@racheldmark welcome to our humble group, happy you are advocating on behalf of your uncle. Have they considered giving him tube feedings or TPN to help his nutrional status and help with energy? Does he have any additional diagnoses? I am trying to understand why hospice and not a more conservative approach to nutrition and pain? Small meal, liquid based that are nutrient dense such as ensure is needed if he can tolerate that. MALS should not get to this point, I wonder if there is more going on...if he has stenosis again???

Hi @racheldmark

Thank you for the kind words and a big welcome to the Mayo website. Your uncle's story is so sad, my heart goes out to him. He has been through a lot and it seems he has a great support system, namely you. I agree with @kariulrich in that hospice care seems a little drastic, although a hospice does provide palliative care for the seriously ill as well as the dying most think of a hospice as the final step; this may have a negative affect on your uncle and his mental well-being. It must be a strain on your uncle Lou just knowing he has been put in hospice care something he doesn't need as dealing with MALs is stressful enough. Please don't get me wrong I think those that work in the hospice provide a wonderful and much needed service, I agree he should have palliative care, the question is whether it should be with a PCP and nursing team or with a hospice? Maybe he does need an aggressive approach, but to start with lets find something he can tolerate. I'm not sure if you read my post on food for MALs sufferers on the 4th November; the way I solved my problem was to understand food.

The general rule is anything white is alright stay away from Red, Green, Brown. It has been ingrained on society that healthy food is good for you especially when sick. Well it's the total opposite for MALs sufferers, healthy food will generally cause a great deal of pain. What a MALs sufferer needs is something that is very easy to digest. Your uncle does not want to eat food which causes the digestive system to work hard as more blood is needed in the digestive system; this is where I believe the pain comes from. It could be the arteries causing the pain or the years of lowered blood supply to the digestive system which in turn has damaged the organs on a level we have not detected yet. I suffered months of trial and error to work out what works for me.

For meals I can tolerate eating once every few days white food only
Potatoes mashed with butter, minced chicken, flaked fish, pasta, white soft grain rice, lactose free milk and eggs. I also find some kids items easy to digest, chicken fingers, chicken bite, fish bites; processed reformed food I find very easy to digest. The minced chicken can be lightly seasoned. Start by feeding him the same meal for the first few weeks, something like mashed potato with kids breaded chicken sticks. That's what I ate over and over for weeks. If he gets no pain then introduce another item. He may find he will introduce something, but the pain doesn't start until the next day. Don't be disheartened take off the last added item and feed him what hasn't caused pain for a week before introducing another item. It is trial and error, just don't rush it. I'm down to eating a meal every other day but it tend to stick to chicken fingers and potato. It's repetitive, but I stopped the weight loss even managing to put a few pounds on.

He can not eat any green vegetables with his meal and definitely no salad. No brown bread, bran flakes or anything fibrous, certainly no beef, lamb or any other red meat and No fruit. If these are on his list then stop them; it took a few weeks for me to feel a difference and get them out of my system. Brown foods are usually fibrous and as you know we eat fiber as roughage as it is hard to digest. Green fruit and veg contain chlorophyll which we can't digest; both food groups make our digestive system work hard.

I no longer eat out in restaurants and was never one for fast food takeaway. Read the label of everything he eats and make sure non of the no foods are in it. Basically you need to treat your uncle like someone who has a nut allergy; hopefully that will make a difference. Start him very slowly maybe 1 breakfast bowl size meal every 4 days, along with drinks that increase daily calories like Fortisip juice or Fresubin shakes. Because I don't eat fruit or veg and lack the necessary vitamins and mineral intake I was prescribed high dose multivitamin & mineral complex, he will need this too.

I am not sure what pain relief they have prescribed your uncle, but if it is oral he may want to switch. I was on MST slow release morphine tablets which worked to a certain point. Then the pain specialist changed me to Buprenorphine Trandsermal Patch which actually work far better than tablets. To control his pain better he needs to make the change in food habits and try the patches, together they have made my life so much better. Like your uncle I was missed diagnosed for many many years; my pain started when I was in my teens. I was plagued with periods of excruciating pain lasing for a few days to a few weeks. 10 years ago the pain came back and didn't go after a few weeks. Instead it got worse to the point where like your uncle it became food related so I stopped eating losing about 30lbs in a few weeks. I only got my diagnosis of MALs a few months ago and it is even less well known over here in the UK.

It looks like you have been a tower of strength for your uncle, I commend your willingness to help and be there for him he will most certainly appreciate everything you have done for him. I have someone who does something similar, in fact it was he who put me onto this website. He doesn't now just how much I appreciate all he does for me as I go through this horrendous ailment. Tell Lou he is very welcome to come and chat, he will find nothing but warm hearts and kindness in this group I know I have.

If you try him out on the anything white diet please let us know how he gets on. It will be helpful for others too to know if it works for him. Just remember it takes a few weeks to get the bad stuff out of his system so tell him to persevere.
All the best!

Mark