hello fellow oesophagectomists if there is such a word ,im curently on my fourth dilatation for swallowing problems unfortunately once dilated it only lasts about a week to ten days before i start to have a feeling of pain and blockage , i can then make myself sick but all that comes up is a frothy sputum ,i wondered if any others of you have suffered similar and what they have done to sort
Thanx for reading
Graham
Hi Graham, sorry to hear you are having problems, I had two dilations and was due to go for a third when I got flu like symptoms, it was so strange because when I started eating again after three days, I was fine, never had problems again and that is four year ago. Just a fluke, however I have never been able to be sick, sometimes get the frothy stuff, and am able to cough things up occasionally, but the oesophogus is a musle and from what I am led to believe we can swallow most things because it goes down but have not the muscle required to bring things up, which is very difficult when you get the sickness bug, luckily mine passed after seven hours of reaching without success. I hope you will have success eventually. I think it was five months before I could swallow properly.
Hi Bernadette thank you for the reply, so pleased your not strugling too much with eating now it seems silly to be worried about early problems when in the greater scheme of thing we are all still here and not a statistic anyway keep smilling and helping hope soon you are back to full health
Hiya, I am 5 mths post op. I have the same problem with swallowing. I have had 4 stretches and mine only lasts a week as well. I wouldn't even say I can eat what I want. I swallow pills most days and this is a problem, some days the pill can be coughed up hrs later still totally intact (weird). I have also had phneumonia and 4 chest infections which gives me constant coughing fits through the night. I have been put back on the feeding tube as my weight loss has been dramatic since the op. I really did expect a miracle after the op, god how wrong was I. I just pray that one day it will all b ok. Feel like my life has been totally destroyed as ime pretty much stuck indoors 24/7..
thanks for the reply and as you are feeling ,so am i, even with all the support in the world its realy hard to see the light at the tunnell end .
i have recently made friends with an 11 year post op patient locally and it is helping me no end i am a phone call away and any question asked is answered immediately rather than having to wait which is a great help i must say,I hope your struggle is short and you settle down to a routine that suits you but this site is a fantastic aid to our problems dont you think
There does come a time, a few months after surgery, when people do often get low with the thought that they are simply not making the progress that they had expected. It is major surgery, and your body does take a long time fully to recover. All I can say is that for most people it does gradually get better, and that it is a stage at which many people find to be the most difficult. It is not helped by the fact that sometimes the cancer is diagnosed when one is not feeling particularly ill or weak. But you sometimes do need regular procedures for a while to make sure that you keep on the right track.
Swallowing can be affected by whether or not the surgical joint is narrow or not - and sometimes scar tissue affects this - acid reflux sometimes leads to inflammation - and sometimes there might be a fungal infection (candidiasis). So do keep persisting with returning to the medical team, because usually they can do something to help, but sometimes they do allow a certain amount of time to see whether the body heals itself.
Coughing is very debilitating, and I totally sympathise. The chest cavity has had a lot of things going on inside it. I felt at one time that I always had the cough and the doctors could never do anything about it. It was almost as if there was a permanent irritation. But it did sort itself out in the end. Sometimes specialist antibiotics helped when there was an infection.
Emptying of the stomach can be affected by the pyloric sphincter (the valve at the bottom of the stomach) and this does often get stretched when there is an issue. There is no real problem with repeating this procedure a good number of times, but that is not to say that you are not entitled to feel distressed each time, especially when the food never seems to go anywhere. At least the fact that things improve afterwards for a while does indicate that they have found the location of the problem. I suspect that the surgeons would be wary of stretching it too much at a time because the pylorus also has a function of stopping bile rising into the stomach from the other direction.
If the pills are not going through the stomach, they are probably not being absorbed into your system, and it might be worth trying to take the medication in liquid form perhaps?
One other thing that happens is that the vagus nerve, that controls a lot of these functions, has to be cut during the surgery. So the body has to find other ways to cope, and this takes time.
It is not like recovering from lots of other operations - it does take much longer, and is apparently an endless period of feeling weak, sick and unable to eat properly. But I do think that it can be helpful to think back and take comfort from what progress you have made since coming out of hospital. Every little bit of improvement is a step in the right direction even if it is two forward and one back.
My thoughts are with you in dealing with these issues. If I may, could I ask you a few questions to better understand your situation?
1. What type of esophagectomy was performed, and how much esophageal issue was removed?
2. What type of diet are you currently eating?
3. Are you taking any medications that affect the muscular function, such as metoclopramide or erythromycin?
As these problems can be caused by a variety of factors, I hope to provide a few points to consider once I know a little more about your situation.
Hi Chris it was the Ivor Lewis 2/3rd removed with partial 1/3rd stomach plus lymph nodes, medications are paracetamol, omeprazole, Tramadol, oramorph for breakthrough pain, my diet is the same as post op i can eat anything , tho one strange thing is that for 30 years i have been allergic to chocolate but since my op, i love and eat it like it was going out of fashion
Hi
It is almost 11 years since my op. For the first couple of years I had to have a dilatation every couple of months but over the years the time between them got longer. I now need one about once or twice a year. Everybody varies but I have known others who needed one every couple of weeks for a while. As Alan said it could be related to the amount of scar tissue/narrowness of join or inflammation from acid reflux or swelling from infection etc. I always find that my coughing gets worse when it is coming up to the time that I need a stretch. Maybe bits of food go the wrong way (into the lungs) rather than into the stomach when the join gets tighter.
Don't despair, go back to the team when you need to, and ask if they have any idea what is going on. For me it did get lots better with time. I eat mostly what I like but I do have to be careful to cut it up, take time to chew, and not eat too much.
I hope yours gets better too.
best wishes from
Krysia
I forgot to say that when food does get stuck I produce copious amounts of mucous which sometimes comes out as huge frothy bubbles. I think it is the body desperately trying to lubricate the food to make it move down. I know it sounds weird but sometimes these bubbles are actually quite beautiful - like blown glass baubles for a christmas tree. I think this is my mind trying to dissassociate/distract itself from the umpleasantness of having food stuck! Minds are funny things......
It may be a physical narrowing at the site where the esophagus was rejoined to your stomach, but sometimes these symptoms are also due to food being retained in the now smaller stomach. Surgeons sometimes perform a myotomy of the pyloric sphincter to decrease these problems and make sure food flows properly out of the stomach. When there is gastroparesis, it can make swallowing more difficult and feelings of nausea or sickness to occur.
Prokinetic medications (metoclopramide or Reglan; erythromycin) can speed the transit of food out of the stomach. These are routinely given post-op by some surgeons.
Fatty foods (such as chocolate or dairy) can slow the transit rate through the stomach.
It may be that your dilations helped by stretching out the junction, or it could be that the fasting required for the procedure helped clean the stomach out a little. Big thing here is to not assume that it is a narrowing, and look for other potential causes.
I have had regular dilatations since my operation over two years ago but they do seem to be becoming less frequent now. Interestingly as mentioned above, my cough seems to get worse as I approach the need for dilatation and I get a lot more blockage, not from food, but mucus predominantly.
I've almost got to the point where I look forward to them!
As always, tiredness and stress contribute to making things worse and I've really noticed that the cold, miserable weather has made everything hurt more (scars, ribs, where the join is etc.).
Peter
Hi Peter
You mentioned tiredness, well over the last month or so i have found i have needed a nap after lunch, is this supposed to happen or am i just doing too much
I try to walk everyday but become fatigued quite quickly
Graham
Hi Graham
I have a sneaky feeling that as we start to feel a bit better, the more we do and sometimes the body says enough and tiredness kicks in again. I find it comes and goes but I definitely think it's linked to doing more as recovery continues. I also need to exercise more to re-build stamina and as you say, eating can cause tiredness too.
Peter
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