Esophageal Stage 3 Cancer

Hi Dave

Welcome to the site.  I am sorry about the problems you are having but you have come to a great place for support.  If you join the OC (gullet) forum you will find people there who have had the Ivor Lewis operation with whom you can exchange ideas.  Either start a new thread or join one of the ones already started.  Many of the principal users of the OC forum are in the UK and you may not get a response for a few hours.

My husband has stage IV OC and was not considered operable and I therefore cannot make any suggestions beyond the fact that I do know that eating after this major surgery can be problematic for some time.

Wishing you all the best.

Hi Dave,

I have had my oesophagus stretched every 3 months for the last 12yrs. it just seems to tighten up and slowly start to close until I have to go in and have it stretched. Its a pain in the arse but you get used to it after a while.Good Luck with your treatment.

Take care and be safe Sarsfield.

Hi Dave up there in Michigan.  We have friends in Canton although I’ve not yet been there for a visit.  (I’m in the UK).

Anyway, you sound as though you’ve had a really difficult time, and complications on top of the Ivor Lewis is certainly very serious, so you’ve done great to get through that.  Did you have infections or leaks around the surgical joins or something else?  From what I can gather, the Mayo hospitals and clinics are world class so I’m sure you’ve had some of the best care possible.  Is your doctor aware that you’re weaning yourself off the medication, because as with any meds, your doctor should be aware of any reduction in dosage, especially because of potential withdrawal symptoms?  As for the stomach pains, you are still very early into recovery yet at four months, as recovering from this surgery can take up to 18 months for some people.  From my own personal experience, I had severe stomach spasms for a few months, but not bad enough to warrant continual pain relief.  There can be various causes, spasms being one, or narrowing at the surgical site causing strictures.   Do you often feel sick with a lot of sweating, because dumping syndrome can cause this kind of pain, but it tends not to be continuous, but usually occurs after eating?  See this link from the Mayo clinic, re dumping syndrome:

 www.mayoclinic.com/.../DSECTION=causes

Whatever the cause, because of its obvious severity you need to see your doctors again and also have them look at your pain management to see if that can be improved upon.  Hopefully, you’ll gradually overcome this and start to feel better as your newly arranged insides begin to mend.

By the way, if you want to see people’s profiles then just click on their photos when you’re signed into the site.

I wish you lots of good luck in your recovery and hope that, like many of us that have had this surgery, you’ll continue to improve over time and find your new normal as everyone calls it in the oesophageal group.  Keep in touch and let us know how you’re doing.

All the best

Crystal  

Thank you for your responses.

Crystal,

No, I don't believe it's a  dumping thing. I don't have any of the symptoms of that, and we've called the Mayo Clinic  a number of times and talked to my surgeon. He definitely thinks the Dilaudid needs to go, but still can't guarantee that that's the cause of the pain. I've never been addicted to anything in my life and I don't like it.

It does seem that when I eat, the vise like situation occurs. My whole abdomen (surgical area) feels like I've got a 500 lb weight on me. It continues to worsen as the day goes on. It's hard to eat enough knowing that this will be the result. I did J  tube feeding for the first 6-7 weeks. Nothing orally.

Thanks again-

Dave

Hi Dave

It’s often difficult to find what causes certain symptoms and side effects of this particular surgery, especially as everyone has various complaints with differing levels of severity, and very often the recovery process after an Ivor Lewis is very hard.  There can be days where everything goes well and then there are those setbacks that leave us reeling again and just wishing it would all stop.  

It’s possible it could be diet related and I’m sure you’ve been told to eat very small meals very often, around 6 tiny meals a day?  It’s also possible that you’ve developed an intolerance to some food, dairy can often be a problem, so it would be worth experimenting with your diet for a while.  Anyway, as I’ve said, some of us have experienced these stomach spasms, which sometimes can feel crushing and take your breath away.  However, as far as I’m aware, they tend not to be continuous like yours and do ease after a few hours, so I can well understand your frustration and your reluctance to eat because of it.  If the pain is continuous and not intermittent then you must see your doctor again.  I always say that if something just doesn’t feel right to you, then keep pestering the doctors.  I can certainly understand the absolute pain and discomfort you must be in and I hope that your doctor will be able to establish the cause and help relieve the situation, but one thing is clear, you shouldn’t be in constant pain like that without respite, so do make it clear to your surgeon that it needs further investigation.

Take care.

Crystal