Hospitalized again/ NG for first time

Hello! I was recently diagnosed with Crohn's in January and had an 8 day hospital stay in Feb for a bad block but was able to get passed it with just medicine and diet.
I'm currently back in the hospital. I was tapering down on Prednisone and started to flare, went back up to my "safe" dose but it was too late, the flare came on strong. It wasnt the worst one ever, but I was extremely bloated and on Saturday I couldn't keep any food down. I knew something was off when I also started to throw up liquids which had never happened before. By Sunday morning I was severely dehydrated and worried about not being able to keep my meds down if I took them, so I went to the ER to get fluids. I didn't think I was so bad, just dizzy and dehydrated. It happens, right? Wrong. They did a CT And found I'm blocked again, I'm on an IV of 120mg of prednisone, two antibiotics, lots of fluids and for the first time ever an NG tube. the male nurse in the ER who put it in was very gentle (his daughter is my age and also had Crohn's, since I'm a newbie he said I should get used to this) unfortunately I freaked out the first time he put it in and made him take it out and redo it (stupid me). They admitted me and it looks like I'll be here at least another day, if the tube works. I'm surprised, I didn't realize my flare was so bad....the doctors told me the NG is to help take pressure off my stomach and if they can't that I'm going in for surgery. Needless to say, I'm freaking out but trying to stay calm. I didn't realize my flare was so bad...:eek2:

I have three questions:
1. Has anyone else had what they thought to be a mild flare and in fact is not? How do you know? Should all flares be treated as if they're the worst?

2. The NG tube is really bothering me. It's mostly where it meets the back of my throat, I feel as if I'm constantly choking. Does any one have any advice on dealing with the NG? I've had it in overnight so far... will it get easier?

3. I'm scared of surgery. I want to keep all of my bits as long as possible. Can I tell my doctor I want to wait on surgery until I start Humira? Or is it an emergency that they have to do it now? (Scheduled to start Humira within the next month )

Thanks in advance

Signs of a flare-up are exactly what you had - dehydration, vomiting, bloating/inflammation. It's a matter of recognizing the warning signs, and they are not the only ones. You did the right thing to go to ER.

I have been on the NG tube twice. It is very uncomfortable and it does not get easier over time. Both times I had to wear it for three days. The less you use your throat - and that includes talking - the better.

The purpose of the NG tube it to idle your digestive system so it can heal. It drains the bile from your digestive system to suspend digestion of food. You should be getting nutrients from IV. The IV prednisone will aid the healing process, but when I was on that high a dosage it took a few weeks after discharge for my body to recover before I could return to work - my muscle motions were screwed up. They'll remove the tube and start you on liquid diet progressing slowly to solids, while monitoring your digestive system. If your piping shows signs of movement and the blockage clears then the NG tube has done its work.

One thing that helped to pass the time with the NG tube was my netbook computer. The hospital has wireless and the netbook was great for surfing the net. A couple of good books to read helps too. I don't watch TV anymore because there is too much junk, not to mention that I don't need to see commercials of pizza and hamburgers with a tube down my throat!

No one likes surgery, but a bad blockage is not to be treated lightly. You are entitled to a second opinion but if it is an emergency then there is a serious reason that should not be questioned.

Good luck!

Thank you!
I recognized the symptoms of the flare but is it awful to say that I thought it wasn't that bad yet? I'm definitely glad I came to the hospital.

Is there anything you found to help the irritation? My throat is on fire and I have stopped talking completely, it hurts that bad.

Should I be receiving nutrients via IV? I've only had the NG tube in for 24 hours...How long can I go without receiving anything?

I've had NG tubes & it isn't pleasant. But a nurse showed me a technique that involved me taking a sip of water whilst she inserted it & as I swallowed so it went down my throat, that one time it worked a treat.
Obviously no one wants surgery, its a last resort but an obstruction can & has killed people because of bowel perforation. So its the lesser of two ills so too speak.
However some people have had great success with a Colonoscopy featuring a Balloon Dilitation, it all depends on the extent of obstruction & whats causing it. Active Crohns or old scar tissue, myself I've had very little joy & although I'm willing to give it a go & have done many times it usually closes up again within a few weeks if not days.
Crohns flares, the problem is even if you don't think its that bad if the same area has flared time & again then the area becomes damaged, sometimes to the point where only surgery is an option.
Good luck Aiyale
Grant

I agree that NG tubes are pretty awful. I've only ever had one and it was just in for 24 hours, but even so, it was not a fun time and I really feel for you. I unfortunately don't know of anything to help the irritation - the only thing that helped me was having the thing removed. I'm glad they at least put it in gently for you - when I had mine, it was so painful! I broke my nose when I was a kid and it didn't heal right, so I have a crooked nose and probably a deviated septum now. My right nostril is slightly larger than the left, so I asked the nurse to try the right nostril first. Well, apparently that nostril is no good, which I learned the hard way after the nurse tried jamming the NG tube in about 10 times without success. So painful! I had tears running down my face and she finally tried the left nostril and got it in on the first try, thank goodness. That was just a horrible experience. So yes, I'm also in the "I hate NG tubes" club right there with you!

As for not recognizing that the flare was this bad - flare symptoms and flare severity don't always necessarily correlate. You could have milder symptoms but raging inflammation, or horrendous symptoms but relatively mild inflammation. So don't feel bad that you didn't realize it had gotten so bad, it may be that it just truly didn't feel as bad as it was.

If you aren't receiving nutrients via IV, you should ask the doctor about that. At the very least, you should be getting IV hydration (particularly with symptoms like vomiting & diarrhea). If you can't speak due to the NG tube, write the doctor a note.

NG tubes and I are not friends.
I have had them a couple times, mostly after surgeries. I read somewhere recently that their use is diminishing. I found them of little use as I can only tolerate them for a maximum of about 24 hours. After that, the irritation actually starts to cause bleeds for me. I actually got my surgeon to realise that after one of my surgeries. As for putting them in, I pretty much need to be sedated. Huge gag reflex.

The 1st time I wore the NG tube I didn't have the gag reflex.

The 2nd time, it was tickling my gag reflex. Had to be careful with movement of the body and the tube.

And drinking water did ease initial insertion. That's the worst part of the whole procedure. It helped to close my eyes.

Im sorry I have not much advice on your situation. Maybe bitting Fresh ginger root (really small bite needed) if this is allowed to you, I notice this has anasthetic properties when I have sore throat. But ask the staff because I wouldnt want you to aggravate your irritation, as ginger is pretty strong. Basically just want to wish you best of luck for whatever is coming, hopefully a treatment rather than surgery.

I'm so sorry to hear about your pains.
I can't offer much advice except on the n-g tube.
My little girl has the disease and feeding tubes are a way of life for us.
I've heard and it was true for Grace that the first 2 days are the hardest to get use to.
After that the discomfort lessens or stops.
Please keep us posted.

We also have a N-G tube support group.
The link is under my avatar.
Please join and ask as many questions as you like.

I've had ngs many times. I found that it's a huge relief when they drain the bile from your stomach. I also found them perfectly comfortable after the first hour or so, I wouldn't even be aware they were there, I've had them for a couple of weeks at a time. There's a knack to getting them down, if you learn the right point to swallow it's very quick. Having them taken out is much easier than having them put in, so once it's down you've done the hardest part. I usually take them out myself now, if the nurse in charge lets me.

I'd avoid receiving anything via IV besides fluids if possible. I'm extremely underweight, and have had times when I wondered why they weren't giving me nutrition and calories into my bloodstream when I was on bowel rest. Then the first time I did have TPN, I got a horrendous candida infection, then had a mini stroke due to a complication when my central line was removed. (But a central line is different to a normal IV.) A doctor told me that if you have TPN, it's a question of when, not if, you'll get an infection, as sugar - which feeds bugs - is in contact with your bloodstream and the outside air. I got an infection after about one week of TPN. I've also had sugar solutions given via more simple IVs which are less problematic, but you don't get the nutrients you get with TPN.

Edit: I'm not sure if this would be relevant to the discomfort you're getting from the NG, but I've had a couple of occasions when the nurse wasn't sure she'd got the NG in the correct position, so they did an X ray to confirm (mine always were). I think this was related to how far it had gone down and it's position low down, but maybe they can check it's placed correctly in your throat somehow? It may be worth asking.

Reading through this thread it seems I'm in a minority as an NG fan. I actually made them delay taking out my NG on a couple of occasions because I was so scared of the pain returning. I'm not, however, a fan of NG feeding - my stomach can't take NG feed and I lost weight on it because I couldn't digest it, and had so much stoma output I had to switch to bigger bags while being fed by NG.

shamrock15 said:

As for putting them in, I pretty much need to be sedated. Huge gag reflex.

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Maybe this is why I don't mind them. I don't seem to have a gag reflex. I almost never vomit. When I had post-surgical ileus (which was one of the times I had an NG and the incredible pain in my stomach was just instantly relieved), they missed the diagnosis at first because I wasn't vomiting. Vomiting is a classic sign of ileus, but I didn't. I didn't vomit when I had a small bowel obstruction either. I haven't vomited for years and years despite having every other digestive symptom under the sun.

Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?

Clash said:

Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?

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The one I have in is about the size of a drinking straw. I'm not sure what the actual "size" is but that helps give you a visual. It does get taper into a much larger tube outside of the body as it drains, but the one inside (and I even looked in the back of my throat to make sure) is all about the size of a straw. I was told that they do have a child's size and next time I should ask for that since I'm having such a difficult time with this one. (But that it would stay in longer because it sucks less gunk up at a time....)

Clash said:

Am I right in thinking there is a difference in tube size for ng when related to suction and feeding. My son has never required an ng tube for suction, only for feeding. The size of that tube was 6fr(he was 17 at the time) so basically the size of a spaghetti noodle. I get the impression the ng tubes used for suction are much larger?

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I can't say I've noticed a difference or found either easier to swallow than the other.

I had an ng tube for 4 days with my last blockage and I'm no fan! It was very helpful draining stomach contents though.
They gave me a numbing spray for the back of my throat and that really helped. Maybe you could ask for that?

Yeah, wow a drinking straw is much larger than a spaghetti noodle! So sorry! And yes C's was for feeding so as long as he was able to get all his formula in overnight feedings size wasn't important. We asked for the 6fr since it was only the size of a spaghetti noodle and he knew it would be easier for him to insert and remove easch day for feedings.

Yes, NG tubes for drainage are a bigger diameter than for feeding. A little more uncomfortable to insert youself in my experience but not always more uncomfortable to have down because although they are roughly drinking straw size they can be quite soft and flexible.

For me the general rule has been that they either quickly become more comfortable (within hours or sometimes overnight) or they stay uncomfortable because the tube has been inserted in a position that causes irritation and once the irritation is there it stays uncomfortable even if the tube is repositioned. Actually I think I might be better to say that disomfort has gone away with time for me but a sore throat hasn't.

I had a very painful drainage NG once after surgery and like you had a really sore throat and could barely speak. It turns out that as I had been inserting it and trying not to vomit (sorry tmi), the nurse who was being my eyes since I didn't have a mirror to hand had miscounted the marks and told me to keep feeding it further when I needed to stop and with more tube length inside it was pressing against the side of my throat. The trouble was once I was able to check for myself a couple of hours had passed and although I then adjusted it to be better my throat was so sore that it never stopped hurting.

So do ask them to check the position but a small adjustment may not stop the sore throat, or it may already be positioned correctly and is unfortunately causing you irritation

Like you I needed the NG tube to do it's job at that point so I was allowed to suck throat sweets containing a little anesthetic to numb my throat a little but the anesthetic spray sounds like it could help.

It is horrible when it hurts (and this is coming from someone who doesn't mind NG tubes at all these days) but if you need it then you need it and I hope that you can make the sore throat a bit more bearable and that the NG helps the blockage.

Whenever I pull an NG tube that's causing any throat or ear pain it always goes away really quickly so that's a good thing.

About flares, as others have said it can be really hard to tell what your body is doing and to judge how bad symptoms are and what they mean. You are not alone in that and in addition you are really new to all of this so definitely don't feel bad about not being sure. You did well to go to the hopsital

You don't need to worry about needing IV nutrition yet and *fingers crossed* hopefully the blockage will resolve before it becomes necessary. If you do need surgery, I definitely understand being scared and reluctant to agree. It's natural to be apprehensive. Ask your doctors what kind of surgery they think they would need to do, because then maybe you can get some more info from people here about what to expect. Surgery can help a lot and it may be that you have scar tissue causing narrowing as others have said and if you have inflammation on top of that in those narrowed sections, that might explain the recurrent blockages. Surgery would get rid of those narrowings and should mean that you aren't in and out of the hospital with obstructions.

What are your inflammatory markers (ESR, CRP) like right now? Also where in you bowel is the disease located?

Clash said:

Yeah, wow a drinking straw is much larger than a spaghetti noodle! So sorry! And yes C's was for feeding so as long as he was able to get all his formula in overnight feedings size wasn't important. We asked for the 6fr since it was only the size of a spaghetti noodle and he knew it would be easier for him to insert and remove easch day for feedings.

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He inserted it each day? When I had NG feeding I kept the tube in all the time, and a nurse connected it up each evening, I was fed overnight, then disconnected each morning, and I just taped the short tube coming out of my nose to my face to keep it out the way during the daytime.

UnXmas he was given that choice as well. He had feeding for over 3 months(supplental for weight gain) so he chose self insertion/removal daily. He could choose to not change it out each day himself but usually did unless it was the weekend.


Edit to add: we had a training session with a nurse but there are some great vids on YouTube of kids showing how they insert and those were very helpful as well.

Clash said:

UnXmas he was given that choice as well. He had feeding for over 3 months(supplental for weight gain) so he chose self insertion/removal daily. He could choose to not change it out each day himself but usually did unless it was the weekend.


Edit to add: we had a training session with a nurse but there are some great vids on YouTube of kids showing how they insert and those were very helpful as well.

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He's braver than I am; I don't mind taking them out but I think I would have been too worried about getting it in the wrong position to put them in myself. All my NG tubes have been when I've been an in-patient in hospital anyway, so I guess that's why no one suggested an alternative for me. I do remember someone on this forum posting a link to a YouTube video of a kid putting in her own NG tube. This was a long time ago, before I'd had my first NG, and they posted the link to show how easy it was, but I couldn't watch the video without feeling faint and it confirmed my belief that I'd never be able to tolerate having anything inserted into my stomach via my nose.... I changed my mind completely when I actually had one! My first one was to drain my stomach, and when the pain eased, I loved having an NG. I wish I could say the same about things being inserted into my bladder. With that I used to faint every time. After having several catheters I'm not so bad now, but I still get woozy.

UnXmas, if supplemental overnight feeding is something that you think might help you then I think inserting your own NG tube is well worth trying. For me it was a much less frightening and uncomfortable experience than having a nurse insert it - which I hated.

I felt so much better being in control of the rate the tube was advanced and getting the feedback from my body so I could adjust as needed. And it's nice to know that you can take it out and reinsert when you want.

As to getting it in the right place you measure the length of tube to feed in and when it looks like you have that in the right place, you test for stomach contents with litmus paper (or that's how I was taught to do it). It quickly becomes something that you just do and don't worry about.

Thanks everyone for your advice! Just want to take a minute to update you on my progress:
I'm still in the hospital but no longer have the NG dusty After 24 hours it was rubbing my throat raw and sucking up a lot of blood, Doc said it was not serious but took it out just in case. I've been keeping down liquids and they have me on 40 mg steriods injections 4x a day, as well as flagyl and cepro for antibiotics. I'm not responding as quickly as they would like to the meds and I'm still pretty swollen and inflammed. I have had 2 BM since I've been here, one on Monday and one yesterday, both were diarrhea. We're waiting to see what happens now.

At my last visit before I got here (Friday) my GI was starting the ball rolling on Humira, they said they would really like me to start before I leave the hospital. The sooner I do the better chance I have of avoiding surgery. No word yet on how much longer I will be here or how soon I can start the Humira.

I'm not sure what my levels are right now, Im having blood drawn 2x a day and just last night (at one am!) my IV rejected. it took 3 nurses 4 sticks (and 3 blown veins that are now HUGE purple and black bruises) to finally get another IV going.

I'm trying to stay positive but on top of every thing I just received really bad personal news and I'm trying to not stress about it. I just want to get better and go home.

I will update you as soon as I hear more, thank you all so much for your kind words and support. :Karl:

Thanks for updating! Sorry to hear that you have had bad news. It is really hard dealing with life and Crohn's. :ghug:

Starting Humira quickly sounds good and it's good that you're able to keep liquids down. I hope that the meds do their job and you start feeling better soon!

24601 said:

UnXmas, if supplemental overnight feeding is something that you think might help you then I think inserting your own NG tube is well worth trying. For me it was a much less frightening and uncomfortable experience than having a nurse insert it - which I hated.

I felt so much better being in control of the rate the tube was advanced and getting the feedback from my body so I could adjust as needed. And it's nice to know that you can take it out and reinsert when you want.

As to getting it in the right place you measure the length of tube to feed in and when it looks like you have that in the right place, you test for stomach contents with litmus paper (or that's how I was taught to do it). It quickly becomes something that you just do and don't worry about.

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I have had overnight NG feeding while in hospital, my digestive system just couldn't tolerate the feed, it went through me to fast to digest it properly, so I wouldn't want it again regardless of who put the tubes in.

Glad to
Hear things are improving slowly .
Humira has worked wonders for my kiddo

Aiyale - keep going. When I've been in hospital and desperate to get home, I concentrated just on that: as far as I was able, I put other things out of my mind, and just thought about the signs that I was getting better and closer to the point of being discharged. Keeping down liquids and taking new medications are signs that you're progressing. And if you do have a setback, you just go on to looking for the next sign, no matter how small it may seem. It could be getting to have a conversation with your doctor or having a solid bowel movement or an improvement in your blood tests or your first mouthful of solid food - anything that shows you that things can change for the better.

I hope you'll get home soon. :hug:

I MADE IT TO SOLID FOOD! I'm so happy! (soft, low residue, low fiber, but oh so delicious food)

They think I might be able to go home tomorrow. Bad news is that I'm still in a ridiculous amount of pain and the inflammation is really high, but the doctors said at this point there is nothing they can do until we start Humira. So I just have to be extremely vigilant of any sign of a block and stay on soft foods, but hopefully this is my last visit. Does anyone have any advice on how to safely bridge this gap between going home and starting Humira? The last thing I want to do is be back here in a few weeks!

P.S. I will still be on prednisone during this time, but as I've recently learned it's not fool proof and I can still get a block. I also think I will have to finish the flagyl too.

That's great that you're able to eat some solid food! I have at times with sub-acute obstructions gone on either a liquid diet (EEN) or a mainly liquid diet - lots of soups, smoothies, sometimes ice cream and supplement drinks (Fortisip, Ensure, Boost).

EEN would also help with inflammation whereas soft foods or a partial liquid diet won't but will still help with the pain from the narrowing and reduce the chance of you ending up back in hospital.

While you are in the hospital, ask to speak to a dietician about bland diet. The goal of the bland diet is to eat foods that do not irritate the digestive tract or generate gas. The more you stay on it, the less likely you may develop inflammation and/or blockage. Not as restrictive as a liquid diet.

Glad to hear you are improving.

I'm home! :dance:
Thank you all so much for your advice and support during this last week, it means so much to me. :heart:

Aiyale said:

Hello! I was recently diagnosed with Crohn's in January and had an 8 day hospital stay in Feb for a bad block but was able to get passed it with just medicine and diet.
I'm currently back in the hospital. I was tapering down on Prednisone and started to flare, went back up to my "safe" dose but it was too late, the flare came on strong. It wasnt the worst one ever, but I was extremely bloated and on Saturday I couldn't keep any food down. I knew something was off when I also started to throw up liquids which had never happened before. By Sunday morning I was severely dehydrated and worried about not being able to keep my meds down if I took them, so I went to the ER to get fluids. I didn't think I was so bad, just dizzy and dehydrated. It happens, right? Wrong. They did a CT And found I'm blocked again, I'm on an IV of 120mg of prednisone, two antibiotics, lots of fluids and for the first time ever an NG tube. the male nurse in the ER who put it in was very gentle (his daughter is my age and also had Crohn's, since I'm a newbie he said I should get used to this) unfortunately I freaked out the first time he put it in and made him take it out and redo it (stupid me). They admitted me and it looks like I'll be here at least another day, if the tube works. I'm surprised, I didn't realize my flare was so bad....the doctors told me the NG is to help take pressure off my stomach and if they can't that I'm going in for surgery. Needless to say, I'm freaking out but trying to stay calm. I didn't realize my flare was so bad...:eek2:

I have three questions:
1. Has anyone else had what they thought to be a mild flare and in fact is not? How do you know? Should all flares be treated as if they're the worst?

2. The NG tube is really bothering me. It's mostly where it meets the back of my throat, I feel as if I'm constantly choking. Does any one have any advice on dealing with the NG? I've had it in overnight so far... will it get easier?

3. I'm scared of surgery. I want to keep all of my bits as long as possible. Can I tell my doctor I want to wait on surgery until I start Humira? Or is it an emergency that they have to do it now? (Scheduled to start Humira within the next month )

Thanks in advance

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The dreaded NG tube! My worst enemy. It feels like a pencil stuck in my throat and I'm not sure it breaks up the obstruction any sooner. I always ask for some drug to knock me out, so I can sleep through it all. Hope they take it out soon.

You really all find NG tubes that bad? Don't you find it helps with stomach pain when you have a blockage? It works better than a painkiller for me.

No, I'd rather do it without the NG tube. After 8-10 obstructions, I know it doesn't shorten my hospital stay and I need the pain meds either way.

For most patients with a bowel obstruction an NG tube does provide some symptomatic relief.

I'm really curious, peluchde, because this is the sort of thing that interests me apparently when did you have these bad NG experiences?

My experiences with NG tubes has changed dramatically since I first tried them back in about 2000. There have been some real advances in the materials used such that they now soften significantly at body temperature and that makes the NG tube much more comfortable for most people shortly after it has been placed.

Sorry that you had so many bad experiences with NG tubes. I know we're all different and will have different sensitivities but I also know that the choice of tube can make a big difference and I just wondered if it was possibly a factor for you.

So many people do find NG tubes useful for decompression with an obstruction or sometimes post-operatively as well as for feeding, so it seems a shame to think an NG tube is an inevitably awful experience.

All my experiences with an NG tube have been horrible. Most were during the 5 obstructions I had in 2010. Two times in the ER, nurses were unable to thread it down, resulting in multiple people trying the procedure. Kind if makes me uncomfortable when those caring for me, are not capable. The other times it was inserted properly, but the feeling of "a stick in the back of my throat" is so uncomfortable for me. It seems I end up staying equal amounts of time in the hospital with or without the tube. If I have a choice, I vote not to use it.

Thanks for answering, peluchde! That's bad that so many atempts had to be made. When someone skilled (and gentle) places an NG tube it should be really quick and with little or no discomfort. Kind of like the difference between someone who is really good at drawing blood versus the person who just cannot get a vein. And as I said I've just found so much difference between the older material NG tubes used in the past and the newer softer ones that I wondered if the same might be true for you. Here's hoping for no more obstructions

I'm sorry you had so many bad experiences, peluchde. Maybe there are ways to make it easier to have it inserted if you ever do need to have one again? The first times I had them, when I wasn't good at knowing when to swallow, I had one nurse inserting the tube and another nurse there holding a cup of squash (I hate the taste of water) with a straw that I held the end of in my mouth. The second nurse was also on hand-holding duty. She'd tell me the right moment(s) to swallow a mouthful of drink and the rest of the time she reminded me to breathe (breathing and staying as relaxed as possible do help).

Have you any throat problems, problems swallowing, or any other reason it should be so horrible for you? Maybe you have a motility problem affecting your easophagus? Having a feeding tube inserted is always uncomfortable, and can make you cough, sneeze and hiccup and cause your eyes to water. But it shouldn't be horrific, and it should be fairly quick - a few minutes. As I said, once I've had a tube in for around an hour I stop feeling any discomfort, and I've been told that this is how it usually is unless the patient has something wrong that makes it continue to be uncomfortable or painful, e.g. easophagitis.

Watching them try to put one in my son, was one of the worst things I've ever seen. They made 2 awful attempts and it was like watching my son get water boarded. He could not breath through much of it and it went on and on. I will never forget the horror on his face. After they got it in, my son was freaking out, as it was hurting him and they said they needed to xray him to see if they got it in the right place! When they said that, I demanded that they sedate my son and remove the tube. If "professionals" couldn't tell if it was in the right place, how could we once we were home?!

Honestly, I feel like I watched a couple of thugs torture my son. It was traumatizing for both of us.

I've had x-rays to check it's in the right place - checking with an x-ray is very routine. It can be in the wrong position without being dangerous, usualy it just means the tube isn't far down enough which means it is more likely to come out. I've had that happen, it's painless and not dangerous, but obviously inconvenient, so they check it's far down enough with an x-ray if they're not sure. I assume if it wasn't far down enough it also wouldn't relieve the stomach contents (if that's the purpose of the tube). They can check this by aspirating the tube, but if that doesn't work they do an x-ray.

Honestly like anything I think it depends on the patient .
Most adults/kids/babies are completely "ok" with it even if it's uncomfortable.

As was stated above xrays are standard
There are procedures to check placement at home ( outpatient as well)
I know many infants/toddlers who have them for sole nutrition and have not had any issues with use .

Strangely once I had one put in & it was easy but it was in my lung, this was immediately post surgery so i was drugged up to the eyeballs which probably made it easier. Quick x ray, withdrawn & put in a 2nd time...voila. But I've had some terrible NG experiences & after my last surgery in '12 I was getting more & more bloated & finally they decided to put a tube in. I was hooked up to monitors & when they failed to get it down the 1st time my heart rate was racing so much the nurse commented she thought I was going to have a major problem. Thankfully it went down easier after that but not an experience I want to repeat.
Grant

Yeah, I hated it the first two times when two different nurses tried to put an NG down - it doesn't help that my left nostril is impossible! Since I hated it so much I taught myself to do it and after a few tries found it really easy. Plus now that the materials are so much better I quickly find I'm okay with having the tube down. It's definitely been a really useful skill to learn and has helped me a lot in a variety of situations.

lenny, that must have been absolutely awful to watch and I feel so bad for you and your son. It's absolutely mandatory though to check the postion and in hospital they do that most often with an x-ray. It doesn't matter how skilled the person inserting the NG tube is you have to check the postion because there is no other way to be sure. At home, or when I'm doing it in hospital myself but not near an x-ray machine, I just aspirate some stomach contents (so lovely!) and you can check the pH. If you tube feed at home they usually have you do that every time you start feeding just to be sure it hasn't moved.

As UnXmas said if you're using it for drainage you sometimes need to check that the tube is far enough down to drain or not too far down and curled up in the stomach as it won't drain properly then either.

Hugs to everyone who's had bad NG tube experiences and wishes for only good ones from here on out - or no need for them at all.

I'm sort of curious to know about the range of experiences we all have with Hickman line placement because my first was not an experience I'd want to repeat...and yet I shall be soon. But that probably deserves it's own thread!

Is a Hickman line a central line? My central line experience is a whole other story - I never want one ever again! (Though I'm sure I will at some point. ) I don't know what kind mine was but it was in my neck.

A Hickman line is one type of central line that's used for long term intravenous access, necessary when you need TPN for an extended period or for people having chemo who need a line in place for a while. For a Hickman line they make an entrance incision at the jugular and then tunnel under the skin to an exit site on your chest - mine was just under my collar bone -and that's where you see the lumens hanging from when it's all done. The other end of the line is inserted from the entrance site and advanced into the superior vena cava (like other central lines) so basically it's the external/tunnelled part that is the biggest difference.

It sounds like your central line went into the jugular but was for shorter term use - perhaps 2-3 weeks? I've had a central line placed like that after surgery for about 1 week and also similar (i.e. not indwelling) central lines placed in the subclavian vein for 2-3 weeks.

Fortunately for those less invasive central line placements I either had fairly heavy sedation or a general anaesthetic but for the Hickman line I was told that I could choose to have sedation and/or painkillers but that it wasn't necessary - that people do it without. Happily I decided that there are no medals awarded for bravery in this and asked for sedation and painkillers (and certainly felt like some people thought I was being overly anxious) but I think next time I'll hope for a general anaesthetic since it was one of my least favorite procedures ever. My experience felt somewhat like lenny described, more like a rather brutal attack, and I shan't share the gory details but the first attempt failed and they had to start over a second time...and I was conscious and I remember most of what they said throughout too. Suffice to say that procedures involving "tunnelling" make me feel a little weak these days. And yet I have had a look online and seen accounts from people having a Hickman line inserted before chemo in which they describe very gentle nurses and doctors placing the line and the whole experience being peaceful with lots of hand holding and reassuring communication throughout so I guess that can be a very different experience too!

I woke up after emergency surgery with the central line in place for TPN, so having it placed was fine, but it went downhill from there. But I've told my horror stories on other threads here, so I'll avoid taking this one any further off topic.

I've had NG tubes several time, the longest 5 days. And I have a lifetime of gag reflexes. Knowing what is coming from prior surgeries has helped in dealing with it.

I have found that you can always slowly begin to rotate / tilt your head until you find the magic HAPPY SPOT where the NG is not felt. You have many hours ahead of you to experiment and rotate the head until you find it. Then you stay there or can always come back to it once you know where it is.

Anxiety is a big roadblock to rapidly accelerating NG trauma. Knowing how to lie there, breathe slowly and relax, before the NG anxiety comes, helps you cope. The anesthetic spray really helps. I must admit however that after 3-4 days the NG irritates the throat and these techniques become less effective.

With pain I have found the same thing with finding the happy spot: I can re position my hips ever so slowly until I find the happy spot. There always exist where that position is. You have plenty of time to find it !

For me personally I did not notice any difference in pain or discomfort between having the tube in or not. They said it was mainly to help prevent me from vomiting, but there was also a strong dose of zofran given so who know's how effective the tube really was.

Shortly after going home from the hospital I developed a severe sinus infection and what has now turned into bronchitis. My whole face is swollen and it feels like someone punched me in the face due to the pressure in my nasal cavity. Could this be related to tube do you think, or just a coincidence?

I read this: "The presence of an NG tube in the nose for an extended period may lead to damage to the ciliary epithelium and cause infection, which may lead to sinusitis." (Source here, warning not for the squeamish)

So I guess you may have unfortunately experienced that complication despite only having the tube in for a short time. Have you spoken to your doctor?

24601 said:

I read this: "The presence of an NG tube in the nose for an extended period may lead to damage to the ciliary epithelium and cause infection, which may lead to sinusitis." (Source here, warning not for the squeamish)

So I guess you may have unfortunately experienced that complication despite only having the tube in for a short time. Have you spoken to your doctor?

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I did, and they told me they don't think it's related. But I never have had sinus issues in the past....I can't help but think it's just too close together to rule out. Hopefully the antibiotics kick in and I feel better soon

One of the main reasons Grace had to get a gtube was because the n-g tube was damaging her sinuses. She however had hers for 3 months.