My first NG tube experience

It’s probably pretty rare for someone who has had Crohn’s disease for 16 years to have never had an NG tube. While I have dealt with my share of complications from IBD, I have never dealt with a true bowel obstruction, either before my surgery or after. I have had a couple of times where I have had smaller blockages since getting an ostomy (and I realize now that saying “major” blockage was a gross overstatement) and wrote a post last week about my first two hospitalizations during my pregnancy. Well I just wrapped up my third hospitalization, making it 10 days in the past 3 weeks that I’ve spent there. And this one was by far the worst.

So let me just say that an NG tube is one of the least enjoyable things I have ever had to deal with because of Crohn’s disease. I’m not trying to scare anyone who is faced with getting one, but I also want to be honest about my experience. Especially because for something like this, it really helps to be prepared prior to getting one.

For anyone who doesn’t know, an NG tube is a tube that goes in through your nostril, down your throat and into your stomach. It can be used to pump food or medication straight into the stomach or can be used to suction out what’s already inside.

This story started around midnight last Thursday, when again I woke up with pain around my stoma and almost no output. I spent the day dealing with the pain and praying it would pass. Then, around 5:00 that evening, I started throwing up. Occasionally at first, but by the time I went to bed I was getting up every half-hour to hour to throw up, even when there was nothing in my stomach. I couldn’t even get water down at this point. My husband ended up driving me to the ER around 2:00 a.m. despite how much neither of us wanted to go back there.

They checked me into the Labor & Delivery floor to make sure that everything was fine with the baby, and thankfully everything was. I was begging for IV fluids at this point because I was so severely dehydrated. They started talking about an NG tube, but since I hadn’t thrown up since I’d arrived they held off at first. But once I threw up again, they decided it was time.

For me, I needed the NG tube in order to pull out all of the contents of my stomach and some of my intestines. The idea is to remove as much as possible in order to allow your intestine to relax and move the rest of the contents along. When the nurse first came in, she straight up told me that it was not going to be pleasant. Of course I knew this, but I wasn’t quite prepared for how difficult it would be.

They insert a long plastic tube that goes in one nostril and once it starts moving down your throat, you have to keep swallowing in order to help move it down to the stomach. Now I don’t consider myself to have a particularly strong gag reflex, but as soon as that thing got past my nostril and into my throat I couldn’t help but start gagging, and ended up coughing it out my mouth and having to start over.

ng tube crohnsOn the second try, they were able to get it down my throat, despite my crying and gagging and, yes, puking, as it went down. What made it worse, though, is the fact that since my internal organs are all out of sorts because of my pregnancy, they weren’t exactly sure how far in it needed to go. They ended up having to twice move it down even farther. I don’t really like showing pictures of myself like this, but this was the reality of how I was feeling after finally getting that thing down my throat.

I kept hoping once it was in that I would just get used to it and at least somewhat forget it was there. No such luck. It felt like I had the worst sore throat of my life, as every time I swallowed or spoke I could feel the tube rubbing my throat. Then you have this giant tube coming out of your nose and connected to something else that will either pump things in or pump things out, which makes it very difficult to really do much of anything. I slept a lot that day, I think just so I didn’t have to be so conscious of it.

With all of that said, I do have to admit that it made a huge difference. I had the tube in for probably 30 hours, which I realize is a very short time compared to what many others have been through. I have so much more respect for those of you who have dealt with NG tubes much more often and for longer periods of time. Within about 12 hours for me, it alleviated so much of the pressure that had built up in my system and things started really moving along! (To the point that I woke up and my bag was coming off it was so full. Tons of fun at 3 a.m.) But I was thankful that it meant everything was starting to move again and the fact that I was able to leave the hospital just 2 days later. And I was in so much pain from the blockage previously that regardless of how horrible the tube was, it was worth it.

I was being cautious before about what I was eating, but now I am having to stay super vigilant with what I eat for the final few weeks of this pregnancy in order to ensure that I don’t have to return to the hospital for any reason besides a baby on the way! (And hopefully no more NG tubes.)

20 thoughts on “My first NG tube experience

  1. veganostomy

    🙁 I was REALLY hoping that you’d be spared the NG tube. It really is one of the worst experiences I’ve had to go through in a hospital – far worse than my surgeries or colonoscopies!

    Fortunately, they don’t stay in for very long, and I hope you never have to experience it again!

    Reply
  2. Sarah Inman

    Feel for you. NG Tubes are still on my list of some of the worst hospital experiences. Even with surgeries and other procedures. Nothing quit as bad as a something foreign going in your nose and then having to swallow it. And you can feel it every time you move. As a child I always tried my best to drink all the stuff they usually pumped in through the NG tube. I think I finally did it as a teenager.

    Wishing you continued good health!

    Reply
  3. snpadmin11

    I had to endure that last year when I had a blockage; it really was horrible but it did the trick and helped relieve the pressure and pain I was in, and eventually it did the trick. Glad you got through it ok – just be extra careful about what you’re eating.

    Reply
  4. Shirley

    I had one put in during my emergency surgery because the blockage had given me a horrible infection. I was in icu for 7 days after my surgery..I couldn’t have anything by mouth until they could take it out, nor could I leave icu. But, I was so happy they did it while I was out! My husband had to have the tube put in several years ago, while he was awake, and he still says it’s the worse thing he has ever had!!! Sorry you had to do that, then to be pregnant, is awful! Hopefully the rest of your pregnancy will be uneventful!

    Reply
  5. Molly B

    Stephanie prayers you never have to go through that again! We are familiar with them so feel your pain. Take care, stay hydrated and healthy till baby boy Hughes makes his entrance! 🙂

    Reply
  6. Mary Zullig

    Stehpanie, you continue to show strength, character and honest openess in every situtaion! You are one amazing lady and you remain in my prayers!!

    Reply
  7. Jan Jones

    I had an NG tube when I my colon perforated in March. It was no fun but without it, I am sure things would have been worse. I have been reading your blog since released from the hospital with my stoma and 20 inch wound incision. You have given me hope and have been a great encouragement! I am praying for all to go well from here on out for you and your baby. Keep on keeping on! God bless you!

    Reply
  8. katesowen

    You’re amazing Stephanie. Sending you positive vibes for the remainder of your pregnancy… and agreed, NG tubes are terrible, hope you can avoid them during this final stretch. <3

    Reply
  9. Victoria

    I feel your pain I endured an ng tube for 6 weeks during a long stay in hospital for chrons related perforated bowel & sepsis. They are so unpleasant but the hospital have you & your baby at heart & keeping u strong means keeping your baby strong. You are a fighter & your blog has been a massive help to me, so Thank you I wish you all the best & hope you are well soon
    V x (uk)

    Reply
  10. Andrew

    I got diagnosed in nov 2014. With crohns. Well I know what you’re experiancing. Honest stray strong have faith. And stay close to a good medical team. I have one in hamilton ontario. And it’s not only saved me but made a huge difference in outcomes. Oh and congratulations on the little one. smile glad you’re home

    Reply
  11. Nancy

    Wow, this kind of scares me. I have been complaining to my surgeon about horrendous pain around my stoma when having movements, he said there’s nothing wrong with it. Now I get to worry about blockages. No one vet warned me that this could be an issue.

    Reply
  12. Kate

    Stephanie, I think your posts on obstructions are so helpful and only wish I’d known about them when I first started having obstructions. I have a few tips on NG tubes that others may find helpful from someone who considers themselves a pro (I passed an NG tube very night for three years for tube feeding, removing it in the morning and have done it a dozen more times since).

    First, make sure you’re using the right tube. If it’s only being passed for a short period you may not need a long term tube with a guide wire but a more degradable, flexible plastic tube without the wire. I personally find these much easier to pass. Second, if you can do it yourself. It sounds strange but it’s so much easier to pass your own tube, then you have control over the process and can more easily bypass your gag reflex. Third, make sure you’ve got all the kit you need to hand – water with a straw (for sipping once the tube hits the back of your throat), KY jelly to lubricate the end and get it down your nose, tape to secure (micropore is best). Fourth I’ve always measured the tube before insertion from nose to the mid point between belly button and top of ribs and marked that point on the tube with marker so I’ve got an idea of when to stop feeding it down (I’m small so they are often too long and the tendency would be to keep going!). Finally, go slow. Whether it’s you or a nurse passing it, there’s no point rushing, it’ll stress you out and make the gagging worse. I’ve always found slow, controlled feeding in, sipping water through a straw along the way works for me.

    Hope that helps others.

    Reply
  13. Dawn

    Best of luck to you..so glad I have someone to chat with about ostomies!😊💩 Hope everything goes well!
    I jad my surgery 12/20/16 so, still learning and the worst I came across so far is some severe inflammation next to “Stewie” that isn’t getting worse, just kinda hangs around.
    Good luck🍀

    Reply

Sit down, stay a while. I'd love to hear from you.