4 years and still struggling with eating

My husband had an oesphagectomy in July 2012 over 4 years ago. He still struggles with frequent dumping episodes and has difficulty putting on weight again. He tries to eat small portions and frequently. The 6 month check ups from oncologist have stopped and it seems as if he has been forgotten about.He has just had a pip assessment and been awarded 0 points. I am in the process of writing a letter ford reconsideration. Any advice please

[margie1]

Hi I had the myear oesophagectomy in August 2012 and I suffer from dumping syndrome I also suffer with pain in my left leg which increases when I walk and have pain in my right arm which my doctors say is nerve damage caused by the surgery i am still seeing my oncologist so I stated that I wasn't happy to be discharged just yet

I also do not understand why your husband was awarded of points in his pip assessment, I've not yet had my assessment of I'm not familiar with the questions he would have been asked but can you appeal? I know of others who have appealed and won I wish you both well and hope you can see someone who can help Contact Disability Solutions they may be able to help

Good luck

Margie

[Hidden in reply to margie1]

Thank you for your reply. I have just sent off a letter to pip asking for ...what's called a reconsideration based on the fact that he was awarded 0 points... Fingers crossed. The assessor did not know what an oesphagectomy was and Alan tried to explain his condition. Will keep you posted

[margie1 in reply to Hidden]

Thank you siobhan21 fingers crossed for you both

Can't believe that people with no knowledge are allowed to do the assessment x

[Hidden in reply to margie1]

Just wondering if you have any suggestions for recipes and snack ideas.

Are you on any medication to ease the dumping episodes.

Alan only on thyroxine and is really on his own now re support from medics.

Thanks

[rayw55]

I had my op in 2009 and still get dumping syndrome sometimes, I still eat small meals every few hours even during the night and consume huge amounts of chocolate etc as I find this is easy to eat and contains loads of calories and that therefore keeps my weight stable. I would definitely appeal the PIP as most of these guys have no awareness of the challenges some people still face. I would suggest he eats whatever he likes, whenever he wants to , if he is like me it is the only way to maintain a reasonable weight. Good luck

[Hidden in reply to rayw55]

Thanks for the reply.

Just wondering what kind of foods you eat...apart from chocolate as I am always on the look out for new recipes and interesting snacks.

Do you take any medication to help with dumping episodes. Alan is only on thyroxine.

Have just sent a letter to pip to reconsider their decision

In Northern Ireland and I think they are just looking to save money. Alan will never be able to work full time again due to fatigue and dumping,but when he is good he is very good,just depends and no pattern emerging.

Thanks

[rayw55 in reply to Hidden]

The majority of my foods are quite 'soft' such as porridge, trifles, rice puddings etc , I have found real difficulty with most meats etc but have found in particular that if meat is boiled first for quite a while and then 'flash roasted' not only do you get the real taste of the meat but it is also so tender that I can eat it . I am not on any medicine at all now, I have a real aversion to taking tablets so whilst I have thyroxine on prescription along with lansoprozol and cisapride I rarely take them. I was fortunate enough to be made redundant (at my suggestion) so got the chance to retire early with my small pensions and as I too sometimes stuff from fatigue. mainly through not sleeping well at night as I still eat through the night every couple of hours and if I slip down the bed get acid in my throat which stays around for hours and is so uncomfortable. i found some meals available from the likes of Wiltshire farm foods were good but Jen often makes quite a few meals at one go and then freezes them in small portions for me . I have to admit that I am not good at feeding myself really as I have not been hungry in almost 7 years and easily 'forget to eat' I find routine is best for me, and once I find food I enjoy and have no issues with I tend to stick to it. I hope this helps in some way and if you or he ever want to chat let me know. I hope it gets easier for him soon. I had mine done with the Ivor Lewis method. Best regards. Ray

[rayw55]

The one thing I miss is eating out which I now rarely do

[gutlesswonder in reply to rayw55]

My IL was 25 years ago.

Initially I was too scared to go out to eat (including family/friends houses). I conquered this by going to restaurants alone, choosing feasible dishes carefully ( eg Moussaka)- then chew, chew, chew. I soon recovered my MoJo! Now any type of event is no longer an ordeal provided I remember not to get excited/distracted and end up swallowing prematurely; when I will usually develop a choking fit.

Refined carbohydrates such as rice pudding or mashed potato are a no-no because I immediately get dumping and go hypo due to the sugar rush.

Certainly the lack of hunger is a problem and it doesn't get any better with the passing years.

[Spikey]

Don't worry about the weight loss. I went from 12st to 10st and have never put the weight back on again, but am fit and healthy. Has your husband seen a dietitian? You don't say what his diet consists of. You could try going dairy free and taking probiotics for a while - it worked for me and is increasingly recommended by gastroenterologists after gastric surgery. Also avoid too much fat, sugar and red meat, all of which will exacerbate the dumping.

[Hidden in reply to Spikey]

Thanks for the reply.

As I cook for him,I make sure his diet is healthy but the dumping still continues at random so no pattern He could eat the same foods one day and no problem but the next time ...nightmare.

He has never been to a dietician nor will he go. What is it with some men that they won't seek help or take it when offered.

He has lost over 5 stone and really has not put on any since the op.

I try to get him to eat 5/6 snacks per day but not easy. I was just looking for suggestions in the food area as it is a real nightmare to come up with new ideas .

Take care

[Creoncol]

I had my op 17 months ago and had one follow up post op with the surgeon,.but nothing since. I am attending a GUTSY forum tomorrow so l hope I will get more feedback on my post-op condition.