Oh No !

[Deeedals]

Had my Ivor Lewis on 9th June and seemed to skip through it all, Chemo included ! Went home at 9 days post op and all was brilliant.

Got the best histology report I could be given and was tolerating soft diet …………….. then WHACK! HAVE SOME OF THAT !

On 27th June I woke with griping pains, retching, which progressed to vomiting, and unable to tolerate even water. I was blue lighted back to the ward, dehydrated and feeling worse than I’d felt ever!

After various tests and 4 days in hospital they concluded that I’ve had a stomach bug. I have lost a stone and a half since my op.

I have to return tomorrow for a swallow test but I’m pleased to say I’m feeling almost human again!

[Hidden]

After my op whilst still in hospital I had a couple of episodes of diarrhea I had tests but nothing was found they just thought it was because of the effects the op has on the digestive system. So hopefully you’ve just had a blip and will be fine now. I don’t think anyone can go through what we,ve been through without some issues . Glad you’re feeling better and I hope all goes fine for you tomorrow. Did you not have a swallow test before you came home after your op.

[Deeedals in reply to Hidden]

No, they don’t do it routinely at my hospital and as I had no issues, there was no need

[Mauser1905]

Good morning By far as you write, you seem to be one of the fortunate patient to have had textbook recovery.

Stay like that. Wishing you all the best.

[hunsdon]

Hi sorry to hear what’s happened you and wish you a speedy recovery, it’s a slow process so dig deep into that strength pocket and remember little and often, take care x

[Cavalier3]

Ah what a shame you’ve had a set back after doing so well.. glad you’re feeling much better now. I’ve been incredibly lucky and now 3 months post IL I’ve not had any major problems. Just pasta and tomato skins but I can live without them. Some days I forget it’s all happened I feel so back to normal. Take one day at a time and you will be feeling amazing soon. Xxxx Sue

[Hidden]

Had my op October 2018 and also had a great outcome recovered well in hospital and was allowed home earlier than expected with an appointment to go back for a check after a couple of weeks, first days at home were good then I can only describe the next two weeks as probably the worst of my life, went from diarrhoea to constipation, feeling sick unable to eat and pretty low mentally never really got to the bottomed it, still need to watch what I eat and get some issues but on the whole life is good.Take care and hope all goes well

[Animalmadwoman]

So good to hear your op went well and encouraging post op recovery. My husband had his IL in 2019. I have cared for him and he still gets bad days. The dumping and nausea go with the territory .

Still very early days, but hopefully you have good follow up care and your consultant probably still on board. ( usually 5 years after op) .

Remember to space small meals out and no liquids with food ( half an hour before or half an hour after eating).

Glad to hear you are feeling better after bug😣

Things DO get better, everyone’s experience different .

Remember to rest, you’ve had surgery which is massive . Good luck 🤗

[kiddy]

Glad to hear you are back on rd to recovery. It is a big roller coaster you will be on. Yes you will continue to lose weight for a while. I lost 3 stone and then it settled. Getting on here and asking questions when things are not normal to you will also give you positive feedback.Are you going to have the post op chemo?

Best Wishes

Debbie

[Deeedals in reply to kiddy]

Yes my oncologist rang today, it’s being arranged for 6 weeks time

[kiddy in reply to Deeedals]

That’s good acts as a mop up make sure it is all gone.Best Wishes

Debbie

[liz_crisp]

Hi Glad it went well, as said before it's like a roller coaster for a while now with practically no rhyme or reason. My surgeon said it is to do with the gut relearning how to deal with food again. It also works on gravity for a while now and if food moves through too fast it can be excruciating. I still think when I get too tired my body shuts my digestion system down to save energy. I have learnt to manage my energy over the years, or like you I can't keep a thing down, used to drop into A&E for a fluid drip and then take it very gently for a few days. Losing weight is normal I went from 12 down to 7 1/2 stone I now weigh just under 11 most of the time. But it took ages to gain weight.

Stay safe and have fun. 😄💕

[cherrybailey]

You have my empathy I had part of my eosophagus/ stomach, (lower bowel act as one) Had all the tests, monitor what I eat, drink, took a lot of years get used to living with the retching, wind, diarrhea no control, the pain insides the worse. I have had several bugs over the years bacteria builds up. 13 years now had Stage 4. It is so early days and think it is just a blimp your body adjusting to the change agree with Molly to go through what we do going to be issues (mine going to be different) be strong, positive know you are worried that saying time a healer!! Your body doing the same Good luck!!

[Deeedals in reply to cherrybailey]

And all the best to you too, thank you for your kind thoughts ❤️

[Popsic]

Hi there,I am 8 yrs post op, I was like you, great recovery, then when I got home, hit me like a hammer! Diarrhoea, constipation, feeling / being sick. Pain when eating, even now I still get pain when eating sometimes. I now have slow gastric emptying, having to take 2 antibiotics a day to help, I'm allergic to Domperidone and Metaclopamide. I have to take tablets to make me go tablets to stop me going, also they put me on Creon, they help a lot, I have also started taking acidophilus once a day, try to protect against the antibiotics. The only thing I worry about is having to take omeprazole daily, was hoping that would stop🙄

It's all trial and error, you need to give yourself time and find what's best for you, your doing amazingly, keep up the positivity.

[grandylynda]

To get home after 9 days was good so its a shame you had a set back. Could have been a bug but also could be your body having a big rebellion about its reduced digestive system. I am surprised you didn't have a swallow test before initial discharge. I was nil by mouth for nearly a week and had to have a swallow test before even a sip of water on the ward. I was readmitted a week or so after my op as I kept retching and almost being afraid to eat. Its a huge adjustment. Just take baby steps and record the good things

[Deeedals in reply to grandylynda]

I’ve had a swallow test now and it’s fine, but like you I’m almost afraid to eat and I can mentally turn myself off any sense of enjoyment in eating

[grandylynda in reply to Deeedals]

Its very early days yet for you. 4 years on I still can't say I actually enjoy food very often. Just try to stay positive and remember to look after your mental health too. I needed professional help with that too in the end. They tell you its a hard recovery but nothing really prepares you. 4 years on I do manage to lead a reasonably normal life but with plenty of planning eg always have emergency cereal bar or similar plus medications and anything else you may need x

[Notknowmuch]

Sorry to hear of this bad run! Glad you are now recovering well and in good hands. Praying for a great result from the swallow test that all is in order.

Take care!