Fear of future

[RitaandOllytogether]

My son went from 12 stone aged 12 and ended up 7 stone in seven months. The hospital treated him with an eating disorder and consequently put mental health services in place. By the time the hospital finally agreed to carry out Barrium meal he was admitted to hospital for treatment of anarexia and Achalasia. He underwent Sphincter cuts. Balloon dial action and Botox. He is now 23 and 9 stone. He has been told when his Sphincter shuts again he will need a peg or his oesophegas removed and his stomach brought up to his through. My son says when this is due to happen he will take his own life. He is a ground worker and fear of the un-known is worrying us both me for the future and my sons dispair. How will peg or removal of oesophegas affect his future.

[Mauser1905]

Hello parents,

Sorry to k ow of your son's agony. Given his young age and what he is going through. It is quite too much. I feel he must be frustrated to great extent to think of taking his own life. Perhaps he may benefit from reading this forum, understanding experiences of people who have been through the IL Oesophagectomy. That will offer him some comfort. Perhaps joining OPA patient meetings every month at a centre closest to you. Check opa.org.uk website for event details.

Best is face to face with persons who have been through this. In my view.

Being this young with underlying issues means frustration build up for not being taken seriously enough for what it is. I know the pain myself.

There are fascinating examples on this forum of patients living great active life, like somebody is professional bicycle racer, one lady had had two children post this IL Oesophagectomy. Great inspiration.

I am sure you will find good help in this forum.

[RitaandOllytogether in reply to Mauser1905]

I will look. Thanks

[Npride]

Hi there, what a terrible journey you have all faced so far and still have to come. My hubby had Oesophageal Cancer requiring an Oesophagectomy (his was the Ivor Lewis, which is where the oesophagus is pulled up, he had 2/3rds oesoph and 1/3 stomach removed). During this process he was fed through a Jeg tube (Intestine) for 8 weeks as it wouldn't heal. I would rather be honest to you than sugar coat. The tube feeding is easily manageable and they are clever as they have special back packs that you can hide it all in if you have to be out. He had to be fed for something like 16 hrs a day and we did most of his during the night. There are of course problems like everything, He was totally nil by mouth during that time - not even water or medication. You are given training on how to solve problems and if he ever did go down this route, when you flush out the tube with water - do not put it in the fridge (I sterilised the water and then thought I should keep it in there, forgetting I was about to put ice cold water straight into his intestine!! he squeeled a lot! - I then left it at room temp which was better. The biggest issue we had was putting meds through it. In the end they just blocked the tube and it had to be removed. Many people manage with being tube fed really well and we did but it is a little tricky. The surgery however although very difficult may be his better option as he then wouldn't have the food to carry around - although he could try it out first to see how he gets on. In regards to the surgery, this is very radical and causes lots of stress on the body. Many people on here have managed theirs really well, my hubby unfortunately had lots of side effects that he never really got over, although we did manage to understand it all better. The key is food little and often and not loads of sugary items as it causes dumping syndrome. Could your son talk to a councillor? Or a health professional to begin to help him understand. It must be so hard for him having gone through so much from a young age. I really wish you the best for the future, but this is a very difficult decision to make. Try to get all of the facts from the consultant, and work together to find the best option for your son. I wish I could say something super positive, but this is a hard one. Take care.

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Glad that your son is at least making some progress. It might be helpful for you to download a copy of 'A Patient's Guide to Achalasia' from the Oesophageal Patients Association website opa.org.uk/downloads.html

Tension and anxiety can make it worse for some people , so as well as trying to eat food that does not cause problems, he could try and find methods of relaxation, especially around food.

It is rare for people who have achalasia to have to have their oesophagus removed, or to have a feeding peg. But if it does come to this, he really needs to see an experienced specialist.