Oesophageal Patients Association
3,372 members2,107 posts

3 years Post op Ivor Lewis. T3N0M0 some questions for you

I was wondering if many of you in similar situation would mind answering some questions

- do any of you wear a Fitbit or similar device ? I’ve been tracking pulse, sleep, steps, weight, blood pressure, etc for three years

- do any of you maintain a good diary? I don’t but would be interested to see what info you capture ? Does anyone record dumping or other ‘symptoms’ or side effects? I’m still struggling with some loose stools, diarrhoea from time to time, some hypo type effects (dizziness, disorientation, confusion)

- do any of you record other info eg location and severity of pain? Bile/reflux ?

Am wondering if there are any correlations between above ?

18 Replies
oldestnewest

Sorry to hear that you still experience those symptoms. By next April 29th, i’ll be 3 yrs post op. I have never recorded anything as i never had any pain since the op, only some reflux if i eat late n too much at night. I guess i’m the lucky one that i never had dumping symptoms.. or i should give credit to my surgeon.

Hope in the new year, your those symptoms all disappear... best luck.

2 likes
Reply

Very lucky

Reply

Extremely lucky

Reply

Pete

I track my blood Glucose Levels due to my "Reactive Hypoglycemia". This is a direct result of my surgery. In all honesty! There are no surprises here in the data. Anything that contains sugar will see my blood glucose rise rapidly within 1.5 hours, and delivering the exact symptoms you describe. No sugar intake and I have no issue. The concentration of suagar is the issue rather than the volume (if this makes sense?)

If I eat a small amount of chocolate I will see a spike at the 1.5 hour mark. A large slice of cake will give the same result and symptoms. If it is cake with icing? Then the resultant crash will see me collapse, unless I take Glucose as my levels drop. The same would be true if I ate a whole bar of chocolate.

I avoid sugars, where I can, but still cheat and still regret it, every single time.

Cream will cause me loose stools (life is just not fair). So a small mince pie on it's own = okay. Add some cream and I will get the upset stomach = dumping, within 15/30 minutes. It has been suggested that this is "lactose Intolerance"? as I can actually tie it down to cream.

As an engineer by trade. I am still guided by the rule:

"everything changes, as a result of a change, made by somebody or something"

So we are going along just fine..... Then BOOM we have a pain, or the runs, or both. If we look back or maintain a food diary that includes ALL intake (medicines and timings etc) we will find the answer there. We often forget that medication coupled with food/drink can be a potent cocktail to our fragile plumbing.

I think I manage okay now, and outwardly people are not aware of any issues that I have. But.....I am very conscious that I have to manage me and that is irritating and boring. Most days I just want to forget about all this and eat what is there in front of me and enjoy it.

Good Luck.

Bruce

8 likes
Reply

In the early days after my surgery I tended to give each day a score out of 10 for how well I has feeling. It tended to put things into context and reminded me that that week had overall been better than the week before, even though some days were setbacks.

I think that recording things can help some people when the issues are actually quite complicated, especially where certain foods can cause problems. When you are struggling to find rhyme or reason for the setbacks, there can be clues in a food diary about what you ate, or did, the day before. But feeling well is something to celebrate regardless of what the score tells you.

Looking behind you after going to the toilet can be helpful to note if your stools start to change, especially if there is an issue with digesting fat (pale, floating, oily stools can indicate problems with digesting fat - steattorrhoea).

I think Bruce's system of measuring glucose levels is probably the most important point in this area.

Other than that it probably all depends on whether measuring things helps you to keep up good habits like exercise.

Whether or not this turns into anyone's New Year Resolution, I send everyone all best wishes for a Happy New Year and Good Health for 2018!

5 likes
Reply

I keep an eye on my blood sugar as it is like a roller coaster depending on what I’m doing. It’s carbs that cause me problems and bananas I can eat a bar of chocolate and it’s fine but a cheese sandwich and my blood sugar can plummet xx

3 likes
Reply

Interesting reading . I often wonder if I should monitor my intake /record my physical state more closely .

I'm 5 years on and am realising that I've spent the best part of those years recovering and getting past my op . Which for me has involved underplaying things . It's an approach which has served me well enough but it's beginning to dawn on me that it does have some drawbacks .

I've become used to lost afternoons when I've eaten unwisely and my world has shrunk to bed and toilet . But the odd bout of reactive hypoglycemia really has made me more attentive . Especially to the fact that it's not just a question of what goes in the stomach but

the combination ( any late afternoon snack if taken with hot tea will have dire results )

the timing ( fatal to eat quickly on an empty stomach )

the setting ( no ,not a good idea to grab a snack and keep moving furniture )

ones physical and psychological state ( tired and stressed = more prone to physical effects ,was I really so stupid as to not factor this in ??? )

I love to read bruce's posts not only because they are unfailingly helpful but because they also lighten my guilt at not employing more self control over my diet by reminding me that I am not the only one who slips with inevitable results .

But having said all that I have to confess that I am very unwilling to record intake etc ,I adopt a sort of "half an eye " watchfulness instead .

How different ( and how similar ) we all are .

3 likes
Reply

My history with this treatment is very similar to yours--same staging and Ivor Lewis in August 2015. I experience dumping only when I eat something by itself with a lot of sugar and little protein or fat--thus e.g. chocolates are out but most pastries and other desserts are fine after a meal. I do not eat for three hours before bedtime and I chew gum religiously after eating (and much of the day as well). Omeprazole 20mg once at waking and once before bedtime, Gaviscon tablets at any sign of GI discomfort. Regardless of how much I am served at a meal, I quit eating at the first sign of feeling full or before. I take very little liquid with meals and don't drink alcohol at all (the latter for other reasons). I exercise, mostly stretching and strength training, twice a week and play golf 2 or 3 times a week. I swim laps for a couple hundred yards when the opportunity presents itself. I am 71 years old and the Ivor Lewis got me down to a proper BMI which I have maintained since.

With all this regimen, if you want to call it that, I feel great and experience few problems with reflux as long as I sleep slightly head-elevated. I do not maintain a diary or wear a Fitbit but have come to these habits and maintain them through trial and error. That said, I would have near constant reflux without them, which of course is what caused the cancer in the first instance. Best of luck, Worth

3 likes
Reply

Hi Worth - tell me more about the chewing gum .Is that recommended ?

And the stretching ,could you say more about that ? I need to start exercising but I'm nervous that I'll somehow cause some damage ,I have a bit of pain ( made worse by physical activity ) which I'm guessing is caused by adhesions .

Reply

I've gotten little response to the chewing gum suggestion on the website or on the conference calls with patients and medical types associated with Sloan Kettering where I had my surgery. Nevertheless my dentist approves and my oncologist is non-committal, so there is no possibility of harm as long as the gum is sugarless. My surgeon, who did a wonderful job, was somewhat defensive about the return of my reflux with a vengeance about a month after surgery and could only suggest, aside from the usual antacids, drugs that move the food faster through the GI system, which had no effect at all. I was feeling somewhat desperate, since I felt like taking Gaviscon something like every hour (which is of course contraindicted). I was a competitive golfer pre-cancer and we are always tinkering--in the middle of a bad round, I suddenly remembered that I had had a stellar round years before while chewing gum, so I tried it again. The reflux to my surprise immediately lessened noticeably then and since. As I said before, I have found it especially useful right after eating to relieve that feeling of fullness and incipient reflux.

Why it works I really don't know other than it keeps liquid containing digestive enzymes flowing downward to combat the missing flap that used to (imperfectly) keep acid out of the esophagus.

About the stretching, I do it with a personal trainer who varies the routine every time, so I am unable to relay verbally what she has me doing effectively.

2 likes
Reply

The entries on this page have been so helpful to me regarding post Ivor Lewis.. I experience most of the symptoms described here and I too am aware that when it goes wrong it is because I have eaten something I should avoid. Chocolate and cheese are the worst offenders but I still do it from time to time and usually pay the price. Getting too hungry led me to eat a toasted sandwich quickly (can you believe it had cheese and ham in it) which put me on my back for nearly 24 hours. I have always loved food and I think about it most of the time. The dumping has lessened to about once a month but that may be because I have adjusted my eating pattern to a certain extent. I drink Brandy, quite a lot of it, probably once a month it doesn't seem to cause me a problem, although everything you read says avoid alcohol but I could become social outcast if didn't join in on the odd occasion.

Regarding fear of exercise, St. Mary's Paddington put me on the Bepatient Scheme which aims to get you as fit as possible before the op so that recovery is quicker, I was out of hospital on the eighth day. I was lent an ipad so that I could be monitored each day. My fitness before starting the scheme was 4 out of ten and I considered myself pretty fit at that time. It raised to 7 before the op through the exercise, went down to 4 after op and is back up to six and a half now. They say all is healed enough after six months and are still encouraging me to keep up the exercises, fifteen reps at least.... sit to stand, step ups, rowing with a band, arm lifts with a band, everything you can do indoors apart from the half an hour fast walking (luckily for me I have a dog, I would recommend it to anyone who needs to keep moving). I am hoping level of fitness might prevent it coming back but I do worry about the reflux leading to that as it wakes me at night.

I would love to know if anyone has bought a special bed which keeps you raised at night, I use lots of pillows (one under my knees which helps stop slipping) which mostly work but I cannot decide whether a bed would work. The truth is I don't want something that looks like an invalid's bed in my bedroom but if it really made a difference it would be worth it.

And, I'm going to try the chewing gum, although I cannot stand mint since the chemo peripheral neuropathy.

1 like
Reply

Hi I wondered if you have tried the bed wedge? I am almost 5 years post IL op and last 2 years I was really struggling with coughing in the middle of the night, despite the 2 daily doses of Lanzoprazole and always waking for another swig of GAviscon, so got a special code from OPA for a discount on the wedge and it has helped me so much!! I no longer cough at night, have even managed to almost completely wean myself from the Lanzoprazole (with consultant's agreement) so take no medications at all now bar the odd Rennie, yippee. I still need two pillows on the wedge and I also need a pillow under knees for sliding but can't recommend it enough. Definitely worth a try before investing in an expensive bed.

Reply

I still have issues with my blood sugars being messed up - I was a type 1 diabetic since childhood but the total esophagectomy in early 2007 really made things worse so I use a self financed continuous glugose monitor. I know at this stage what foods I should not eat for me to avoid dizziness from dumping but sometimes it is hard to avoid some of the foods you love that cause issues. I try to avoid eating to full. I use less pillows now than I used to but it took time, I am back to being lactose intolerant again for the most part (I can have some full fat milk), the effect of being pregnant with my now 6 year old daughter has mainly worn off (I was lactose intolerant with my 7 year old son). I also have pernicious anemia and regular anemia. I am still here and I am enjoying being mum :)

Reply

Wow Aofie that's some health issues you have to contend with there ! Not to mention the young children aspect !

Redand over - that's a very helpful little list of exercises ,that's what I need some specific suggestions .

Chewing gum comes in all flavours these days ,you might find one that suits .Cinammon would be my choice .

The bed ...yes ,who wants a hospital type bed at home reminding us of our situation .It would need a special flexible mattress wouldn't it ? Foam ? That might put me off .Though it would be lovely to be more comfy .I find if my head or back or something is comfy ,I have to move because my bottom is sore or I'm not upright enough .I can never get everything comfy!

Reply

Hi Aussiepete

Yes indeed my hubby Tony does have a Fitbit and it will let him know that he’s about to have an episode of ‘dumping ‘ as his heart rate shoots up to around 150 fro a normal 50-55. However he doesn’t really need the

watch to tell him that !

He’s realised fairly quickly that he cannot eat and drink at the same time and coffee is definitely a no no ! Guaranteed to make him hypo!Funnily he seems fine with chocolate providing he doesn’t go silly and cheese doesn’t cause an issue. It is so unfair to have to live your life by constant analysis after everything you’ve been through already but I suppose the more ‘clued up you can try to become about your own body then the better you become at improving your wellbeing both physically and emotionally. Realised in a short time through researching this Cancer on my husbands behalf that basically every patient suffers the same symptoms but it’s being able to manage those symptoms that is the key to a positive future.

2 likes
Reply

I met with a physio who explained to me the benefit of gentle stretching excercises to stretch and loosen scar tissue which I should have been doing after I finished treatment. We are putting together a leaflet of excercises for patients who have had an Ivor Lewis to help with scar tissue and the rebuilding of muscle, without using up all your energy after surgery and chemo has finally finished.

Reply

Hi Liz

Will you let us know when the leaflet is available. My wife is 4 years post op in May, and is keen to start exercising but finding it difficult to get advice. She is concerned she does not harm herself. It is complicated by the fact that due to complications she had to have emergency op for a herniated bowel, which resulted in a 10 inch abdominal incision. This then led to an incisional hernia and a further operation to repair. But on the whole she is doing well.

Happy New Year!

Steve

Reply

Krissres ... you really are the lucky one !

Reply

You may also like...