I'm 54 years old and eight years post IL. I had half my stomach, two thirds of my esophagus and four lymph nodes removed. I relocated to Taiwan for a less stressful life, where I teach English 16 hours a week and reap the benefits of an excellent health care system. I exercise regularly, down the gym, love hiking, cycling, and am teaching myself to surf. I also (pre COVID) SCUBA dive regularly, having worked as an instructor. All said, I lead an amazing life considering, and thoroughly appreciate how lucky I am, not only to still be alive, but to be enjoying such an amazing quality of life.
HOWEVER!!!!! Occasionally I suffer from really bad GERD. I'm very good at managing my diet and medication etc, but when it happens I find myself up half the night, kneeling over the toilet, coughing up bright orange flehm mixed with stomach acid. This burns my lungs, trachea and sinuses, I feel like hell the following day, and it can take up to three days to fully recover.
I am sharing this here because I feel like nobody understands how I feel and what I am going through. Friends, family and colleagues are sympathetic, but I'm left feeling like no-one truly knows how I feel, because they have never experienced this for themselves (and I hope they never do).
So yes, I am sorry for feeling sorry for myself. 99.9999999% of the time I am sooooo happy and grateful for being alive and so well. But today I feel really sick and sorry for myself, so I decided to write here, knowing that this will be read by people who truly know and understand how I feel. Thank you for reading and bless you all. X
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Makulit
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Most of us on here, like you, are mostly positive and are making the best of our lives. Having said that, we know our lives have changed massively and will never be the same again. You are right, our friends and families offer great support but will never know what we feel. Don’t beat yourself up about feeling sorry for yourself. I think we have a right to have occasional down days and miss our past lives a bit. Have a good Christmas. James.
Thank you James. It seems to me that people think I'm some kind of emotional sounding board. They all come to me with their problems, thinking I'm some sort of rock having survived such a horrible cancer. There seems little consideration for my feelings and well being, it's just assumed that I'm happy to be alive all the time. Do you have the same issues with GERD? It's quite rare that I get it that badly but last night was horrible.
I know exactly what you’re talking about. I’m 15 years post ectomy and living with some side effects from surgery, reflux is one of them. Most of the time it’s manageable with diet and my elevated bed, but sometimes when my stomach is upset nothing helps and I get what you just described. It’s really awful! It burns like hell in your throat and airways, and I’m always scared I will get pneumonia after such episodes. From what I understand this is bile flowing back and it’s really nasty. As you say it can take a couple of days with phlegm and cough to recover. People with normal anatomy will not experience this so it’s hard to understand how awful it is. Take care.
hi I am 10 years since my operation and I totally get where your coming from , that acid yellow that comes up hurts like hell I put a very cold flannel around my neck while this going on and like you it takes a few days to recover, but we are survivors, so keep going young one I am now 74 , think of you x
I am 5 years post surgery and I know exactly how you feel when one has that terrible episode of aspiration of that bile. It always happens while sleeping and therefore causes the painful episode of the aspiration.
I was getting multiple episodes of aspirational pneumonia and if I fortunately avoided the pneumonia, I was sick for 1-2 days with all the pain, lethargy and coughing
After sleeping in a bed where I was able to incline the head, I still was sliding down in the bed a couple of times a month and thus causing the reflux of the bile. About 9 months ago I bought a recliner where I can control the head separately from the legs, and my world has changed. I rarely am experiencing the episodes of bile and aspiration of the bile.
Quick question. Have you had your esophagus stretched? That also helped reduce these episodes.
Hi Makulit.. I’m 53 and just 20 months post IL but I’ve experienced this orange phlegm stomach acid more times than I would like already. The burning and the taste is just awful. I don’t think you could explain to anyone how sick it makes you feel. I’ve recently gone gluten free and it’s helped me so much. No more bloating or acid reflux.. (🤞) I miss bread though I really do and I feel sorry for myself over that! We are all so lucky to be here and we’re all grateful for every day we have but we are allowed to feel a bit sorry for ourselves too.
It’s so good to read how well you’re doing too. We’re always here to listen. Sue
hi Makulit - I can totally understand this and feel exactly the same! Life is great and when you have been through what we have been through it feels so great to be alive. BUT, at the same time when the awful reflex happens it is so painful and upsetting! I am 10 years post op and still occasionally have this issue. When it is bad, it seems to take me a few months to settle it down again but I have pinpointed what brings it on for me which includes eating bread, eating too much and overdoing alcohol. When I don’t do these things I find I am mostly all good, it is so hard though to forget and over indulge occasionally ( especially with Xmas coming up!) I started to make a diary of what I was eating which gave me a clear picture of what was the main causes - also keeping as propped up as possible at night also makes a difference. Keep on enjoying life and I wish you all the best!
Hi MakulitI know exactly how you feel, I get this too ! I have had a full removal of my oesophagus and half my stomach removed back in 2013. In the last Yr I have had 2 tummy stretches which helped a lot, it stopped all of that for a couple of months each time.my consultant said I may have to have this done once a year , which tbh I don't mind, he also said they could move my stomach back down a little but that wasa major operation, which tbh I don't fancy that unless absolutely necessary.
My family are sympathetic when this happens, but like you, I know they have no idea how bad it is. I lose my voice for a few days , my throat is always so sore. I have also had aspiration pneumonia a few times because of it.
So you don't have to feel alone, because your not. Feeling sorry for yourself is absolutely allowed too, but I'm guessing like me, you pick yourself up and get on with it.
I tend to write here too, just to vent and you guys are amazing, keep your chin up. X
I'm 8+ years in and you have described my life to a T! I constantly try to remain grateful for all these bonus years but also allow myself an occasional pity party - guilt free. What we've gone through (and are going through) is painful, challenging, and definitely not normal and if I need some time to let go of the public facade, I do.
Hi. I occasionally have this as well I'm only two and a half years post IL but like cavalier3 I eat gluten free as I also have coeliac disease. It really is the most horrible taste and my throat burns for the whole day and my voice is very croaky. Yes my family are very supportive but they don't really understand. I find certain gluten free breads and potatoes are the things that seem to cause the discomfort so I avoid them.Keep going and enjoy each day when you can. It OK to feel sorry for your self after these episodes as they can male you feel ill for a few days afterwards but things always het better.
This ia a super group and it helps to talk about your worries with others in the same situation
I have the same just sometimes but when it hits I really don't know what to do with myself and it takes as you say at least a couple of days to get over it. I also am petrified it will turn into pneumonia again as it seems to be a 50/50 chance. Glad you are well most of the time have fun and be blessed with many smiles xxx
Yes Makulit, I know exactly where you’re coming from!
I had my Ivor Lewis in June 21 and made a brilliant recovery.
However in October my bowel ruptured through my diaphragm and up into my chest, requiring emergency surgery.
Prior to this I had been vomiting just as you describe for about 2 months, so whether this was the cause of the rupture, they’re not sure.
Following this last bout of emergency surgery I have been unable to tolerate anything other than a liquid diet and even this can cause me night time problems.
What remains of my stomach refuses to empty properly so the team are now talking about some type of motility drugs.
Hopefully this might sort the problem . Like you I’m so glad to be alive and enjoying life but it’s a long long night when you’re feeling grim and vomiting every hour leaving you empty, sore and exhausted.
And you’re right, nobody really understands except us survivors on this site!
We are allowed to feel down sometimes but in the main we’re just happy to be here.
I wish I had a pound for every time someone says “you look so well” when sometimes I feel grim, but I just smile and get on with it because I know I’ll feel better soon .
Go on enjoying life but know you can come here for a moan when you need to !
I am soooo touched by all your replies, I really wasn't expecting this. I wouldn't wish it upon anyone, but it does provide some comfort knowing that you are out there and you understand. Thank you soooooo much.
I live so far from home and I do have friends here. However this last episode was bad, I had to tale a day off work. It's impossible to describe to people exactly what you're going through. However sympathetic they may appear, I can't help feeling they think I'm exaggerating the severity of this.
Thank you all for being there and being so supportive.
hi Im sorry to hear this but I envy the fact you can do all these wonderful sports. I get reflux every time I wash my hair! and usually when I cough. My go to is Gaviscon Advance. Lots of great advice here.. Where would we be without this forum. But do wish the doctors and dieticians would read this for insight. I explain to people that what we’ve had is like having your leg cut off , you can walk but it’s not the same as before. Hope this clears up soon. Merry Xmas.
it’s gross mate..only solution I found is to sit very quietly on the edge of the bed and swig gaviscon out the bottle till it’s nearly gone ..not much help but can’t see any other solution..part of our lives I guess..good luck mate sounds like the rest of your lifestyle makes up for the bad days 👌🏻
not bad mate..took bout 10 days to get over this last cycle,but dumping everyday,over what seems like everything…had a couple of beers tonight and thought 🤷🏻♂️😁😁..still..got a clear run apart from chemo for tablets till Jan 6th..hopefully get out for a few walks this week to lift the spirits..😊..how bout you..? All better now I hope
getting there. Was still being sick most nights even on very sloppy almost liquid diet. Got in touch with specialist nurses who took my case to MTD on Friday. Consultants think I’ve now got gastroparesis so contacted my GP to get me started asap on Eryththromycin which although it’s an antibiotic has been discovered to be a good motility agent in cases like mine, where the stomach isn’t emptying.
Anyway not been sick since Friday so feeling much better.
Glad to hear you’re getting a little break. Have a great Christmas and I’ll speak to you soon. X
My reflux is much worse (7 years out from IL) than it ever was before I was diagnosed and from what I read adenocarcinoma of the EGJ is only caused by reflux. The most effective treatment I have found is Gaviscon Advance; I take it during waking hours at the first hint of heartburn and go to sleep every night with two tablets in my mouth. I never would have found it without this website, since it is not marketed in the US. It definitely helps. Cheers, Worth
Hi, Makulit. I'm sorry you have to go through this and you're right - no-one really understands what it is like, except those who have gone through it themselves. It's especially difficult having to remind people that you have permanent health issues, especially when, like a lot of us, you are going to great lengths to be (and appear) as well as possible. But you're always welcome to come here and vent. No-one can be strong all the time. All the best, FKM.
Makulit—we’re all survivors, in some different ways. My diagnosis (esophageal junction) was spring of 2017; had chemo and chemo/radiation, IL surgery February 2018, and good recovery. I was fortunate the tumor discovered by accident, before symptoms. And by contrast with what followed, dealing with cancer was a walk in the park. Year and half ago belly pain, constipation led to ER who mis-read x-ray, CT scan; only on revisit four days later discovered colon loop herniated, strangled. Emergency surgery at Mass General, lost half my colon and ileum, gained an ileostomy. Week after, severe dehydration damaged kidneys, heart—and couple days in cardiac unit. Two months later ileostomy reversed (another open surgery); went from 185 lbs (pre-cancer) to 128 (post ileostomy reversal). Combo of chemo plus kidney/heart issues exacerbated osteoporosis: two collapsed vertebra took away two inches of height. Slow recovery included search for foods to help gain weight, keep kidneys and much-altered GI tract happy. Now finally some equilibrium: up to ~158 lbs on a mostly white diet (lots of chicken and pasta; broccoli, too, and cheese sauces). Also back to regular cardio, weights at the YMCA.
Though I don’t share the pain of your GERD, I’m a singer in that choir of “Thanks, I’m just fine”. In a sense I suppose we bring it on ourselves, by seeking normal, trying not to stand out. It’s not strange that most family “things” (like Christmas, celebrations, birthdays, weddings) involve eating, often at a groaning board I help load. While everyone else laughs and shares news and stories over plates heaped high I dish out my measured limit, knowing from painful experience what one fork over the line means. Even with small helpings, because I have to grind food fine with my teeth (what normal folks do in the stomach fundus) it takes me longer to clear my plate.
I’m the only one at the table with 1/3 a stomach, shortened small intestine (minus ileum), and half a colon struggling to manage bile it was not designed for. If I’m not riding herd the poor-me-pity-pot is so easy. It’s so easy to imagine another version of that first ER visit, to see me sit up in the bed, hospital gown flying, grab the x-ray report and scream at the staff “what the hell do you think ‘colon loop in thoracic region’ means?” And then none of this would have happened.
But happen it did. And the sane part of staying alive is forward, not back into a past that never happened. And I am alive, on the right side of the grass, and I’m thankful for it and for a mostly sound mind—at 82. If the snow gods are kind to us in the northeast US this winter we’ll get some good snow and my wife and I will get in some cross-country skiing with family and friends.
And I’m thankful for this forum. Nowhere else could I have ranted on like this fairly certain most readers would at least put up with it, some understand, some even empathize.
We all have a dark place that gets the odd visit but thanks to the innovative Welsh Surgeon Ivor Lewis we are still here to talk, and think and mostly thoroughly enjoy our rebuilt lives. Your reflux issue is not, in my mind, unusual. I assume that you are prescribed a PPI like omeprazole and that you don’t eat just before bedtime. I also take 20-30 mls of peptac (Gaviscon equivalent) just before bed and sleep with a wedge to keep my head well above my chest. Also I very rarely drink alcohol. This means my reflux incidents are manageable. My biggest problem is incisional hernias of which I have now had 5. My mid line scar is a mess as the surgeons gain access for the corrective surgery.
The questions that are always thrown at me are what have you ate,are you are doing too much, they just don't understand its a side effect of the surgery its just going to happen and like you despite taking good care if my diet and doing so much now to look after myself it will still happen.
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