Supercharged jejunoscopy

I underwent this procedure in 2007 following having my oesophagus removed in November of the previous year - I would add that the oesophagectomy was undertaken due to a medical error in that it was discovered in the histology that there was no cancer and another biopsy had been confused with mine. I just say all this to make it clear that I didn't actually have cancer in this instance. After the operation I was on enteral feeding and the decision was made that I should be referred to St Thomas in London where this procedure would be carried out. It involved my small intestine being pulled up to construct a new oesophagus. It turned out to be very successful but of course I can only eat one course at a meal and not too large. The swallowing is quite good but sometimes in the middle of a meal there is a blockage and it is almost like a swelling and I am unable to eat any more. This can be a bit awkward if out with other people but it doesn't happen often. I should mention that it was like a miracle being able to eat again and have a cup of tea, and to be able to get rid of "the machine"!

It is the bowel situation which can be hard to come to terms with. It can be fine for a few months and then suddenly every day and during the night, usually for about a week it just goes on and on. It really wears me out and I try to think that maybe it was something I had eaten but of course I did find out that there would always be this sort of problem but I just wish it wouldn't last so long. I have no one I can talk to about this because I believe it is a very rare operation and even the local doctors seem unable to discuss it. They immediately think if there is a bowel problem it must be cancer and I know it isn't as I have had this since 2007 and I know the symptoms of cancer.. In between times it is OK so I suppose I should be grateful for that. It would be good if anyone could comment or if anyone has undergone this procedure.

14 Replies

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  • Hi I would ask for an endoscopy, some people need a stretch of the oesphagus, or maybe out in company you may be more conscious of eating and stressed that it blocks. Remember eating and drinking together causes problems. Only sip drinks when eating. A lot of us have bowel problems after, can be how quick or slow the stomach empties. I have one day where I seem to be on the loo 5 to 6 times, every now and then. I am a cancer patient who underwent surgery last MArch.

    Good LUck

    Debbie

  • Thanks for your reply Debbie. The swallowing isn't too much of a problem really but thank you for your advice. It's the diarrhoea which has been getting me down.

    I hope you are making a good recovery.

  • Are you talking about diarrhoea? Are you taking PPI medication (eg Omeprazole)? It is feasible that there may be some kind of bacterial infection that arises every so often. I would feel inclined to contact the specialist nurses at St Thomas' and ask if you could be referred to see Dr Jason Dunn the gastroenterologist, who is a very nice and highly competent man. It might be that a course of antibiotics might be necessary, but I am, of course, making unqualified speculation. Persistent diarrhoea does occur and does make some people's lives a misery, and you do need specialist help to overcome the problem.

  • Thank you for replying AlanM.

    Yes, it is diarrhoea which is really a problem at times. Looking back at my paper work in connection with the different procedures I have had, I can see that it is mentioned that the division of the vagus nerves means I will always be prone to episodic diarrhoea and urgency. I just feel that the episodes are lasting longer, although I try various medications, i.e. Immodium which doesn't always work.

    In view of the above perhaps it is something I have to put up with.

    It is such an unknown procedure sometimes I feel that there is no one I can turn to but I am grateful to you for your prompt reply. Wouldn't I have to contact my own doctor to refer me to Dr Dunn, unless I was going privately?

  • As you had your surgery at St Thomas' and this is one of the consequences of your treatment I would ring the Specialist Upper GI nurses there and ask to be referred.

    Yes, the vagus nerve separation can and does have these effects but there can be other causes of diarrhoea as well, and I think you have gone past the point of simply accepting this as 'part of the deal'.

    There are a whole set of gastrointestinal symptoms that can occur, sometimes in surprising numbers, after cancer treatment generally, and with this type of surgery that affects the digestive system there are often digestive consequences that sometimes need the attention of a specialist experienced at dealing with such patients

  • Thank you very much for your advice. I should do as you say to at least find out whether what is happening is considered normal in the circumstances. It is 7 years since I had both of the procedures and I am 82 now but quite well otherwise and not disabled in any way.

    I am so pleased to have your advice as I had no idea how to go about contacting the right people.

    Thank you again.

  • As you present it you are the victim of ghastly medical negligence. If so I hope you have been appropriately compensated.

    Apropos the fecal incontinence do you know if, during the surgery, anything was done to your gallbladder?

  • They admitted liability and my daughter dealt with the legal side of things for me as I was in no fit state to do so. I did get some compensation - not a huge amount as I am retired and elderly.

    Nothing was ever mentioned regarding my gallbladder - I think it is as the OPA Volunteer has suggested and I should get in touch with St Thomas' the next time I have this problem.

  • As Alan has mentioned. Jason Dunn is the man to see. I was referred to him by my Surgeon - James Gossage after having had a transchiatal oesophagectomy at St Thomas's in 2014. I also suffered with recurrent bowel issues, that could be debilitating. I got fed up with everybody saying 'dumping syndrome'?

    Dumping Syndrome has (in my opinion) become a dumping ground (excuse the pun) for nearly all stomach & bowel aches. I was told my hypoglycemia was 'dumping syndrome'. It is not and I know it is not. It is reactive hypoglycemia that only reacts to sugar, nothing else, just sugar.

    Anyway. Jason Dunn advised me to stop taking pro-biotics. I had previously been advised to take these, (Actimel) once or twice a day. The effect of stopping, was almost immediate. His view was that I was over producing bacteria and that it was likely that this bacteria was being stored over time, with the inevitable release, that was always timed for maximum embarrassment.

    Jason is very well versed in GI surgery and it's side effects. He recognised that my Hypo's, were NOT dumping syndrome and treated me for 'hypo's' That treatment "Acarbose' has proved life changing and made my hypo's manageable. As important, he took time to explain what was going on. Just understanding that has made a huge difference in how I tackle the condition. It has allowed me to return to full time work and enjoy life.

    It is sad that you have this as result of a mistake. I wish you well and hope that you are able to see Jason.

    Please do let us know the outcome.

    Bruce

  • Thank you so much for the information. It is helpful to know that if things get really out of control there is something that can be done to help. Everything is calm at the moment and at this stage I am hopeful that it will stay that way but it seldom does. I have decided that if I have another bad episode which makes me feel so very weak then I will definitely do as Alan has suggested. I am so glad that I found this website - it has been good to hear from others who have had the same problems.

  • Hi, it might be the case that you are not absorbing the Imodium, have you tried the Imodium tounge melts? They work well for me. I also eat a couple of bananas a day, which help slow everything down.

    Cut out sugary foods when symptoms start and you might find that the symptoms clear up much quicker. Sugar has an asmotic effect, which will increase the liquid in your stools.

  • I have tried changing my diet, in that I have cut out chocolate completely for the past year (that was hard!) and now have white bread instead of brown. I do also try to have a banana every day but the dreaded attacks occur when they feel like it. Perhaps not so often but seem to last longer. However, I will see what happens in the next few months and may have to look for advice at St Thomas' eventually. Thank you for your advice.

  • I was referred to Jason Dunn with similar problems and I had breath tests to rule out an overgrowth of bacteria, which I was able to do at home. A sehcat scan to see if there was a gallbladder problem, both being normal. I then had a colonoscopy at my local hospital (for obvious reasons) which discovered a large polyp. A further colonoscopy and the polyp was removed. They also found I had diverticulosis, which is a common occurrence as we get older but doesn't always cause trouble. Being of the same age but 23yrs post op. I am now able to be back to near normal!!

    Good luck with it well worth doing sally

  • Thank you Sallym - it is good to know that you were so well checked out and are now quite well. I will bear all this in mind and at the moment I am monitoring things and thinking more about my diet to see if that helps. If I am worried and uncomfortable I now know from the wonderful replies I have received where to go for help.

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