The all-inclusive T1ED + gastroparesis thread

[asortafairytale]

Hi all,

The purpose of this thread is to provide a place for members to discuss concerns regarding gastroparesis as this is a common complication of diabetes and eating disorders. Prolonged high glucose levels can damage the stomach nerves and cause delayed gastric emptying. Anyone is still very welcome to start their own separate threads on topics of this theme but this all-inclusive one serves as a place with a little less exposure as we know it can be daunting to start entirely new posts in a mostly empty forum.

Best wishes,
asortafairytale.

 

[saruhbeau]

Does anyone else here suffer with gastroparesis? I haven't had a definite diagnosis yet. I am waiting for a gastro referral. My GP and Dr's at hospital after two admissions in the last month due to vomiting and dehydration are sure it is gastroparesis though.

I first started getting symptoms 9 months ago. It started with getting full quickly and occasionally vomiting after eating. Recently it has got a lot worse and there are days/weeks where I can't keep water down. I also have been extremely constipated.

I have tried most medications available. At the moment I take domperidone three times a day and ondansatron if it is particularly bad. Unfortunately I have found it difficult to get prescribed ondansatron from my GP. The hospital prescribes it no problem but my GP says it is only for patients on chemo. It is the only thing that gives me a break from vomiting though!

All these symptoms started after I got good glycemic control after a long period of omitting. I also found out I have severe retinopathy and maculopathy this year. It is so depressing that this happened after I got good control.

I am finding it very hard to deal with the gastroparesis. It is getting me extremely down. I have a phobia of vomiting anyway and on bad days it just sucks. My diet is extremely limited and I am mostly sticking to soup and fortisip at the moment.

I wondered if anyone else has had the same problem and if it improves?

 

[Juicyj]

Hello @saruhbeau I'm tagging @asortafairytale for her input on this, thanks

 

[asortafairytale]

Hi @saruhbeau!

I am sorry you are dealing with all this right now .

I don't have a gastroparesis diagnosis either but believe I definitely have symptoms of it. i think it can be worse sometimes to be in that unknown category where they won't actually allow for any treatment. I hope your referral comes through soon. RS?

I don't think you can reverse the damage to those stomach nerves but you can certainly manage it from becoming worse and I believe the stomach can heal somewhat sensitivity wise if you can stick to softer foods for a while then reintroduce solids.

@jacqfromdwed has some more experience with the process of treatment and diagnosis etc for this I believe.

 

[saruhbeau]

Thanks @asortafairytale

I have had a really bad weekend with nausea and vomiting again. It is miserable.

My GP has prescribed a couple of different things, metoclopramide which made me feel weird, and domperidone. I take domperidone but it doesn't help much. The only thing I have found helpful is ondansatron which the hospital prescribed after I stayed in last. It causes bad constipation though which then makes me sick so it isn't ideal, I only take it if I can't keep anything down.

Yes my referral is at Royal Surrey. I received a letter to say they have received the referral so I'm waiting for an appointment. The whole process takes so long!

The last few weeks my control has slipped, not badly but I had got it quite good. Now I am too scared of having a hypo cos if I'm sick I can't treat it. So I have been less strict about correcting incase I have a hypo.

I'm sorry you have the symptoms too. Its the most unpleasant thing I have ever had. I have been off work over a month cos it is so unpredictable I will just be grateful once I know what it actually is. Sometimes I think it's gastroparesis but other times it doesn't fit the symptoms and is more like reflux or something. I have no idea! It's sent my anxiety sky high as early onset bowel cancer runs in my family and I keep thinking it could be that. I doubt it but it's the not knowing.

Thanks for letting me moan away!x

 

[saruhbeau]

I forgot to add, I kept a food diary too and tried sticking to a liquid/cracker diet and slowly introduce low fat/low fibre foods which are meant to be better for gastroparesis.

I didnt find that helped much, because if I am nauseous it is really bad and I am sick even if I drink water. Inbetween I can usually eat and drink fine and there's no middle ground. That is what makes me think it isn't GP. I will have to just wait and see.