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NG tubes are the worst.

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Posted 10/3/2014 9:10 AM (GMT 0)
Well, I definitely regret eating the "ileostomy diet" tray of food the hospital brought to me yesterday for the first time. It consisted of a cardboard tasting hamburger on whole wheat. Then for dinner I had rice, chicken and carrots... the carrots weren't that well cooked.

I definitely paid for it. My ileo wasn't outputting, at first I thought I was having horrible gas pains. My pain meds were not working at all, no matter what they gave me. I was screaming in pain, it was a 10/10, not even hydromorphone or morphine helped. I finally went in for a CT scan, where they found a build up of fluids in my bowels, and sure enough they were way too inflamed to start a solid food diet (even though the surgeon gave me the green light the day before).

So at 7pm, they inserted an NG tube from my nose into my stomach to pump out the fluids. Worst experience of my life, but it is so far helping (yes, still on it, I can't sleep with it so I'm on the computer at 2am in the morning). Since inserting it, my ileo swelled up like a balloon with tons of output, including the lunch and dinner I had yesterday.

Definitely not eating any solid food for a long while after this experience, no matter what the hospital doctors say. I was in the worst pain in my life, I literally thought I was going to die, 10/10 pain from October 1st at 10pm until October 2nd at 7pm. Wouldn't wish that experience on my worst enemy

I feel so dumb for consuming solid food so fast, but at the same time, why would the surgeon encourage it so fast? So disappointed that this put a dent in my recovery.
Posted 10/3/2014 1:48 PM (GMT 0)
Not your fault. Typically we think our doctors know what they are doing. Sadly, they rarely do. Stay on the liquids for a while and very slowly build up. Someone mentioned mechanical soft foods for you on another thread. That would be after liquids - it's food that looks like it's already been chewed. Just take things very slowly even if the medical staff is pushing you forward. You'll get past this and be fine. And yes, NG tubes are awful.
Posted 10/3/2014 1:54 PM (GMT 0)
The doctors told me I'll stay on the NG tubes for at least a couple days, until there is no more fluid coming out. So no eating or drinking for me, everything by nose!! They even put my pain meds in through here, feels very strange!!
Posted 10/3/2014 5:43 PM (GMT 0)
When I read your other post about what they were serving you, I cringed. That's why I wrote to go slow with food. So sorry this happened....they should know better. Hang in there this will pass.
Posted 10/3/2014 7:35 PM (GMT 0)
I feel for you!

I had an NG tube put in after a blockage in April - when your nurse says "this is the first time doing this on a patient", you know how it's going down! LOL

I was dry heaving doing anything and it was a terrible time for sure. It was such a relief when it came out.

Wishing you the best!
Posted 10/3/2014 10:05 PM (GMT 0)
There were three nurses helping me and luckily the one nurse was apparently very well experienced. This entire floor I'm on in the hospital is full of ostomy patients. Which kind of makes me surprised they gave me that food so soon after my surgery... oh well. I just know that I will stick to clear and full fluids for at least a week then go slowly with soft foods after that.

My bowels are still distended though and I'm not passing much gas into my bag. :( Bugs me. I went for a short walk today, not sure how much or how little I should walk right now to help with the gas.
Posted 10/3/2014 10:44 PM (GMT 0)
My hospital room mate had one this morning too. She did very well for being ok with it. She's 75 tho.

Feel better. I am only sipping soup and tea right now.
Posted 10/3/2014 11:30 PM (GMT 0)
     I feel for ya!  I had my operation on a Monday, June 28, 2010.  The next day, the head resident came into my room and told me she was giving me the heads up to eat the following day...two days post op.  OOOOOk...sounded good to me.   They didn't give me a breakfast, but, for lunch they brought in broiled chicken, mashed potato and thoroughly cooked carrots.  For dessert....lemon cake...mmmmmm....lemon cake!!!  Tasted great going down....coming back up...not so much shakehead .  It wasn't just a tiny barf...it was a HUUUUUGE barf...all over me, all over the bed!  Nurses ran in, cleaned me up and I just kept barfing.  My surgeon happened to be on the floor.  He said, "Who told you that you could eat?"  So, I told him, "Your head resident."  OMG...he must have served her head on a plate in the cafeteria.  In the meantime, he sent in two male residents to put that ng tube down.  Agreed, it wasn't the most pleasant experience of my life, but what a relief!!!!  Within a short time, two large containers of bile filled up.  Next day, my surgeon checked on me and said..."Don't let ANYBODY tell you that you can eat, your body will tell you when you can eat."   The ng tube was in for three days.

     Apparently, the head resident wanted to clear out as many patients as possible with the upcoming July 4th weekend.  She thought the earlier I ate, and was successful at it, the less work for her.  WRONG!  I was in there till July 9th. 

Posted 10/3/2014 11:58 PM (GMT 0)
Tbh, it was also a resident who told me I could eat! She was pretty quick to suggest it to me because she asked if I was ready on the second day but then I said no. So when she asked on the third day again, i felt as if i should.
Posted 10/4/2014 12:39 AM (GMT 0)
Annadee-- so sorry to hear you are going through exactly what happened to me! My nurses and docs aggressively shifted me to a normal diet within a week and i ended up back in the hospital and on that horrible Ng tube too. I should have listened to my wife, who asked me to ignore their diet shift pace. That is ancient history for me now but I remember the NG tube insertion feeling like I imagine water boarding must feel like- like someone is trying to choke you. And then the inability to even swallow and breath properly without pain. As you can see from this thread, this is an all too common experience... i dont know why so many CR surgery docs and nurses insist on a rapid shift to solid food when very low residue for at least two weeks makes infinitely more sense. Also keep the meals tiny and frequent for those first 2 weeks.

Long term this is but a tiny hiccup... Hope you feel much better soon!
Posted 10/4/2014 2:10 AM (GMT 0)
Wow, thanks for that Probiotic, gives me some hope that I will get better!!! Right now my abdomen is soooooo swollen omg!! I hope the swelling will go down. I knew recovery from surgery wouldn't be easy, but man, I wasn't expecting this!! Can't wait for this experience to be a thing of the past.
Posted 10/4/2014 2:59 AM (GMT 0)
My heart goes out to you as I remember so well the pain. They removed my NG tube after 2 days and then I started throwing up again and back in it went... Horrible. Definitely go for those walks as best you can (rough as it is with the darned NG tubes- you need a nurse to lug everything As I recall even after you get temporarily disconnected from some of the "tethers"). It all seems to last forever but with any luck it will all be out momentarily. Best wishes!
Posted 10/4/2014 3:11 AM (GMT 0)
My ng tube worked itself out! LOL! They were going to take it out in three days anyway, but my surgeon came in one morning and there was the tube, lying on my bed, next to me. He said, "Chris, you pull that out?" I was scared he was going to put it back down, but he didn't. He kept me on a liquid diet for a few days. I didn't eat solids till the day before discharge.
Posted 10/4/2014 6:06 AM (GMT 0)
Ughhh, it is so freaking uncomfortable to walk. I did three laps today and it feels as though there is a bunch of jelly on the left side of my lower abdomen and jiggles when I walk. It doesn't hurt but my goodness, sooooo uncomfortable. I can't wait for all this to end.
Posted 10/4/2014 3:54 PM (GMT 0)
I feel for you, I had a NG tube a year ago September for over a week. I hated it! When I got off of it I had liquids for about probably a month and slowly slowly, had baby food ( everything pureed) for about another month then gradually ate small bites of carrot, potato, chicken, fish. Then attempted other food but introduced it very slowly. I also kept a diary of everything I ate everyday for the first six to seven months. Now I eat just about everything but still careful. Don't wont to go that root again! Take care and God bless!
Posted 10/4/2014 11:58 PM (GMT 0)
Just playing devil's advocate, there's evidence that eating can actually help resolve ileus and get the gut working. In fact, European hospitals are said to have lower incidence of prolonged post-op ileus than American hospitals because they serve food to patients sooner on average. Of course, the flip side of that is that if you DO start eating and your ileus doesn't resolve, you will need the NG tube and that really stinks. It's a darned if you do, darned if you don't situation.

I was lucky to avoid the NG tube all three times, but I came close to a readmission Probro style because I cockily ate a big meal after discharge from my second surgery. I probably would have gone right back to the hospital -- the pain was unimaginable -- but it was the middle of the night and I decided to wait until morning, and by then it had resolved.

In any case, to answer your question from upthread, walk as much as you can. Lying in bed would make a person who HASN'T had surgery constipated -- it isn't good for them, it isn't good for you! Walk as much as you can, multiple times per day, and try to sit up in a chair for a good portion of the day instead of staying in bed. All these things will help. Good luck!
Posted 10/5/2014 12:39 AM (GMT 0)

Pluot said...
Just playing devil's advocate, there's evidence that eating can actually help resolve ileus and get the gut working. In fact, European hospitals are said to have lower incidence of prolonged post-op ileus than American hospitals because they serve food to patients sooner on average.

Interestingly enough, the hospital I had my surgery at had us chew gum a few times a DAY to stimulate the digestive system (without needed to swallow food). Not sure if other hospitals do that too.
Posted 10/5/2014 3:03 AM (GMT 0)
I agree eating helps stimulate digestion... But it should be low res for first two weeks methinks. The docs pushing this solid food days after major CR surgery while one is still on a lot of narcotic meds is insane IMO.
Posted 10/5/2014 3:43 AM (GMT 0)
Pluot, I just spent the entire day reading your blog. Just want to say it's awesome. I am trying really hard to walk but omg, this jelly belly of mine is awful, it feels like my intestines will all just spill out when I walk, I have to hold on to my abdomen because that's the only way it feels remotely comfortable. The surgeons all keep saying it's normal and it's just gas, they did a CT scan. But omg, so, so hard. I have to somehow convince myself that my all my abdominal contents will not spill out if I walk... I did three laps today and had a shower but I'm still distended.

Vegan ostomy, I wish I had gum, maybe I should ask my parents to bring me some tomorrow (obvs will not swallow it and will ask the doc in the morning if I can have some). In the mean time, I will mimic the motions of chewing to see if it does anything, LOL! Hey, I'll try anything at this point. :)

Probiotic... I agree, I will be only eating clear fluids/full fluids/soft foods until the 6-8 week period is up. No way am I ever going to get those NG tubes back in me as long as I can help it...

Oh yeah, I got the NG tubes out today, no food, just TPN (I've been on TPN since last Tuesday, before my surgery) and so far no nausea. I'm so worried I'll get nauseous and again and they'll have to put them back in but I'm trying to remain positive.

Anyway, I really hope my jelly belly will resolve itself soon and it's just normal ileus/post surgical inflammation I'm experiencing. That is the most discomfort I'm having right now... it really sucks...

Thanks everyone SO much for all your replies, I truly appreciate them. You are all awesome.
Posted 10/5/2014 4:23 AM (GMT 0)

annadee said...

Vegan ostomy, I wish I had gum, maybe I should ask my parents to bring me some tomorrow (obvs will not swallow it and will ask the doc in the morning if I can have some). In the mean time, I will mimic the motions of chewing to see if it does anything, LOL! Hey, I'll try anything at this point. :)

You probably can get away with just doing the motions, but the gun does work well. I believe it was 3x a day for no more than 5-10 minutes. If you overdo it, you'll make things worse! shocked

But that was the protocol they used in their accelerated patient release program, which I was enrolled in.
Posted 10/5/2014 7:07 AM (GMT 0)
I did some more walking tonight and I actually feel better, albeit I think I overdid it a bit and felt a bit dizzy. But now I'm going to have a good night's sleep without the stupid NG tubes. Hoping for at least a solid 6 hours before the surgeons wake me up (it's 12 and the surgeons start making their rounds at 6am).
Posted 10/5/2014 5:26 PM (GMT 0)

annadee said...
Pluot, I just spent the entire day reading your blog. Just want to say it's awesome. I am trying really hard to walk but omg, this jelly belly of mine is awful, it feels like my intestines will all just spill out when I walk, I have to hold on to my abdomen because that's the only way it feels remotely comfortable. The surgeons all keep saying it's normal and it's just gas, they did a CT scan. But omg, so, so hard. I have to somehow convince myself that my all my abdominal contents will not spill out if I walk... I did three laps today and had a shower but I'm still distended.

Thank you, I'm glad you like it! I feel bad about not updating it more nowadays but I honestly don't have much to say about my pouch anymore... it would be more like a regular diary about my life and what I eat, haha, which isn't very interesting :-)

Just wanted to say I totally had that jelly feeling too. I usually sleep on my side but the first time I tried to roll onto my side in the hospital bed, it felt like all of my organs sloshed over onto that side! Weirdest feeling and I was so scared that I had permanently moved my insides. Needless to say everything was fine... it's normal.

Hope the NG tube comes out soon, it sounds like you're on the up and up. Definitely take it slow but don't be afraid of food, you need it to heal :-)
Posted 10/5/2014 6:50 PM (GMT 0)
I can't lay on my side yet either. Hurts and feels weird.

My surgeon actually had me bring hard candies and gum with me and was chewing it the day after surgery.

I am on low res for 6-8 weeks after this surgery.
Posted 10/6/2014 12:46 AM (GMT 0)
Oh man, feeling a lot better today, thanks to your guys's awesome advice to move around more! Yes, it is hard as heck, but once I start and finish, I feel a lot better!! Maybe tomorrow I'll be well enough to stand up to shower... if not I'll still use the chair they have here at the hospital (I am nervous about getting my stitches and stuff wet, but I guess if the surgeon and nurses say it's okay, then it's okay). I can't wait to get off these steroids, they are making my skin super greasy, including my scalp (which was already had a bit of dandruff to begin with). I also can't wait for my hair to start growing back once I'm off the prednisone.

Also, I can't wait for the stoma nurse to come tomorrow and finally change my bag. She hadn't since I got sick, and I didn't have time to learn on my own, so I haven't had my bag changed since Thursday night. I got to say, it's starting to feel really disgusting, and once I'm home, I won't be changing it any less than every third day. Plus I am worried to see the skin underneath, I feel like it should be wiped more often... though I understand you can't really clean it with soap and stuff, just wipe with water and pat dry.
Posted 8/15/2018 5:28 PM (GMT 0)
Recently I completed chemo/radiation and removal of my esophagus due to esophageal cancer. During the removal of my esophagus, it turned out 4-5 days later that the NG tube was coiled in my throat. I kept on complaining that I was having troubles breathing, huge amounts of bile were coming up my throat, and the use of bronchio dialator meds were used. By accident when they went to test if there was a leak when swallowing, it was discovered the NG tube was coiled, it had to be removed immediately as i was literally drowning in bile at that point.
I overheard a Nurse during shift change explain to another Nurse that I should've had an Xray everyday to insure the NG tube had not displaced. I know I will think many times in the future if I need to have an NG tube inserted, might not happen if I have a choice in the matter.
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