. Well... I DID get admitted for severe dehydration, but the procedure did not happen until the following day. IV fluids to the extreme. I didn't pee for a long time which had some nurses worried (again really dehydrated), but once I started- LOOK OUT!! EGD dilation #1 occured there, they let me eat the next morning and sent me home on a Friday. By Tuesday, with consent of my surgeon in "big city", I was re-admitted through a local ER and seeing a local GI. He also dilated me. 3 more times, at one weel intervals. After his 3rd (my 4th) he threw in the towel and said I needed to go back to my surgeon recommending revision. I returned to "big city" with complications once again and he had me worked on my an INTERVENTIONALIST GI. Apparently with the approval of my surgeon, she was able to be a little more aggressive with the stricture. This was #5. She was able to take my anastimosis to a 15mm. (When this all began- 3 weeks in- I was at 3mm, a pinhole!). She also shot it with steroids, but wanted me back in two weeks if symptoms persisted. Things improved greatly, this was about Nov 11th. I had a follow up on 12/21 with surgeon and was having some familiar pain, so they agreed to do it again on 12/21. Happily, I was at a 13 (only shrunk 2mm in over a month) and she took it to my max of 18mm again with steroid. This was 6 EGD dilations since Oct 15!!! I have very sensitive skin and tissues. I think my body's response is to swell when it is messed with. So the steroids seemed to keep that inflammation down. The next step was to have a stent stiched in there for a period of like 3 months... I'm very glad it's staying open on its own. Happy note. I am 55 lbs lighter than when this whole journey began. Long story short. Hang in there. Take care of yourself. If something doesn't feel right, see your doctor. The IV's for a month sound more severe than I had it, and trust me, I was miserable. I hope they have your stricture under control. Hope you are feeling lots better soon!!!

[BrandonKea 20]

@@twinmomC I can't imagine being that far from my surgeon, I'm a 20 minute drive away! I have a feeling my path with EGD's won't be too much different though, they've already told me it'll take a few.

Found out today I am scheduled back in for my next EGD in 12 days. That's only 12 more days (if I'm lucky) with the TPN bag, which for the moment is my biggest complaint.

Apparently my stricture was so tight, they struggled to even get a pediatric scope in to do anything to it. Frankly, I hope they resolve this sooner than later.

[bugsy72 117]

I'm so sorry to hear of your struggles. I hope it can be cleared up very soon. Thank you for sharing, which will help us all know that we should contact our surgeon if we start having problems. I am one month out--today.

[twinmomC 12]

I hope you are off the bag soon! Seriously, if you are going to require repeat dilations, ask them to shoot it up with steroids. It wasn't until my 5th that mine stayed open more than a week. Good luck to you!!! Keep us posted.

[shadowsoldier 5]

Thank you BrandonKea for posting this! I have been feeling so alone in my struggles. I had my bypass Oct 23rd and have since then been unable to keep any sort of foods down, sometimes liquids even become a struggle for me. Liquids seem to be getting a little easier, but I just gave up on eating much of anything. My surgeon simply said chew longer, wait longer between bites...I decided to try another GI doctor. I go Thursday so I hope that the news is not bad, but I already had to take a trip to the ER once for dehydration. I even get nauseated just thinking about eating at this point.

I've had nothing but complications since this surgery happened and felt like my dr didnt take me seriously. So i just kept it to myself. I really hope your struggle is over soon. I think the most important thing for people to remember that decide to do the surgery is keeping in mind that these sorts of extreme cases happen, its rare, but it happens.

[BrandonKea 20]

It's nice to know I'm not alone, too. I've definitely gotten used to calling my surgical team, even though I feel like I'm bothering them, I'm not. That's what we all pay them for! They do great work too, at least my folks. Hopefully I can get this resolved soon, I'm damn tired of TPN already.

[shadowsoldier 5]

Keep us posted! I'm very curious to hear how things go and hope that you are free from this soon. I am just patiently waiting to meet my new GI Thursday.

[shadowsoldier 5]

It's been a few days but I figured I'd post. I too have a stricture. The new GI i went to didn't want to step on my surgeons toes so I'm supposed to call him and let him know the results. I'm nervous because I feel like my surgeon treats me like a 5 year old child when he talks to me. I hope this ends well...in the meantime, i'm very happy to know what has been causing my inability to eat any sort of solids. 11 weeks post op today, its been hell for me.

Edited January 9, 2016 by shadowsoldier

[BrandonKea 20]

Had my EGD yesterday, it went VERY well! My surgeon is very pleased with my outcome, and I'm definitely able to feel a difference in volume and as far as things moving more quickly.

Now I'm just working on getting all that anesthesia out, I'm ridiculously sore!

[rhansen7 1]

I would like to hear the rest of the story here! I had my surgery 4/22 and was fine until about 2-1/2 weeks when I started throwing up. I had an upper GI yesterday and my small hiatal hernia repair is swollen and I have a narrowing in my stomach, but the barium was getting through. I'm back on liquids for a week or two to see if it resolves on its own, and if not we'll discuss having a "stent" procedure. I'd really like to here how your situations turned out. Thanks so much!