How do I help my partner cope with achalasia
Posted , 2 users are following.
Hi. I'm looking for advice on what more I can do to help support my partner. We have never met or spoken to anyone who has achalasia, so at times he feels no one understands what he's going through. I can only be a bystander and have empathy but I don't really know how it feels. Has anyone else had a similar experience?
He was diagnosed with achalasia in 2011 after a few years of struggling to swallow food and fluid. He underwent a Hellers Myotomy and Fundoplication in 2011 and at first it seemed to help but for the last 4 years at least he is really suffering. He still feels that 'food hasn't gone down' and needs loads of water during mealtimes. Sometimes he's OK but at other times he is scared to eat as he hates the feeling of choking and the feeling of that he's going to die because he can't breath. Eating in front of other people makes it worse and I do feel that sometimes some of his symptoms are exacerbated by this stress (we now very rarely go anywhere). He also gets really bad regurgitation, especially at night. It's scary for both of us and I fear that he will aspirate. We've tried all sorts of food , we try to eat our dinner early, he sleeps on loads of pillows so he's not lying flat.
He is so depressed and has been suicidal on several occasions. He sometimes has a bit of a drink as he says that alcohol helps relax his stomach and helps with his swallowing. This may be true but I don't see it as a safe answer. He also suffers with social anxiety and an element of agoraphobia as well as general hopelessness about his condition as he knows there is no cure so getting him to a doctor is a real issue. The embarrassment of potentially choking or regurgitating in public plays a part in his agoraphobia. He does not think there is anything else they can do for him and the investigations 10 years ago were quite traumatic for him, which has made him more reluctant to seek help. I'm sure there is a treatment out there that can help him.
If there is anyone on this forum who knows how he is feeling or who is in the same boat as me I would be grateful for advice. I desperately want to help him and give him hope. Mostly I want to be able to say to him that he's not alone and there are people who really do understand.
Thank you x
0 likes, 2 replies
paulsz julie67367
Posted
I've tried to reply before but I put my contact details in so not sure it was allowed... i found a great website called achalasia-action .org with useful info and support.
've had achalasia since i was 14. I'm now 43 and have learnt quite a few things along the way. I also tried to take my own life when I was 18 so can fully emphasise with your partners position.
It is possible to learn to live with this condition but takes a great deal of trial and error... I would be more than happy help if I can.
1st thing to understand is he will never be able to eat normally again so he will have to adapt a system that works for him. I can normally manage 40 to 60 grams of well chewed food before I have to have a drink. Then as I have the drink I look like a muppet as I stretch and sometimes wiggle and push the food through to my stomach. At this stage I can't talk and it takes a bit of effort to get it through so I can normally only do this 3 or 4 times a meal. By the time I've pushed for the 4th time usually an hour or more has elapsed.
As I take so long to eat a full meal I normally only have 1 a day and use supplements like ensure plus or huel, as many as I can I have a banana, watermelon honey and yoghurt smoothie for breakfast each day which is essential for many reasons.
To stop spasms it's important to keep the oesophagus empty between meals and especially at night so I never have just 1 or 2 sweets offered by the kids or a biscuit offered by a customer.
The dietitian told me to fortify the meals I do have, protein powder on cereal or sprinkled over food, lots of horlicks drinks and milkshakes and of course whatever junk food I want. I feel better when I keep it healthy though.
To combat the acid reflux I drink a tablespoon of apple cider vinegar in water morning and night or zantac also worked for me.
Well reading that back to myself I wish it was that easy... it isn't, and everybody is different. the important thing to remember is keep fighting, and trying things, 1 foot in front of the other and use the support you have. it's a tough journey but it has certainly made me a better person for it.
I wish I could give you my email or phone number to give to him...
paulsz julie67367
Posted
I'm told further surgery is possible... after nearly 25 years since my first hellers myotomy my swallowing is getting worse so the thought of another surgery is crossing my mind and I'm, or rather my GP is, looking for a surgeon. Psychologically after the 1st op the 2nd is scarier to me, taking into consideration the damage / scarring from last time, I'm extra worried, so I am repeating to myself how much better imaging and technology is now, meditating more and remembering last time the surgery saved my life etc... anything and everything to positively reinforce the idea I will be safe and it is the best option for me... and I will need to trust the surgeon when I find them. Hopefully by the time it happens I will be ready... your partner is a lucky boy and he has you by his side. (that's another good daily exercise... remembering all the things I am grateful for / proud of)
Practising different types of meditation helps me too
Alcohol, for me, make reflux and general pains terrible for 2 to 3 days after a few drinks so when I'm climbing the walls and need I've found cannabis useful. I don't think it really helps the pain or spasms a lot but it makes me not care about them so much and I feel like I've had a break.
Also soluable co-codomol helps some types of the pains i get but i don't like the side effects also the doctor doesn't like the amount of sodium in them but the normal tablets don't help at all and I've got to be more careful taking them... Ooo Any tablet must be taken with food to push them into the stomach and not stick in bottom of my oesophagus.
I live in Cumbria and my GP has not had anyone through their doors with experience of achalasia but some were more willing to look into it than others so keep trying different 1s. Knowing what you want them to do helps. Prescribe zantac or ensure plus, vitamin supplements or asking stupid questions to, psychologist / conic pain clinic referrals etc.
Another help to me is work, I'm a self employed plasterer / handyman and the physical work and being able to push my body with exercise so it hurts elsewhere is usually quite meditative to me.
Unfortunately there's no quick fix for the psychological damage so it's just a case of slowly working through your issues, 1 by 1 and working out a way of addressing them... Get help if possible. I can recommend Cognative Behavoural Therapy or whatever they call it nowadays...As learning to live with this is so complicated it really doesn't happen overnight but by doing something however small, you are taking back some control and the more you do it, the better you get at it and the easier it will be,.. slowly build up different skills and techniques and try not to stress as they don't all work all the time so sometimes switching things up / trying a different approach can help