WIBU to ask for some advice?!

[Mumtoone3]

So I’ve had ongoing gastro issues for a while (started off as reflux, pain and nausea and now swallowing difficulties, every single test has been normal apart from a very recent barium meal that showed a swallowing problem and thickening in my bowel). It’s got to the point where I am simply not eating or drinking enough so I was admitted into hospital for an NG tube.

Was admitted last week, they tried 8 attempts (the cut off is 3) and I just cannot tolerate it or keep the tube in.

The dietitans were lovely and couldn’t be better about the situation as they could see I was really genuinely struggling, however the gastro doctor was another matter! He basically told me that babies and children tolerated them everyday so he didn’t know why I was making such a fuss and I would have to force myself to tolerate the NG tube because he wasn’t going to give me any other options. I know that in fact there are other options - such as a PEG tube which is very easily fitted and can be whilst awake, and is very safe and easy to care for especially once at home - and instead of allowing an open conversation about this and listing the pro/con of why it is or isn’t the best idea - he basically just said ‘no’ and walked off.

He had an awful bedside manner, was very blunt and direct and said that because of another issue he was dealing with in the hospital that he wasn’t in the mood to be all nice and “fluffy” about things with me. He even said he would put a bridle in place to prevent me from being able to take it out so I would have to suffer it and keep it in despite him knowing how traumatic I found it (I have a sickness phobia and an extremely traumatic endoscopy experience which contributed to me really struggling with the NG tube).

I left and was discharged from the hospital in tears and not quite knowing what to do from here…

I rang the nurse afterwards and told her I am willing to go above this doctors head to at least be given the opportunity to explain why I think this other tube would be better for me, especially since the hospital have left me like this for months now…

Realistically though, all the other gastro doctors are on annual leave for 3 weeks and I’m not quite sure who else I could ask?

Advice would be lovely, if possible please!

PALS will be able to advise you. You think that you haven't had all the options given to you, so your care is lacking. I've only had experience of pediatric gastro and it usually takes complaints to be put on a proper treatment/investigation path.

What in particular are you struggling with for the NG?
Is it the insertion? In which case can you ask for sedation.
Is it the feeling once its in? In which case distraction, painkillers, and difflam (difflam works really well) and maybe try and give it a full few days to see if you can get used to it.
Is it the fact that everyone can see it and strangers on the street will know you're unwell? - In which case I would think about what psychological and family support you have. You're clearly unwell and likely to be unwell for a while, and coming to terms with it is going to be hard. Sometimes a visible reminder of that illness is the straw that breaks the camels back - just like a cancer patient and hair.

PEGs aren't easy. They can hurt, they, block they leak. And when they go wrong they're a pain. You need a surgeon to do things. They are also a huge infection risk (bigger than an NG) as its plastic going through the skin and bacteria can follow the plastic and get in the body that way. NGs don't break the skin and don't get infected like that. They are also far more fixable and replaceable. Most nurses can put them in and take them out.

You may also not meet criteria for a PEG. Where I am (with children), there are strict criteria for it.

I'm sorry your gastro doc has such rubbish communication and I hope you get the support you need during such a tough time.

PEGs are a nightmare.

www.ncbi.nlm.nih.gov/pmc/articles/PMC4069302/

A gastrostomy is a direct hole into the stomach through the skin and there are all sorts of complications, starting with infection, blockages and 'reflux', where stomach acids end up outside the stomach and burning everything it touches.

An NG tube is far more preferable, I'm afraid.

The main struggle is how it feels when it is in - every single time you swallow you are very much aware of the tube and how uncomfortable it is. I do understand there is slightly more risk with PEG due to it being an opening but it lasts longer, with an NG tube there’s also complications (if can’t aspirate or moves I would have to keep either calling the nurses out or going back into hospital to have it refitted and most tubes only last a few weeks before needing to be refitted again anyway, plus I’m at high risk for aspiration which can be complicated by the tube and cause pneumonia and I do suffer from reflux which NG tubes can make worse) and if someone absolutely cannot tolerate an NG tube surely there has to be another alternative?

I wouldn’t mind being told no if he sat down and had a proper discussion about it with me, but to just shut it down with no reasoning or alternative options - literally force yourself to have the NG tube or go home and get on with it - is what I struggled with the most

I did think about complaining about his general attitude and bedside manner but he is a very well respected doctor in the hospital and I really don’t want to burn my bridges with the gastro team especially if he ever needs to look after me again!

Difflam spray - you can buy it over the counter, its a local anaesthetic and numbs the area.
Then time, you will get used to it, if you leave it in long enough.
All the other side effects you mentioned, happen with PEGs. Except when they go wrong, community nurses can't sort them and they have extra complications. You have to go into hospital and see the specialists if there's an issue.

Please stop thinking a PEG would sort everything.

It is a procedure of last resort and is fraught with complications.

@Gingernaut

Please stop thinking a PEG would sort everything.

It is a procedure of last resort and is fraught with complications.

This could not be more correct.

There is some risk when a NG tube is placed. If you’re uncomfortable when it’s in, then yes, you probably need it numbed for a while so you can get used to it. No, it’s not easy, but it sort of goes like this.

Which is most difficult?

1. You figure out why you have a swallowing issue and until then, work out a dietician plan of mushed food or liquids. If your issue is aspiration, thickened liquids. I’m guessing this wasn’t possible, though, as you’ve had to go for an NG tube, so #2.

1. Getting used to an NG tube which is uncomfortable but very likely not dangerous once it’s inserted, and is probably more dangerous if you try to remove it yourself (I have no idea if you had been removing it yourself, as he was threatening to bridle it).

1. Keep trying doctors until one agrees to a PEG tube and if you think an NG tube is uncomfortable, I think you’re going to find having a permanent hole in your abdomen and stomach for the PEG worse. And when you say slightly increased risks, you’re talking about things like infection, necrotizing tissue, sepsis, blockage, and still a risk of aspiration, and now a risk of leakage with the aspiration. Oh, and pain. It’s VERY different. That’s why they only give PEG tubes when NGs are completely impossible. I mean, they often choose to try to feed many stroke patients like infants versus the risk of a PEG tube.

It’s definitely not an easier way. I would figure out exactly why you can’t stand the NG tube and try to fix that. Or I would keep pushing for reasons why you have the swallowing problems, so maybe you wouldn’t need either
(I have swallowing problems so I get it; I’m really sorry you don’t have the kind that can either be solved temporarily by thinning or thickening food. It’s really unfair ).

PEGS are very risky.

Would a port be an option eg one you can close and only open to insert feeding tube? Sometimes they do a drainage port as well.

I just want to clarify that I’m definitely not calling you foolish or stupid and I don’t think anyone in this thread is, so please don’t feel that way (in case you feel we’re all against your solution). It’s simply that sometimes, medically, how horrible one temporary option is in the moment (an NG tube for you, right now) can blind us to how horrible another more permanent option may be (a PEG tube) if it seems like a solution. I also want to say again, I’m sorry you’re going through this at all. It’s absolutely rotten, I know.

OP, as someone who works in a microbiology lab and helps diagnose all of the invasive infections people get from PEG tubes, I would really encourage you to stop thinking this is your solution. The Dr is right, it is last resort, there are so many potential complications.

@Mumtoone3 I had similar issues with eating and drinking, I lost 3/4 of my bodyweight and was suffering from malnutrition. My dietician had been 'threatening' me with an NG tube, but I was vomiting 10+ times a day, so my gag reflex was deemed too sensitive to tolerate it. At one stage, I was in a coma in ITU and had been fitted with an NG tube, but I kept pulling it out!

The alternative which eventually solved my problems was a PICC line. It's a large canula into a big vein on the inside of the top of your arm, which leads to your heart. It takes a lot of keeping clean and preparation etc. each time it's used, but I was given a litre of liquid nutrition over 12 hours each night. Once the line had settled and they were able to arrange nurses to come to my house each evening to set it up and each morning to take it down, I was able to go home with it. The nurses taught me how to do it myself, so after a couple of weeks I was able to do it all myself.

My PICC line stayed in for 3 months, which gave my stomach a chance to heal, and I finally managed to put some weight on! After a month or so of having the line in, I started to be able to eat and drink much more easily again.

It's not necessarily the right option for you, but perhaps worth discussing with the team? I really feel for you - I've had 14 endoscopys and despite having the maximum sedation, I fight them every time! Good luck, I hope you are much better very soon.