Gastroparesis

[Jennofspades]

Does anyone have gastroparesis? Type 1 for 11 years. Struggling to enjoy any meals but force feeding myself. Feel sick more often than not and end up being physically sick at least 3 or 4 times a week. Have diahrea more often than not. Sugars well controlled, as well as they've ever been anyway. Hb1c came back as the equivalent of 7ish BM reading which I don't think is too bad. With it being summer can't get an appointment at doctors. Also getting a lot of chest pains. Not sure if related or whether it's just anxiety from worrrying about health? Just looking for thoughts, feelings, advice. Am I being a hypercondriac? Been going on about 6 weeks. Sometimes worse, sometimes not bad. Tried excluding gluten and dairy, no change.

 

[Diakat]

@donnellysdogs has it. She has lots of useful advice.

 

[DCUKMod]

Does anyone have gastroparesis? Type 1 for 11 years. Struggling to enjoy any meals but force feeding myself. Feel sick more often than not and end up being physically sick at least 3 or 4 times a week. Have diahrea more often than not. Sugars well controlled, as well as they've ever been anyway. Hb1c came back as the equivalent of 7ish BM reading which I don't think is too bad. With it being summer can't get an appointment at doctors. Also getting a lot of chest pains. Not sure if related or whether it's just anxiety from worrrying about health? Just looking for thoughts, feelings, advice. Am I being a hypercondriac? Been going on about 6 weeks. Sometimes worse, sometimes not bad. Tried excluding gluten and dairy, no change.

Jenn - I don't have gastroparesis, but wanted to ask how long you tried cutting out gluten? The only reason I ask is it can take several weeks before any positive impact can be felt.

Like most things, it varies from person to person.

I would also say that if you are experiencing chest pain, you shouldn't be ignoring it.

 

[donnellysdogs]

Chest pain should not be ignored, if you cant get to see a gp. Please get to a walk in centre.

You may well find that it is certain foods that are problems. Ie if you are having reflux then eliminating all onion and tomato from diet will help enormously.

If you can see leafy products come out whole in loose poo then it can be worthwhile eliminating them.

You need to get a GP appt and if nevessary take photos of poo daily as proof. With a list of what food you ate previously.

Ask for an appt to see a gastroenterologist. If you can afford £250 to book an appt with a consultant privately, tgey would refer you back thru NHS for the actual tests. Go armed with a name of a consultant, to your GP and ensure it is one that is in tertiary care hospital. These still see patients quickly thru private care initially and can put you back thru nhs.

Eliminating gluten didnt help me. I had to eliminate everything that couldnt be pricessed by my stomach and colon. I have chronic inertia in colon and mine does not push anything through and therefore needed morphine to get poo eliminated!!
However sickness can be helped by eliminating meat, pasta, bread cereal initially and see if this helps..

I found I can only eat certain mushy veg. No fruit or veg with skins on. No tomatoes or onions. My salad consisted only of avocado and skinned cucumber.. so I gave up trying to eat that. I now eat mushy butternut squash, courgette, broccoli everyday for iron, celeriac. Nothing leafy like lettuce, or cabbage.

https://m.facebook.com/groups/195148823921228. Gastro and intestinal failure uk facebook group

Is good help but you need a gastro referral urgently.
Also if you having chest pain you should tell the receptionist and they should get you an emergency appt with doc.

 

[Jennofspades]

Hi guys, thank you so much for your response.

I finally got through this morning and managed to get an appointment today. The doctor was really good and has referred me to aintree hospital. She checked oxygen levels and blood pressure and didn't seem worried about the chest pain but seemed to come to the same conclusion as I did about what it might be RE the gastroparesis. Hopefully I'll get some answers soon!

 

[Jennofspades]

Chest pain should not be ignored, if you cant get to see a gp. Please get to a walk in centre.

You may well find that it is certain foods that are problems. Ie if you are having reflux then eliminating all onion and tomato from diet will help enormously.

If you can see leafy products come out whole in loose poo then it can be worthwhile eliminating them.

You need to get a GP appt and if nevessary take photos of poo daily as proof. With a list of what food you ate previously.

Ask for an appt to see a gastroenterologist. If you can afford £250 to book an appt with a consultant privately, tgey would refer you back thru NHS for the actual tests. Go armed with a name of a consultant, to your GP and ensure it is one that is in tertiary care hospital. These still see patients quickly thru private care initially and can put you back thru nhs.

Eliminating gluten didnt help me. I had to eliminate everything that couldnt be pricessed by my stomach and colon. I have chronic inertia in colon and mine does not push anything through and therefore needed morphine to get poo eliminated!!
However sickness can be helped by eliminating meat, pasta, bread cereal initially and see if this helps..

I found I can only eat certain mushy veg. No fruit or veg with skins on. No tomatoes or onions. My salad consisted only of avocado and skinned cucumber.. so I gave up trying to eat that. I now eat mushy butternut squash, courgette, broccoli everyday for iron, celeriac. Nothing leafy like lettuce, or cabbage.

https://m.facebook.com/groups/195148823921228. Gastro and intestinal failure uk facebook group

Is good help but you need a gastro referral urgently.
Also if you having chest pain you should tell the receptionist and they should get you an emergency appt with doc.

Hi donnellysdogs. Do you know how I go about booking a private appointment? I rang the hospital today who said there's an 18 week wait and I don't really want to wait that long. I've never gone privately before though - should I just ring the GP?

 

[donnellysdogs]

First off google consultants at tertiary hospitals say for mine it was Addenbrookes.
I then looked at surgeons at that hospital and even then went on to the gmc website and looked at their specialities......
I then googled their names and see if they did private work (nuffield or spire) or had a secretary to contact.

In all cases with me I have then booked tgrough their private secretary and talked to them.

I then booked appt directly with the secretary.

First secretary for stomach didnt mention about then going back to nhs list, the consultant did. Last secretary asked if I was self funding. This last appt for orthapaedic. She said likely I could go back thru nhs for op. Op was booked for 29th thru nhs but yest got phone call to say brought forward to 1st!! Thats a full 6 weeks before the appt that my supposed GP booked for wrong dept and ended up with appt for rheumtology nurse-thats before even seeing a consultant 18 weeks on and another 18 weeks for op! So all sorted within 4 weeks!

I havent told my GP at all about this orthapaedic appt. letting surgeon do that in his letters.

Wirthwhile asking the sec retary if consultant will need letter for private consultation from GP? If so, just request it and say its urgent private appt. I havent needed to go through GP for pain, stomach or hand. I just used google, found surgeon at hospital that I was happy with, found out private details and booked.
Took less than 2 hours to do... first time doing took me longer as this was 20 years ago but last two times its been easier to do with google and gmc website..

Even writing at xmas to professor for my 2nd mastectomy I looked up who I was happy with, and wrote letter directto him thru nhs. Never met him before and he was happy to see me quickly, sorted and my supposed healthy boob removed April-it was found to be not healthy... so it is worth taking time and figuring out the hospiital you happy with (as this will be the one they put you back to on nhs) and then find the consultant or professor that you are happy with.

Hope this helps...

 

[donnellysdogs]

@Jennofspades see above..