Lactose Intolerance

Hi Beds

Glad to hear that your recovery it continuing steadily. It took about 2 years for me to reach a plateau where a new normality had established itself.

i have always liked chocolate. Since my Ivor Lewis in 2014 I have become almost addicted to milk chocolate (don’t enjoy dark chocolate any more).

 However, I used to have at least one yoghurt a day, before the op. Now although I still like yoghurt, It makes me feel most peculiar. Not dumping, more like waterlogged.

I suffered with steatorrhea during the first year or so. The dieticians suggested yoghurt to try to normalise my gut bacteria, which didn’t work for me!  Things really started to settle when I started taking a probiotic supplement of acidophilus. I have heard that other people have found it benefits them too. We are all different and what affects one person is ineffective for others. So for most of us it’s finding what works for us as individuals.

May you continue to progress and find your new normality and enjoy your renewed gift of life.

I had a total gastrectomy but suffered with the same issue. Milk in tea etc was fine, but cereal etc was a no go. 

I'm two years post op now and I tolerate it more now. I think the lactose issues calm down after a while. I can eat cereal, drink hot chocolate, eat ice cream etc all no problem now  

I am 3 years post op complete removal of oesophagus. I was really poorly for the first few months after surgery. Pain and the runs all the time. I did a bit of trial and error and came to the conclusion I was lactos intolerant. I still avoid it. I use Arla milk it is just like normal milk. I can have it in my tea and on my cereal. Good luck in your recovery xx

Hi just read your post and I am feeling delighted to know I'm not the only person who has become addicted to milk chocolate even though I'm lactos intolerant I can't stop eating it. I went to see my dietitian and she told me I needed to lose weight. (my surgeon was not happy with her) I said well I can't eat very much without getting either dumping syndrome or very bad acid reflux. So I guess it's the chocolate that causing the weight to stay on. I had a full oesophajectomy in jan 2016. I'm still no where near the person I was. I get tired very easily. I got lots of blood clots on my lungs after first lot of chemo. They said I was having panic attacks and carried on giving me chemo. I nearly died. Both of my lungs were full of blood clots. I now have copd. I don't know if it is this or the fact that they had to break my ribs to get the beastie out But I am always achy in my ribs and upper back. I also get a pain behind my right breast. They say it's nerve damage. Anyway I hope you don't mind me jumping on your post. I haven't been on here for a very long time. I just wondered how people that were a few years post op were getting on. I feel very isolated as no one else I know has had this op or illness. Glad to see you are getting there. Yoghurt is a no no for me. 

Hi Cookiesmum.

Had my pre op chemo and Ivor Lewis Xmas 2013, 2 years before well enough to attempt work. Like you, I get tired quickly, although I manage to hold a full time job down. In bed most nights by 9am and have to rest 1 day at the week end. Can sleep for Scotland and very seem to have enough energy. Tried asking go for B12 injections but not had any as yet 

Like you I have frequent back, rib and front of chest pain but can deal with this as have fentanyl patch Si change every 3 days. Was told it is nerve damage. Can get relief with a combination of paracetamol and ibruprofin on top of pain patch when really sore.

I am now trying to balance my gut bacteria, being pre and probiotic to get rid of bad bacteria which has resulted in many years using lansoprazol causing candidas infections and have reduced this ant acid as well.

Glad someone else had same nerve damage as was getting concerned that C had returned.

I have occasional dumping and sugar crashes and frequent bouts of the skits.

All in all I have a decent quality of life, make sure I have at least 3 city holidays abroad per year. This Oct, going on  Nile cruise to visit temples etc then a week on the red sea and when I get home I am getting hitched to my wonderful partner.

I fight on and do not take anything for granted now.

Keep on keeping on ok.

Ekingfife, you've been on here for ages mate. There's no way they should be humming and hawing aboit b12 injections. It's a well k Ken problem for people who have their oesophagus and / or stomach messed about with.

If you're feeling tired that shoukd be one of the first things they test. You need to demand a b12 blood test at the very least and take it from there. I did have a total gastrectomy which is obviously a but different with after effects and stuff, but it was routine for me to get them. I'm not even sure if they amteated my levels before I had the first one. And now I can feel myself utterly drained and walking up the stairs seems an strenuous task akin to climbing Ben nevis. I get the jag and a few daysater feel normal again.

Ry can't believe you've not had this. 

I'm on a fentanyl patch now too Mao ly for post op pain. I have oxycodone liquid which does the job like no pain relief I've ever had, but is too addictive so I've had to ask the chemist to keep the prescriptions there and I just get a couple of bottles at a time. If I didn't do that I would definitely take much more of it than I need to. Its so bloody addictive. 

I am still achy on my right side where they went in for my rib,  I feel like somebody is poking me in the ribs all the time ! 

Thanks for replying to my post. I don't very often come across any one that has had op a few years ago. I find it so isolating not being able to talk to any one that fully understands what all this entails. I have just woken up, I watched the match (we got beat) I'm a big Liverpool fan. Going to the match and out to the pub was a big part of my life. I don't go any more. Though I went on a tour of Anfield a few months ago. I got very emotional standing pitch side. I never thought I would see inside the stadium again. I know I am not strong enough to go to a match at this present time. But I never say never. I spoil myself and pay for sky and virgin sports so I can watch in the comfort of my home. I too thought I had another cancer with the pain I get in rib cage and top of stomach/breast bone area. I went for a PET scan and it came back clear thank god. I struggle so much with dumping syndrome I get early and late. and know it is due to my eating habit. I have a real problem with digestion and eating. I can smell food a mile off and it makes me feel sick, unless it is curry. But I can't eat curry as it gives me terrible acid reflux. So as you can see I'm still struggling. The thing that keeps me going is, I always say, ' I'm better today than I was yesterday and I will better tomorrow than today. That has kept me strong. I lost my darling sister to brain cancer at Christmas 2016, I was 11months post op then. It's been such an awful time. But if I moaned about anything she would say, 'just do it just get on with it.' So that's what I do. I don't have a husband, I have two adult sons and a teenage granddaughter and grandson. I think they think I like saying, I don't feel well, they just look at me as if to say, she's moaning again. So I don't say much. But I do feel very unwell at times. I never thought that it would take this long to start recovering from. My friends keep asking me when am I going to start going out to the pub and have a drink again ( I wasn't a big drinker) I say never to that one. I think alcohol would kill me. Or get me very drunk very fast haha. My doctor told me I couldn't take ibruprofen as it could cause a bleed. I am on Lansoprazole and petic. to help with the acid.

Anyway I will shut up now. so sorry to rabbit on. Congratulation on you up and coming wedding and your fab trips away. You give me hope that one day I will be stronger to do the nice things in life.

Thanks so much for listening. 

Hi Polly I'm sorry to hear you are still struggling and can feel very under par. Everyday has it's challenges even a few years post op. I'm just over one year and count myself lucky that I am able to lead a fairly normal life. My family and friends are very supportive too so it is hard when you havent got that backup. There are plenty of people on here who understand where you are coming from. Are there any OPA groups in your area that you could get to?

As for not drinking again - so be it. It doesn't matter. I used to be a big red wine drinker - I often think I am now reaping what I sowed but I gave up alcohol a good few years ago as it caused terrible migraines and having a clear head was prefereable. I won't go back to drinking ever now and I do not miss it. I just duck any event where there is alot of booze. I have found a few people in my circle of friends have reduced their intake anyway. Don't you worry about not needing to go out for a drink - if the company is good - water will suffice or a nice cuppa. I hope you continue to improve and feel free to come on here to offload.

I am an oesophageal cancer survivor of 7 years and have become lactose intolerant since treatment. It gives me stomach cramps, diarrhea and mucus. When I use alternatives to cow's milk I am much better.