• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Gastoparesis

F

Faganlesley

Member
Messages
9
Type of diabetes
Type 1
Anyone dealt or dealing with this as well as crazy blood sugars. In a bad way at the moment and can’t see an out. Recently diagnosed with type 1 and Gastoparesis in constant pain and loosing weight very quickly. Not sure how to cope
 
hi there @Faganlesley
welcome to the forum !

i am tagging @donnellysdogs - she may be able to offer some support on this topic.

meanwhile --- just a big hug from me -- this D is rubbish sometimes.
 
First off welcome!!

What treatment have you got for GP and T1?

Are you being treated at a tertiary care hospital (one that teaches and has professors etc? - not the standard secondary normal town hospital?
 
Hi I’m in Ireland so I’m being treated in Tallaght Hospital which is a teaching hospital. I have a endocrinologist who I’m under for my diabetes and haven’t met a gastroenterologist yet about my Gastoparesis.

My treatment for diabetes is Levemir insulin 22 units per day
&
Novorapid insulin 7 units with every meal

Pantoflux, domerid and maxolon for the Gastoparesis

I’m in constant pain and they’ve given me tramadol but I’ve read that they slow down your digestive system so not the best to take.
 
Please talk to diabetes team about getting you on an insulin pump asap.

This GP is life changing... lets be honest... you need to learn about high fibre and low fibre foods and carbs asap... if you are still eating you must have low fibre food only... and that is difficult... mushy veg is good.. If its cereal I can only eat rice crispies..

Will come back asap today but lots on with it being a Monday.

Avoid bread, meat and pasta....
 

Thank you so much. It’s the pain that’s really getting me down. I can’t seem to control it with anything. Blood sugars are everywhere 23+ sometimes and then at others down to 4 I just can’t get a handle on it.
 
Pain will come largely from eating wrong foods and too much...

Even if you can eat full fat yogurt 3 times a day... try to find tge lowest full fat yogurt and take at same time..

Or maybe a jar of baby food... that has carbs on it...

Please ask for a funded cgm under exceptional funding request if necessary.

Back later....

Your meds sound reasonable...

Are you having sick too??
 

Thanks for all the advice I really appreciate it. What’s a funded cgm?? Yes I am getting sick a couple of times a day. And sometimes incontinent which at 35 years old is making me very depressed.
 
Continuous glucose monitor..

Dont know how Ireland works for funding but ask consultant(s) to organise funding it somehow.

It is the best way to work out the reactions of food in your body and how to react...

Also I found being told to eat 6 small foods a day horrible...but if you can do it, it can help maintain some weight..

You will need to try to keep to certain food that is ok for your body... and the only way through this is really by you experimenting on the advised foods.... but dont believe everything dietitian says...we are all different, some can manage some foods, some cant...

The runs willbe from too much meds....

More important to findlittle foods that you can eat...

Are you also on bolus injections for food?

An insulin pump would be better as this means if you are sick you could turn the pump off temporalily so more insulin doesnt get in you...
Orif you go up high ypu can put on a temporary basal rate or extra bolus...
For pumps thoughypu must have good carbcounting skills and willingness to commit.

You need to keep very exact diaries of insulin, food, reactons, day activities, meds etc. Veryimplrtant...
 


Except, its for life!! And not just needing imodium or staying fasting for a couple days...

You need a gastro person asap... a good, top professional...
I take it you've had the cameras up and down??

Have they done every test like the SIBO test and for POTs and checked stomach for gastritis etc?
 
Please join the face group page (closed group) for GIFTuk. The gastroparesis intestinal failure trust.

You will get alot of info there and advice on meds, treatments and progress of this disease.

Remember we are all different and some people progress to feeds before otgers and the main thing you really need to find out is how to keep weight on and the advice from T1's...

Despite cgronic probs I ammore like to get my colon removed first before my stomach fully gives up....

When you do see a gastro...

Please ask them to list their plans for you... ask themfor a copy...

My gastro said he was thinking of plans A to F and currently I have maintained myself at plan D...

I know what the start point was, weight loss for a size 10 being 2stone was horrific. I have actuallybeen able to maintain my weight at a size 10 now I have managed to gain it.

I have managed to get from a smoothie a day up to a small, small dinner plate of food.

Most important though is to remove onions, garlic, leafy food...meat, breads, pasta..
At least it was for me.
Very few can eat red meat. Some can eat chicken. No fat from meat...

Get some protein powder and a food blender...
 
Sorry for the late reply to your messages. I’m back in hospital for the 5th time since September. Hopefully they’ll help me this time cause I’m struggling to cope with this diagnosis
 
Faganlesley said:
Sorry for the late reply to your messages. I’m back in hospital for the 5th time since September. Hopefully they’ll help me this time cause I’m struggling to cope with this diagnosis
Click to expand...

Oh my golly.. i am so, so sorry to hear this.

What made them admit you?

I hope you get to see a good gastro quickly.

Please let us know how you get on... will be thinking of you.. x
 
I’d been vomiting so badly I had ketones of 6.1 and very dehydrated.

Having a nuclear meal next week to see if there is anything they can do for me. Hopefully they can.
 
Have they kept you in?
Or discharged you?

Glad you getting the nuclear meal and quickly.

Have you been vomiting with just sips of water? Or have you been able to identify food that has caused you to vomit?

It is a life changing illness that you will need to really scrutinise everything and you may well need to have some nourishment via a feeding system to bypass your stomach. Log everything-that is the only thing you can do at the moment... I know that even sips of water can make some people vomit... so if this is the case then you do need to request a system to get some nourishment in you.

Please let ys know if you are still in hospital or discharged and how you are.

The other thing to make sure you have is a thermometer in your home for taking your temperature..due to low nutrition you can be more susceptible to infections and if you get abtemoerature at any time pleasebseek medical advise urgently.

Thinking of you... xx
 
Wow you are so kind. I’m in they are keeping me here for another week or so. Sips of water kill me for throwing up as I have no food the water just makes me throw up and makes acid in my stomach come up.

They have me on iv insulin and potassium.

Haven’t talked about a feeding system yet.

I never get high temperatures thank god but my blood pressure is high and my pulse is running around 120bps

If I was a horse I would be put down
 
Aaaaw, I am so, so sorry that you are having to go through this.

Are you getting any nourishment at all??

Please ask how the can provide your body with some nutrition asap...
 
I’m eating very small bits of food. So hopefully I’m getting something from the bits that don’t come up.
 
Log what stays down and what is puked!!

Although its tough, see if you can make your own records in hospital...

Who decides food you are getting? Are they monitoring all the pukes, food choices etc?
 
I’ve stopped getting sick now as they have me pumped with anti sickness meds.

The hospital gives the food. Generally chicken, meat and fish options. I normally pick the fish as that seems to be lighter
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…