Dipagliflozin questions

[FedUp!]

Hello

Sorry in advance for long post and all the questions!

My diabetic nurse has put me on Dipagliflozin as Metformin wasn’t controlling my blood sugar. So now I’m on both.

I’ve not been eating a lot because a) I haven’t really got an appetite and b) because most of the stuff I’ve been eating has been giving me stomach cramps and a bad tummy.

Due to extensive surgeries on my bowel, I already have an extreme hyper sensitive gastrocolic reflex which is triggered by just about everything anyway, but at the moment all I can eat is toast, and even that’s starting to upset my stomach.

Is this normal? And does it go away? I’ve been on it for 10 days so far and I just want to check with people who have experience of this drug. I have asked the nurse and she was lovely but didn’t really give me any answers apart from ‘that can happen’.

Also, it’s giving me REALLY smelly wee. I’ve got no symptoms of a UTI apart from that. The only thing I can find online mentions sweet smelling wee but it’s definitely not that! It’s also foamy sometimes.

I probably just need some reassurance that all this is actually normal and that it goes away because I can’t just keep eating toast. Apart from the lack of proper nutrition, I hate to think what it’s doing to my blood sugar!

Thanks for reading and any responses.

Ang

 

[saffron15]

@FedUp! I did a reply but my Internet dropped off. I'm having another go and will start with my conclusions then indicate my experiences on metformin and dapaglifozin (forxiga)
I replied when you first posted some weeks ago.
You indicated you had a BG monitor. I would test. I was given ketostix with my dapaglifozin which I started in September. Despite a few utis years ago I've not had any since taking it but it is a common side effect. I tested once for ketones few weeks ago and was normal. My view is you should test.
Metformin can be a problem if you have digestive problems. When I started on dapaglifozin my metformin reduced to 2.
I remember you thought your diabetes maybe steroid induced. I don't know if you are on them longterm or intermittantly. In view of your bowel problems has anyone discussed whether insulin may be the better way forward even if only temporarily? Are you still under consultant care?
After you have tested contact hospital if high ketones otherwise try and get an urgent appointment with your surgery. Eating just toast for a diabetic is bad. It maybe if it's all you can manage you should reduce your medication. Maybe the available meal replacement shakes would help. However, you need better nutrition and a view taken if your medication should be reduced. I was told dapaglifozin is good for cardiovascular health. You need urgent advice.

 

[saffron15]

I'm surprised noone else has answered. I hope my reply was seen as supportive rather than overly tough. I don't know what physical or emotional difficulties you may have ( nor am I asking you to reveal) I have no medical knowledge just keep an interest in what is happening and 9 months ago was diagnosed with diabetes type 2 and prescribed metformin and dapaglifozin.
I hope the dust has settled and you have had medical advice as to how to improve your situation.

 

[goodybags]

Hello

Sorry in advance for long post and all the questions!

My diabetic nurse has put me on Dipagliflozin as Metformin wasn’t controlling my blood sugar. So now I’m on both.

I’ve not been eating a lot because a) I haven’t really got an appetite and b) because most of the stuff I’ve been eating has been giving me stomach cramps and a bad tummy.

Due to extensive surgeries on my bowel, I already have an extreme hyper sensitive gastrocolic reflex which is triggered by just about everything anyway, but at the moment all I can eat is toast, and even that’s starting to upset my stomach.

Is this normal? And does it go away? I’ve been on it for 10 days so far and I just want to check with people who have experience of this drug. I have asked the nurse and she was lovely but didn’t really give me any answers apart from ‘that can happen’.

Also, it’s giving me REALLY smelly wee. I’ve got no symptoms of a UTI apart from that. The only thing I can find online mentions sweet smelling wee but it’s definitely not that! It’s also foamy sometimes.

I probably just need some reassurance that all this is actually normal and that it goes away because I can’t just keep eating toast. Apart from the lack of proper nutrition, I hate to think what it’s doing to my blood sugar!

Thanks for reading and any responses.

Ang

Hi there @FedUp!
hope you are not really fed up, and hopefully the HCP’ will be looking after you better if you voice your concern.

there are many different medications available to us
I know a few T2’s who were put on various …’flozines

I appreciate we are all different and obviously following your gastric surgery your needs might be different to somebody else
the main smell you need to look out for is a sweet smell as that can be a sign of Keystones as I think your probably aware

might you just be de-hydrated ?
with flozines it’s important to drink plenty of water

also as @saffron15 has already commented, eating just toast isn’t good
especially if you already have other complications (following your recent surgery)
have you ever been seen / currently under a Diabetic constant at the hospital ?
It might be worth reaching out to them

 

[FedUp!]

@saffron15 and @goodybags thank you so much for replying, and sorry I am so late in replying to you!

Unfortunately I had a bit of a breakdown with my mental health and haven’t been well enough to reply until today.

I took your advice @saffron15 and got some ketostix. Thankfully my ketones were absolutely normal as the colour on the stick stayed the same every time. The glucose, PH and specific gravity (haven’t a clue what that is!), are all as high as can be so I’m not sure what’s happening there or what to do about it but I will tell the nurse. Although she did say one of the meds made you wee out the glucose so maybe that’s ok being that high.

Thankfully the two meds have got my blood sugar more under control. It’s still not normal but it’s now ranging from around 6 - 8 rather than 17+ so that’s got to be good! And I suppose when I can eat something other than toast that might come down a bit too.

I’m going to see my specialist about the stomach issue. I had my 6 monthly colonoscopy in April so I know my cancer hasn’t returned but I think the issue is in my small bowel so I’m sure there will be more investigations forthcoming.

The size of my file at the hospital is embarrassing - everyone else usually sees one specialist and has a few pages and that’s it, my file is about two feet thick with all the different specialists and issues I have. Honestly, if all my strange medical stuff wasn’t actually happening to me, I wouldn’t believe all this could actually happen to one person. It’s got to the point now that every specialist I see takes an inbreath when giving me results and says ‘now this is very strange…’ and then tells me what weird and wonderful thing is wrong. My latest one is that my body can no longer tolerate stress without sending me into spontaneous angiodema and urticaria - basically I am now allergic to stress!

Anyway! Thank you so much for replying. I’m trying to drink more and it is helping with the smell etc. I just need to figure out what I can safely eat that’s not carbs, I’ve tried a few things but it’s so painful I’m afraid to eat anything except toast now. I’ve got a high pain threshold but this is something else. I think it’s a coincidence it’s happened when I started the new pill but it’s totally wrecked my diet.
Any suggestions on a ‘neutral’ non carb food would be gratefully received (but not eggs, food of the devil!).

Thanks again

Ang

 

[Leadinglights]

@saffron15 and @goodybags thank you so much for replying, and sorry I am so late in replying to you!

Unfortunately I had a bit of a breakdown with my mental health and haven’t been well enough to reply until today.

I took your advice @saffron15 and got some ketostix. Thankfully my ketones were absolutely normal as the colour on the stick stayed the same every time. The glucose, PH and specific gravity (haven’t a clue what that is!), are all as high as can be so I’m not sure what’s happening there or what to do about it but I will tell the nurse. Although she did say one of the meds made you wee out the glucose so maybe that’s ok being that high.

Thankfully the two meds have got my blood sugar more under control. It’s still not normal but it’s now ranging from around 6 - 8 rather than 17+ so that’s got to be good! And I suppose when I can eat something other than toast that might come down a bit too.

I’m going to see my specialist about the stomach issue. I had my 6 monthly colonoscopy in April so I know my cancer hasn’t returned but I think the issue is in my small bowel so I’m sure there will be more investigations forthcoming.

The size of my file at the hospital is embarrassing - everyone else usually sees one specialist and has a few pages and that’s it, my file is about two feet thick with all the different specialists and issues I have. Honestly, if all my strange medical stuff wasn’t actually happening to me, I wouldn’t believe all this could actually happen to one person. It’s got to the point now that every specialist I see takes an inbreath when giving me results and says ‘now this is very strange…’ and then tells me what weird and wonderful thing is wrong. My latest one is that my body can no longer tolerate stress without sending me into spontaneous angiodema and urticaria - basically I am now allergic to stress!

Anyway! Thank you so much for replying. I’m trying to drink more and it is helping with the smell etc. I just need to figure out what I can safely eat that’s not carbs, I’ve tried a few things but it’s so painful I’m afraid to eat anything except toast now. I’ve got a high pain threshold but this is something else. I think it’s a coincidence it’s happened when I started the new pill but it’s totally wrecked my diet.
Any suggestions on a ‘neutral’ non carb food would be gratefully received (but not eggs, food of the devil!).

Thanks again

Ang

Quite difficult to make suggestions without knowing what foods you cannot tolerate but the usual things to suggest would be chicken, fish, cheese, yoghurt, sugarfree jelly, fruits like strawberries, raspberries. Home made soups are a good option and easy to make.
I hope you get some answers when you see your consultant.
With the flozin medication you do need to be careful of eating too few carbs so may be worth discussing the medication with your diabetic nurse and saying you are unable to eat much.

 

[saffron15]

I'm pleased you are OK. Dapaglifozon does cause you to pee more. With metformin when I first started ie one tablet it bunged me up same when I went to two then it got looser. However a few days after I got to four I was put on dapaglifozin and metformin reduced to 2. I don't generally have a problem now. I'm on slow release. However I know some people on the forum who have bowel problems have not been able to tolerate metformin. I am sorry that your situation is so stressful. I would have thought the hospitalhas dieticians who can help you with suitable food choices which do not disrupt your bowel but give you sufficient nutrition. A type 2 friendly diet is varied but the filler foods we were used to as we grew up need to be reduced. Probably 130 gms a day of carbs is worth aiming for. If you have no weight to lose then keep your fat and protein up. I have full fat Greek yoghurt plus blueberries and nuts and seeds but I do not know if berries and seeds would irritate your bowel.
You can buy cauliflower rice which acts as a suitable Base where you would have rice. You can buy alternatives to pasta too. In the end apart from not adding sugar to food ( reduce or use sweetners) it is a question of having smaller portions of carbs. Some people use celeriac or swede instead of potatoes. I'm using small quantities of new potatoes at the moment. I like majorcan ones and new potatoes are less carby than old ones. I'm fond of smoked salmon with cream cheese on a slice of bread. Try and up the veg you eat. If you have a freezer frozen veg is fine. I think id avoid sweetcorn

The freshwell app will give you an idea of the pecking order of food. I have previously found a New Forest site has excellent info. I have posted it a few times recently in reply to newbies. Please try not to panic. Make sure you are getting sufficient nutrition

 

[goodybags]

Hi Ang’ glad you are soon seeing a HCP also I wanted to say well done for admitting you have have recently / are currently suffering with poor MH, also was going to ask have you been referred to a Dietitian?

I can say what I did there in my post regarding MH, as a someone currently under extreme anxiety & stress / so easily overwhelmed, (thinking I’m kind of in the poor MH club myself)

Feel free to Pop along to this great forum anytime you want to @FedUp!
TC