JAWM I cannot eat anything

[SHP]

I have been undergoing GI testing and as the results come in it is chaos, everything contridicts. 

I eat a high fiber diet to prevent diverticulitis flares.

I have gastroparesis and need to eat a low fiber diet.

There are more restrictions coming from the last set of tests that I just got back. Basically, it confirmed that I need to blenderize my food. Taco Tuesday will be interesting. 

[Spryte]

Ouch, that stinks!

 

[Melissa in Australia]

Will it be temporary or forever? 

[Jean in Newcastle]

I'm so sorry.  That's really tough.  Do they know the underlying causes of these problems?  I'm hoping that perhaps if they identified those and treated those that eventually your gut might heal and might be able to handle more variety in textures and cooking methods. 

[Kassia]

That must be incredibly hard.  I'm sorry.

[Carrie12345]

4 hours ago, SHP said:

Taco Tuesday will be interesting. 

I know it’s not funny, but that’s funny.

 I’m sorry. My stepdad has similar issues (including diverticulitis) that make finding the right diet impossible. That’s awful. 

[DawnM]

Oh my goodness.   That is tough.

[73349]

I'm sorry. *hugs*

Here is a black bean soup we like, if you'd like to pivot to that today: https://www.goodhousekeeping.com/food-recipes/healthy/a42397/smoky-vegan-black-bean-soup-recipe/

 

I hope you get more helpful direction from the doctors soon.

Edited December 27, 2022 by 73349

[theelfqueen]

Once you have all the recs, maybe meet with a dietitian for some guidance and practical advice. 

[Grace Hopper]

8 hours ago, Jean in Newcastle said:

I'm so sorry.  That's really tough.  Do they know the underlying causes of these problems?  I'm hoping that perhaps if they identified those and treated those that eventually your gut might heal and might be able to handle more variety in textures and cooking methods. 

Agree! It’s discouraging but there is hope! One of my loved ones went through routing out the serious mysterious GI issues, went through a gastroparesis (among other things) diagnosis gauntlet and time of restrictive dieting, but is now on the other side and is able to enjoy many foods. I hope you are also quickly through the stages of figuring it all out and start to feel better soon!

 

fwiw, a low FODMAP diet seems to be helpful for a variety of issues. I do not have to eat a ton of fiber for my diverticulitis to stay under control, just enough to keep things moving. Hydration and exercise also have a lot to do with gut motility so that’s a help that has nothing to do with food. 

[SHP]

10 hours ago, Melissa in Australia said:

Will it be temporary or forever? 

Forever

9 hours ago, Jean in Newcastle said:

I'm so sorry.  That's really tough.  Do they know the underlying causes of these problems?  I'm hoping that perhaps if they identified those and treated those that eventually your gut might heal and might be able to handle more variety in textures and cooking methods. 

Not a clue on the causes. I am not diabetic and didn't have surgery that caused damage, the two most common causes. The 3rd most common cause is statistically almost impossible, but I am waiting for the biopsy results to know for sure.

6 hours ago, Carrie12345 said:

I know it’s not funny, but that’s funny.

 I’m sorry. My stepdad has similar issues (including diverticulitis) that make finding the right diet impossible. That’s awful. 

I am trying to keep a positive attitude and making jokes helps. It would be entertaining to blenderize a taco. I picture blenderizing each ingredient separately and layering them in a mason jar like some new diet fad. I might serve one of the adultlings for that for dinner just to see the look on their face.

53 minutes ago, theelfqueen said:

Once you have all the recs, maybe meet with a dietitian for some guidance and practical advice. 

I will once all the testing is complete and the results are in. I also have to have blood work to check vitamin deficiencies, I am waiting on biopsy results, and they want at least one more test. It could be more but everything is happening so fast I may have missed it.

Edited December 27, 2022 by SHP

[Kanin]

You have my sympathies. My DH has had food/gut issues for at least a decade, and we're both over it. 

The only thing that seems to be helping with motility (finally), is the SCD (specific carbohydrate diet). Even then, some of the things that are on that diet, DH can't tolerate - right now, nuts, eggs, and yogurt are out. We're hoping they could go back in, at some point. He's in the midst of testing, too. It's stressful!!

Hope you get some helpful information soon. I agree that the conflicting advice (high fiber for one thing, low fiber for the other!) is so frustrating.

[SHP]

44 minutes ago, Grace Hopper said:

 Hydration and exercise also have a lot to do with gut motility so that’s a help that has nothing to do with food. 

Hydration recently became a problem. I cannot recall what they called it, they gave me a diagnosis but so much is happening so fast I do not recall this morning. I don’t make enough saliva and other bodily fluids. I bought a zero calorie sports electrolyte mix and drink at least 32 ounces of it with my main meal in addition to constantly drinking water and my hot beverages that are ok (Apple Cider is safe, I am still working on various loose herbal tea blends and figuring out which ingredients are ok and which are not. I love ice cold water

 

Prior to getting sick I was working out. 💪 by 9am I had 10,000 steps and was making incredible progress lifting weights. At the end of my workout I put 40lbs on my chest and did sit-ups and other core work. I really miss it.

I had to stop when I first got sick, per doctor's orders, we both thought it would be temporary. It wasn't. Now I can barely lift 25lbs. 50lbs is almost impossible. The sucky part is that part of my job should be lifting 50lbs regularly. Before this I could grab a box with 50lbs in it and get it where it needed to be without issue. Repeat until I have lifted and moved 1,000lbs without breaking a sweat. Now? I use a cart and struggle and need help. I hate it, but I cannot get enough calories in to go back to a moderate or intense workout yet. 

I do walk, though after dinner walking came to a grinding halt with this cold snap. 🥶  I am looking for nearby indoor non mall walking options that are free and open after 5pm without much luck. 

I tried waking the stairs in the house but kept getting distracted by all the little things. We all know how it goes, the cat was not happy with their warm bed and stole a towel again and I need to put it in the hamper. The hamper is next to the laundry basket full of clean clothes so I put away the clean clothes. I see I have almost enough to start another load, so I change the sheets and remake the bed and add the dirty sheets to make a full load and start it. Then I notice that the laundry/storage room has started to get a bit messy and disorganized. 2 hours later and I managed a single flight of stairs.

I know that sitting after a meal is the worst thing I can do so I don't do that. I may not be getting my heart rate up or walking X distance or time, but I am standing and moving around. 

[Melissa in Australia]

Huge hugs

 

[Grace Hopper]

2 hours ago, SHP said:

Hydration recently became a problem. I cannot recall what they called it, they gave me a diagnosis but so much is happening so fast I do not recall this morning. I don’t make enough saliva and other bodily fluids. I bought a zero calorie sports electrolyte mix and drink at least 32 ounces of it with my main meal in addition to constantly drinking water and my hot beverages that are ok (Apple Cider is safe, I am still working on various loose herbal tea blends and figuring out which ingredients are ok and which are not. I love ice cold water

 

Prior to getting sick I was working out. 💪 by 9am I had 10,000 steps and was making incredible progress lifting weights. At the end of my workout I put 40lbs on my chest and did sit-ups and other core work. I really miss it.

I had to stop when I first got sick, per doctor's orders, we both thought it would be temporary. It wasn't. Now I can barely lift 25lbs. 50lbs is almost impossible. The sucky part is that part of my job should be lifting 50lbs regularly. Before this I could grab a box with 50lbs in it and get it where it needed to be without issue. Repeat until I have lifted and moved 1,000lbs without breaking a sweat. Now? I use a cart and struggle and need help. I hate it, but I cannot get enough calories in to go back to a moderate or intense workout yet. 

I do walk, though after dinner walking came to a grinding halt with this cold snap. 🥶  I am looking for nearby indoor non mall walking options that are free and open after 5pm without much luck. 

I tried waking the stairs in the house but kept getting distracted by all the little things. We all know how it goes, the cat was not happy with their warm bed and stole a towel again and I need to put it in the hamper. The hamper is next to the laundry basket full of clean clothes so I put away the clean clothes. I see I have almost enough to start another load, so I change the sheets and remake the bed and add the dirty sheets to make a full load and start it. Then I notice that the laundry/storage room has started to get a bit messy and disorganized. 2 hours later and I managed a single flight of stairs.

I know that sitting after a meal is the worst thing I can do so I don't do that. I may not be getting my heart rate up or walking X distance or time, but I am standing and moving around. 

Wow I am so sorry, of course that must be very discouraging. I hope some good answers and the return of warmer weather comes quickly for you. 

1 hour ago, Melissa in Australia said:

Huge hugs

 

Repeat, repeat. 

[mommyoffive]

I am so sorry.

[prairiewindmomma]

Hugs! 
 

If you ever want to talk about blender diets, there are a number of us here who have relative experience—either from family with dysphagia, or family with g-tubes or the like. 

[Hilltopmom]

14 hours ago, prairiewindmomma said:

Hugs! 
 

If you ever want to talk about blender diets, there are a number of us here who have relative experience—either from family with dysphagia, or family with g-tubes or the like. 

Ditto. Also there are specific medical prepared formulas that may be able to meet some of your nutritional needs too. (And be covered by health insurance)

 

[kbutton]

First, hugs! I have weird dietary stuff with MCAS that is very trial and error, and food issues really hit lifestyle stuff hard. It stinks. You are not alone, but it can often feel like it.

Some possible avenues to explore--trying to keep in mind the JAWM, but I think these are all just options that might lead to options...our family has had some medical challenges come home to roost after getting off relatively lightly in some areas (getting lucky, honestly!), and one thing that has become clear is that some practitioners are supportive and diagnostic and some are simply diagnostic. The ones that are supportive make life so much better, and if you have options, seek out a supportive practitioner. My definition for that is that the practitioner is a problem-solver who understands that patients have lives to live and need flexible, realistic solutions. Flexible and realistic clearly vary by the parameters of the problem, but they do what they can to make those parameters as freeing as possible. Pediatric specialists are much better about this, and it's largely because they have to get parents and kids on board, and then they have to sometimes even work with schools, etc.--the constituents complain, and it pushes them to learn. Parents will advocate for their children in ways they will not or cannot for themselves.

For instance, I know adults on warfarin that are told a whole bunch of rules around Vitamin K. My son was put on warfarin...guess what the hard and fast rules ACTUALLY are? Next to nothing. 1. Eat a steady amount; most people naturally eat similar stuff every day. The problem comes up with things like going on a sudden diet to be healthier, etc. Or going to camp--my son went to a camp with healthy food, but they put a ton of black pepper on the veggies. So, his INR was off that week, and they fixed it. Big whoop. 2. Let them know when your gut is off--vomiting, diarrhea, etc. That's pretty much it. The hematologist said that adult hematologists do cancer, cancer, cancer and either don't like to do the other stuff or just don't do it as often. So adults are often stuck with crappy advice. 

So nicely put stuff back on the practitioner's to help problem-solve. 

Consider finding reputable organizations and Facebook groups focused on these issues--often they have the latest greatest information with webinars, etc., and they can clarify stuff. For instance, one poster said something about not really needing to be as high fiber as she would've thought...well, those organizations are full of people who have figured this stuff out and can help you! They will also have seen people with conflicting needs usually. They will know things like whether fiber is fiber for the purposes of your conditions or whether soluble and insoluble fiber are different considerations, and it could lead to more options or more strategies for the options you have left.

Also, consider finding out if your insurance offers a nurse advocate/support/care coordinator (and some specialist offices have this built in also). They know stuff or know how to find out stuff. My son was offered one via insurance--she's amazing. 

3 hours ago, Hilltopmom said:

Ditto. Also there are specific medical prepared formulas that may be able to meet some of your nutritional needs too. (And be covered by health insurance)

This is the kind of thing that a nurse care coordinator might know, or a nurse care coordinator might know how to get a nutritionist who knows this covered when a doctor is clueless about what direction to point you or how to do a proper referral.

Anyway, I hope that helps. The more helpful the helpers are, the more you learn what you can ask for. 

I hope you get a snowball of resources that grows into a carefully controlled avalanche of support!

Edited December 28, 2022 by kbutton

[SHP]

6 hours ago, kbutton said:

First, hugs! I have weird dietary stuff with MCAS that is very trial and error, and food issues really hit lifestyle stuff hard. It stinks. You are not alone, but it can often feel like it.

Some possible avenues to explore--trying to keep in mind the JAWM, but I think these are all just options that might lead to options...our family has had some medical challenges come home to roost after getting off relatively lightly in some areas (getting lucky, honestly!), and one thing that has become clear is that some practitioners are supportive and diagnostic and some are simply diagnostic. The ones that are supportive make life so much better, and if you have options, seek out a supportive practitioner. My definition for that is that the practitioner is a problem-solver who understands that patients have lives to live and need flexible, realistic solutions. Flexible and realistic clearly vary by the parameters of the problem, but they do what they can to make those parameters as freeing as possible. Pediatric specialists are much better about this, and it's largely because they have to get parents and kids on board, and then they have to sometimes even work with schools, etc.--the constituents complain, and it pushes them to learn. Parents will advocate for their children in ways they will not or cannot for themselves.

For instance, I know adults on warfarin that are told a whole bunch of rules around Vitamin K. My son was put on warfarin...guess what the hard and fast rules ACTUALLY are? Next to nothing. 1. Eat a steady amount; most people naturally eat similar stuff every day. The problem comes up with things like going on a sudden diet to be healthier, etc. Or going to camp--my son went to a camp with healthy food, but they put a ton of black pepper on the veggies. So, his INR was off that week, and they fixed it. Big whoop. 2. Let them know when your gut is off--vomiting, diarrhea, etc. That's pretty much it. The hematologist said that adult hematologists do cancer, cancer, cancer and either don't like to do the other stuff or just don't do it as often. So adults are often stuck with crappy advice. 

So nicely put stuff back on the practitioner's to help problem-solve. 

Consider finding reputable organizations and Facebook groups focused on these issues--often they have the latest greatest information with webinars, etc., and they can clarify stuff. For instance, one poster said something about not really needing to be as high fiber as she would've thought...well, those organizations are full of people who have figured this stuff out and can help you! They will also have seen people with conflicting needs usually. They will know things like whether fiber is fiber for the purposes of your conditions or whether soluble and insoluble fiber are different considerations, and it could lead to more options or more strategies for the options you have left.

Also, consider finding out if your insurance offers a nurse advocate/support/care coordinator (and some specialist offices have this built in also). They know stuff or know how to find out stuff. My son was offered one via insurance--she's amazing. 

This is the kind of thing that a nurse care coordinator might know, or a nurse care coordinator might know how to get a nutritionist who knows this covered when a doctor is clueless about what direction to point you or how to do a proper referral.

Anyway, I hope that helps. The more helpful the helpers are, the more you learn what you can ask for. 

I hope you get a snowball of resources that grows into a carefully controlled avalanche of support!

I have learned the hard way about providers and I now watch my medical records like a hawk. 

I was diagnosed with gastroparesis and a couple of other things last year. That doctor (at another medical facility) told me that all my tests were normal and stopped my medication.

After I ran out of the medication I was hoarding I came very very close to a less than desirable outcome to a choking incident. I freaked out and called my primary care doctor's office and spoke to the nurse. Thankfully my husband was home and took the phone to calmly explain to the nurse that I was not exaggerating when I said I would not eat and would look for less than legal ways to get the meds if they didn't prescribe them for me and send me to a different GI. New GI has basically been "wow, you are very very sick".

I know other specialties in the new medical facility have care coordinators, social workers, nutritionists, etc. I will ask about that when I speak to them next. Still waiting for a biopsy result and am expecting to have 2-3 more tests.

I am in some support groups. I will be honest, what some of the people are going through absolutely terrifies me. I don't relate to what a lot of people talk about. I am fortunate that I do not register pain like most people and I have close to zero pain from this. My goals are also a bit different. I really want to get back to weight lifting. I have a baseline of what I need for calories and macros from before I got sick and I just want to get back to that. I haven't found anything that is this specific.

I will try insurance, thankfully I have Medicare in addition to private insurance, the private insurance is crap and the company is refusing to respond to the union about any of the current negotiations. Ghosting as a tactic to fight union. The messed up part is that what they are asking for will have zero cost to the company. Hopefully the GI clinic or Medicare have something so I can avoid trying to get someone with the private insurance and then having to start over when the union/company sorted things out.

[kbutton]

4 minutes ago, SHP said:

I am in some support groups. I will be honest, what some of the people are going through absolutely terrifies me. I don't relate to what a lot of people talk about. I am fortunate that I do not register pain like most people and I have close to zero pain from this. My goals are also a bit different. I really want to get back to weight lifting. I have a baseline of what I need for calories and macros from before I got sick and I just want to get back to that. I haven't found anything that is this specific.

You probably won't find exactly what you are looking for, but you might find breadcrumbs. Some groups are  more positive than others, so it can take time to find the right one, if it exists.

It sounds like you are doing a lot of really good things, and I hope reaching out to the new facility will be worth your time.