Post oesophagectomy problems

Hi, we are new to the site, and I apologise for the length of my post in advance.

My husband, and best mate, was diagnosed with T3 N2 oesophageal cancer last May. After complications he eventually had 9 weeks ECX and surgery took place on 3rd Jan this year.

The surgery seemed to go ok, but after a few days he developed a lung infection (both lungs) a rare sepsis, and severe vomiting with an enlarged stomach. He spent a week in ICU and has been on a ward ever since unable to drink, eat and with a large quantity of bile being drained off via an NG tube.

They thought it was the pyloric valve, but a CT and endoscopy shows no problem. They have checked for blockages, but nothing showed, so just said his stomach had "gone to sleep". A barium done Thursday also shows very little action of the stomach muscles, but fluid is draining slowly, shown on an x ray done yesterday.

They have taken his NG out, and he has been on ward release today, but eating and drinking is a HUGE problem he has only managed 1 egg, 6 spoons of soup, and half a bowl of rice krispies all day. He also can't face fluids on top of that as his stomach is too full.

PLEASE can anyone shed some light, hand out advice OR just give us aome hope that things will improve OR what we can constructively do to help ourselves.

Thankyou for reading this. Lynn xxxx

21 Replies

oldestnewest
  • Hi Lynn. I am sorry to hear of these complications. Does your husband have a feeding tube? That should help ensure that he gets fed properly. I can't advise anything except keep trying different foods, find out what works. Keep talking to the doctors or nurses as they are very experienced in this.

    As time passes it will improve. I could hardly eat anything just after my operation. I set two targets. One was fish and chips; that took about four months. The other was steak and chips; that took around 15 months

    Have you spoken to our helpline? We may be able to assist you. It's on 0121 704 9860

    Stay in touch

    Haward

  • Thankyou Haward for your reply. He does have a feeding tube, but has still lost over a stone in 5 weeks. He was only small to begin with and now looks like something out of Belson!

    The consultant has been on about removing his feeding tube this week, so may need to question that. He is still in hospital, and has a temperature this morning, so not sure why. just hoping things will improve soon x

  • This happened to me in 2012, five days after op I developed all kinds of infections under the heading of sepsis, was in induced coma for five days and my wife said things looked extremely grim, but I managed to hang on and walked out of the hospital after a month, but it took me a long Time before I could start eating properly, my j tube was in for about four months, I've been back at work for the last three and a half years, keep positive

  • Thankyou for your positivity, I am glad you recovered. What were your symptoms when eating?

  • I felt extremely sick and didn't think I would ever have an appetite again, but after the feeding tube went it did slowly start to come back, I found cheese to be a very good anti sickness food and ginger biscuits. I now eat everything I ever ate including loads of king prawn madras' roast dinners etc and everything else , little and often, go easy with the sugar

  • I'm sorry not to have more advice other than to hang on in there .

    And to argue very strongly for the feeding tube to satay put .It does reduce the appetite but if weight is low it's vital to get calories for the body to heal aftyer the op .

    Has the hospital a specialist dietician ?

    Have you looked or phoned the OPA ?

    opa.org.uk/pages/our-helpli...

    They have this ...http://www.opa.org.uk/downloads/docs/qehb-dietary-advice-for-dumping-syndrome-after-oesophago-gastric-surgery.pdf

  • It might be worth asking your doctor why there is bile reflux. In terms of eating, if struggling, then use the feeding tube. I used Abbotts Perritive, which is higher in protein and therefore lower GI. I would go through a bottle overnight at a slow rate. I also had a back pack so I could have the feed running whilst I was out and about. Ask for a backpack mobile feeding unit.

    There is a lot of pressure to keep your weight up, and I used a feeding tube on 3 different occasions to keep me going whilst I adjusted to eating again. I'd minimise solids until his stomach gets used to processing liquids.

    In terms of the weight loss, some of that will be due to water loss and also having an empty gut/bowel, so some of that loss will come back very quickly.

    Please feel free to ask us all any questions.

    Regards,

    Jay

  • Thankyou so much for all the replies x

  • Hi Lynn,

    Keep your chin up there, this is probably the most difficult time for both of you, just to give you an idea re eating and weight, I have always been quite small, five foot five and nine and a half stone, and always a really good eater (My wife use to say I must have hollow legs to store all the food I ate).

    I didn't and couldn't eat anything whilst I was still in hospital post op, on the last day I had about four spoonfuls of clear soup, but I was on the feeding tube every night. It was many weeks before I could eat anymore than a few spoonfuls.

    I on the advice on my specialist put on a stone pre-op and I weighed ten and a half stone on the day of the operation.

    That was September 2015, I now weigh just below eight stone having climbed from my worst low of six stone twelve. It has been quite a long hard road, I still find it difficult seeing my body in the mirror I too look like a Belsen survivor, as stupid as it sounds I avoid looking in the bathroom mirror if I haven't got clothes on, but I am still here and I always try hard to be positive as much for the sake of my loved ones as myself.

    No one would deny the difficulties about to face your chap and yourself, but the operation is behind you and things will gradually improve and I would be confident that whilst still on the night feed tube he will have the necessary nutrition going into his body.

    Food will be a long term trial and error thing which everyone who you encounter on this site will no doubt confirm, and your chap getting used to his 'New' body is the most difficult part, but with luck and determination he will get there.

    Most of all, it's still early worrying days for you all but do try your best to keep your chin up we are all survivors of the op on here and do understand what your going through, so good luck and post again if you need advice or just a chat!

    Best wishes

    Richard

  • Your surgeons will have the best perspective of what is going on, and do not hesitate to ask to speak to the consultant so that you are aware of how they are viewing his progress.

    It is a major disruption to his digestive system, and there will inevitably have been quite a lot of separation of bits of the vagus nerve that controls digestion and all sorts of other things, but gradually the body does adapt to the new system.

    Sepsis is an enormous shock to the system as well, so it is not surprising that he does not feel like eating. There is no reason to think that he will not recover OK, but at any given time you will probably feel enormously frustrated by an apparent lack of progress, and naturally very anxious. His body's energy resources are probably being totally used up in recovery from the internal surgery and other changes, so not having any appetite for food is quite understandable.

    Maintaining hydration and nutrition is very important so the feeding tube is a matter of judgement. The body does normally, gradually, accept eating again, but it takes much longer than we imagine to train itself into the new system of rearranged digestive organs.

    There will be lots of people known to users of this forum who have gone through equivalent traumatic events and have come through OK, and we hope your husband will join their ranks before too long. It is a very bleak period to go through and we wish you well.

  • I am so grateful to everyone for your encouraging comments. I guess we all know it is a difficult surgery, but living it is different.

    Dave has had ward release today, and been much more relaxed, and while I know he will have other "bad" or "nor so good" days. Today along with hope from the lovely replies, has been our first "good" day.

    He has eaten quarter bowl rice Krispies, 1 tin of tomato soup in 2 sittings, 6 rich tea biscuits and a small bowl of rice pudding. Yay!! It may not be much but considering on Friday he was still having bile drained and this is his first food in 5 weeks, we are really thrilled!!

  • I was also very ill post surgery, had sepsis, acute kidney failure, i was so ill that my husband was told to prepare for the worst...

    That was 10 years ago this Thursday, I have gone on to have my two children who are 5 and 6. The first 6 months were the worst, I could hardly eat anything and was very ill most of the time as well as i a lot of pain. It does get better though and I am glad that I had the surgery.

  • What a wonderful outcome for you and well done. Thankyou SO much for posting.

    Dave came home last night, and although we have a long journey ahead, we are so much more hopeful than on Saturday.

    He is just making himself some porridge and a cup of tea, so a big improvement!! Thankyou again for ALL the replies we are very grateful xx

  • That is an incredible recovery! I couldn't have done that for at least 2 months post-operative. Still can't drink tea. He must be very strong - and I am so happy for you. Wonderful wonderful wonderful!

  • Thankyou so much xxxx

  • Hi Lynn,

    I think I may have spoken to you on the McMillan forum?

    If so I'm so glad to hear your husband is home. I literally checked on there this morning for an update and then saw this post xx

  • Thankyou Amy, he's home thankfully after 5 weeks in, and doing better today than we thought.

    How is your Dad? xxxx

  • That's great to hear Lynn! I hope this carries on for you.

    He's 2 weeks in to his first cycle of ECX. His first week was bad, he didn't feel great at all, but he has been feeling almost normal for the last few days and eating more, so just praying this continues!

    Keep us posted!

    Amy

  • We will be thinking of you. Is he at New x or Stoke?

  • He is at Stoke xx

  • Treat him as if he was pregnant! Any mad fantasy in the middle of the night---indulge him----as surely that craving will contain at least calories, if not minerals and vitamins, etc. The maxim is "a little of what you fancy". The hormones controlling appetite and satiation have been severely disrupted by the surgery and will never return completely to normal.

    After about 1 to 2 years you will have hit upon a formula for what works and what doesn't.

    Hopefully you will then begin to see meaningful weight gain. It's a long haul but worth it.

    My Op was 25 years ago and I still consider myself to be in a state of flux.

    Do your homework about Dumping and the associated Hypoglycemia.

    Watch out for Vitamin deficiency - due not just because of dietary constituents but also because of poor absorption. This very much applies to things like Iron/Magnesium/Potassium/B Vitamins.

    Re-establishing a relatively normal flora in the gut is critical - think probiotic.

    It's all on this site.

    Good luck.

You may also like...