Gastroparesis

[Rozee]

Hi

I’m new to the forums but my son was diagnosed with T1 18 years ago.

he was recently diagnosed with gastroparesis and I was shocked when I was told that a gastric pacemaker was probably the best option but the gastro team had to request funding.

I’ve started a petition on Change.org because diabetes is the most common cause of gastroparesis and I can’t believe although it is offered in Scotland and Northern Ireland it is not offered in England.

Please sign the petition, it is so important that we get the right care for this condition.

http://chng.it/vzLfYwpw

 

[everydayupsanddowns]

Hello @Rozee

Welcome to the forum!

Sorry to hear about your son’s gastroparesis. We have a few members here who live with it. @AJLang is probably the most experienced.

I know that it can be very difficult to treat and that there are only a handful of medications (including some off label ones I think) which might help. I also believe dietary changes including a small particle diet are often recommended.

Hope your some finds a way to live well with it.

 

[Rozee]

Thanks.

my heart goes out to anyone with the condition. As always, until you hear firsthand you don’t appreciate how bad it is

 

[AJLang]

Sorry for the quick reply but I’m at the pub drinking wine and having a good time. I have been very careful with my wording of that first sentence because I want to show that you can still have a very good life post gastroparesis diagnosis. My severe gastroparesis was diagnosed with a gastric emptying study ten years ago and at various times it was suggested that it would be a life of gloom and several years ago that I would be in a diet of puréed food and possibly liquids. Well I’ve just enjoyed a very nice bowl of onions rings. The illness is a right pain the butt and I soon know when I’ve eaten too much and it can be flipping uncomfortable/painful so I carefully check what I personally can manage. I do have a higher than recommended dose of domperidone (it is prescribed at this higher amount) plus liquid erythromycin. Domperidone does have cardio risks but I’m very fortunate that all of my eCGs are ok. The key for me has been an insulin pump (seven years this month) and keeping my HBA1cs in the mid to low 6’s. I do have to be extremely vigilant to do this and use a Freestyke Libre plus finger prick sticks. I probably eat two snack size meals a day plus my main dinner. I really feel for your son and hope that he finds a way through this and doesn’t give up hope. The most important thing is to make the most of the life he has. I’ve been diabetic since I was two and it will be my 50th Diabetes anniversary in April 2021.

 

[Rozee]

Thank you. That is so good to hear. My son was due to go on a mandatory 6 day hospital course for the Libre but he’s missed that as he is in hospital.

We are waiting for a bed in the gastro ward and I will speak to the diabetes care team about the insulin pump. He’s pretty fed up at the moment, but just seeing a way out of this would help.

Thanks again for your insight, it’s really encouraging to hear a positive experience