Type 2 Diabetes and total colectomy

[Peter.rooke1]

I am type2 and internal pouch ostomist hbn1c is 8.4 GO insists I take metformin even though more than 1-2 tablets per day have bad effect on pouch function. Also take dapagliflozin at max dose with no side effects, have tried facilities same effect on bowel. Due to see GP to discuss hbn 1c just know will try to up metformine again which really effects quality of life. Any other people had total collecting and Type2. Grateful for advice

 

[DCUKMod]

Hi Peter - Thankfully I haven't needed anything like the surgery you've undergone.

I wouldn't like to speculate too much of course, but I wonder if the slow release Metformin could be suitable for you? Many find that kinder on their systems.

Hopefully some others will comment later.

 

[Jo_the_boat]

I'm talking from a position of considerable weakness here Peter, knowing nothing about the complications you face following your surgery and medications but the principal of lowering your BS through diet my still hold true for you. Can you use the low carb approach as a basis for discussion with your healthcare team with a view to moderating your T2 medication?

(as an aside I have a friend called Peter who lives on a boat called Rook)

 

[Peter.rooke1]

Hi Peter - Thankfully I haven't needed anything like the surgery you've undergone.

I wouldn't like to speculate too much of course, but I wonder if the slow release Metformin could be suitable for you? Many find that kinder on their systems.

Hopefully some others will comment later.

 

[Peter.rooke1]

Thank you this has been suggested by Gp also unfortunately slow release drugs work as they move through your digestive system mostly in the large bowel. Unfortunately for me I no longer have one so this type of drug absorption is ineffective for ostomist as we wouldn't absorb enough of the drug, our digestive systems transit food in and out of body in 6-8 hours and we don't absorb many vitamins and minerals well. But thank you for the suggestion , Pete

 

[Peter.rooke1]

I'm talking from a position of considerable weakness here Peter, knowing nothing about the complications you face following your surgery and medications but the principal of lowering your BS through diet my still hold true for you. Can you use the low carb approach as a basis for discussion with your healthcare team with a view to moderating your T2 medication?

(as an aside I have a friend called Peter who lives on a boat called Rook)

 

[Peter.rooke1]

Hi jo,
I have thought about diet considerably and if I had a normal digestive system I would DEFINATELY try this approach and or the Newcastle diet. The biggest problem optimists with diabetes face is that the low residue diet used to manage our condition is almost equal and opposite to a good diabetic diet, nice guidelines and NHS education on diet fall short when it comes to us as carbs are used as a bulking agent to keep our pouch function settled . In my case I try to use a balanced approach across both diets with support of loperimide but it is very difficult.
Thanks for your reply though it is much appreciated.
Pete

 

[donnellysdogs]

Wow. This is a difficult one. My friend has had colon, bladder removal and ology names I cannot spell...but not diabetic...

You are right about carbs..my friend eats porridge everyday for her functioning..

It is very, very difficult to manage innards as well as diabetes..

I too have colon,stomach probs and again limited foods but I have to avoid solids and carbs fortransit issues and always low fibre.

I'm type 1 not 2 but rrally appreciate your problems. Seriously though, everybody is so, so different. It is only by individuals going through their meds and their foods that they become the experts. I do agree that finding another patient with same problems can be so helpful in finding ways through and techniques etc. I asked hospital if they had a T1 that had to inject at 4am as they kept telling me I wasnt the only one and some of their other patirnts also had same early jabs... they couldnt actually phone or talk to any of these supposed patients though... and directed me to ask here.. i'd already done that. My point?you are likely to get some help here.. although it may be that you are unique!!

So wish you well but sorry I cant help but to bump this up..

 

[elle-jay]

Hi Peter
I have type 2 and have had a subtotal colectomy and proctectomy so I don’t have an internal pouch but a stoma bag, however I had similar problems when taking metformin , stomach cramps, excessive wind and watery output which would cause my bag to have a major leaks when at work and out shopping etc
It was extremely embarrassing so I decided not to take metformin and try a lchf
Diet instead, it has been extremely successful my hba1c has come down from 7.9 to 5.6
I haven’t experienced any adverse affects from the increased fat intake (although It might be different with an internal pouch) and I have found that by not eating the bulky starchy carbs (pasta,rice,potatoes etc) I have a lot less output and have to empty my bag much less frequently. I know internal pouches are more difficult regarding diet and control.
This is just my experience and everyone is different so I’m not recommending lchf, I guess it wouldn’t be suitable for you and as always it’s best to discuss any changes with you GP

 

[Pinkorchid]

We can't really recommend any diet for you because only you know how food affects you and what type you need to eat. Low carb and higher fat suits a lot of the people here but may not be suitable for you I hope you will find a way that suits you best

 

[Peter.rooke1]

Wow. This is a difficult one. My friend has had colon, bladder removal and ology names I cannot spell...but not diabetic...

You are right about carbs..my friend eats porridge everyday for her functioning..

It is very, very difficult to manage innards as well as diabetes..

I too have colon,stomach probs and again limited foods but I have to avoid solids and carbs fortransit issues and always low fibre.

I'm type 1 not 2 but rrally appreciate your problems. Seriously though, everybody is so, so different. It is only by individuals going through their meds and their foods that they become the experts. I do agree that finding another patient with same problems can be so helpful in finding ways through and techniques etc. I asked hospital if they had a T1 that had to inject at 4am as they kept telling me I wasnt the only one and some of their other patirnts also had same early jabs... they couldnt actually phone or talk to any of these supposed patients though... and directed me to ask here.. i'd already done that. My point?you are likely to get some help here.. although it may be that you are unique!!

So wish you well but sorry I cant help but to bump this up..

Wow. This is a difficult one. My friend has had colon, bladder removal and ology names I cannot spell...but not diabetic...

You are right about carbs..my friend eats porridge everyday for her functioning..

It is very, very difficult to manage innards as well as diabetes..

I too have colon,stomach probs and again limited foods but I have to avoid solids and carbs fortransit issues and always low fibre.

I'm type 1 not 2 but rrally appreciate your problems. Seriously though, everybody is so, so different. It is only by individuals going through their meds and their foods that they become the experts. I do agree that finding another patient with same problems can be so helpful in finding ways through and techniques etc. I asked hospital if they had a T1 that had to inject at 4am as they kept telling me I wasnt the only one and some of their other patirnts also had same early jabs... they couldnt actually phone or talk to any of these supposed patients though... and directed me to ask here.. i'd already done that. My point?you are likely to get some help here.. although it may be that you are unique!!

So wish you well but sorry I cant help but to bump this up..

 

[Peter.rooke1]

Thank you, you have probably helped me more than you know, As I am struggling with tablets I am thinking insulin may end up as the way forward. Knowing someone with stomach\colon problems is managing their condition with Insulin helps, totally get the 4am thing as I have to get up at least twice every night to manage my condition and its very hard to go back to sleep guess this type of thing comes with the turf when you manage a health condition. IF I do need to move to Insuline at some stage you have made it a lot easier

 

[Peter.rooke1]

Hi Peter
I have type 2 and have had a subtotal colectomy and proctectomy so I don’t have an internal pouch but a stoma bag, however I had similar problems when taking metformin , stomach cramps, excessive wind and watery output which would cause my bag to have a major leaks when at work and out shopping etc
It was extremely embarrassing so I decided not to take metformin and try a lchf
Diet instead, it has been extremely successful my hba1c has come down from 7.9 to 5.6
I haven’t experienced any adverse affects from the increased fat intake (although It might be different with an internal pouch) and I have found that by not eating the bulky starchy carbs (pasta,rice,potatoes etc) I have a lot less output and have to empty my bag much less frequently. I know internal pouches are more difficult regarding diet and control.
This is just my experience and everyone is different so I’m not recommending lchf, I guess it wouldn’t be suitable for you and as always it’s best to discuss any changes with you GP

 

[Peter.rooke1]

Thank you, I am eating a lot more veg etc than before but have had a couple of scares when I thought I was getting a blockage so some foods still no go. However would not be able to go as far with the diet as you have, had major problems with flange leaks when had my stoma so totally get where you are coming from with that, so pleased diet is working for you though and it is interesting that metformin had the same effect on you that it does with me, I hope your hba 1c stays low for many years to come.

 

[Peter.rooke1]

We can't really recommend any diet for you because only you know how food affects you and what type you need to eat. Low carb and higher fat suits a lot of the people here but may not be suitable for you I hope you will find a way that suits you best

 

[donnellysdogs]

Thank you, you have probably helped me more than you know, As I am struggling with tablets I am thinking insulin may end up as the way forward. Knowing someone with stomach\colon problems is managing their condition with Insulin helps, totally get the 4am thing as I have to get up at least twice every night to manage my condition and its very hard to go back to sleep guess this type of thing comes with the turf when you manage a health condition. IF I do need to move to Insuline at some stage you have made it a lot easier

To be honest I would be asking the consultants if there was anyway to get an exceptional funding case put together for an insulin pump.

Yea, this would mean learning about carbs and programming a pump but boy, it does make handling foods and levels easier.

My body know longer accepts insulin pump cannulas but it did for 5 years I was so in control.

Tge trouble is the consultants have to adhere to fixed guidelines from NICE, so they will follow the T2 protocol first... and you will need to fully comply and trial everything (and I advise to log everything on a daily record book ie how you feel, sickness, meds, stomach reactions, activity).... etc

Its a tough journey ahead but keeping daily records of everything is so important.

We are unique. We are the guinea pugs and literally in the first phase of medicines.. so it is so important that us experts keep the specialists educated.

There is absolutely nothing to fear about insulin...

 

[Peter.rooke1]

Thanks, I have modified my diet to take more veg etc less sweet stuff and reduced carb intake with increased exercise and this kept me off metformin for nearly 18 months, the disease seems to be creeping on dispite my efforts ,I guess there are a lot of people on here who can relate to that, I know increasing metformin again is not an option for me and am looking for best way forward, Insuline is an option, I've also been on an American forum which mentions GLP-1 like Victoza has anyone had experience with these drugs and would it bring 8·4 hbn 1c back down to acceptable level

 

[Peter.rooke1]

To be honest I would be asking the consultants if there was anyway to get an exceptional funding case put together for an insulin pump.

Yea, this would mean learning about carbs and programming a pump but boy, it does make handling foods and levels easier.

My body know longer accepts insulin pump cannulas but it did for 5 years I was so in control.

Tge trouble is the consultants have to adhere to fixed guidelines from NICE, so they will follow the T2 protocol first... and you will need to fully comply and trial everything (and I advise to log everything on a daily record book ie how you feel, sickness, meds, stomach reactions, activity).... etc

Its a tough journey ahead but keeping daily records of everything is so important.

We are unique. We are the guinea pugs and literally in the first phase of medicines.. so it is so important that us experts keep the specialists educated.

There is absolutely nothing to fear about insulin...

 

[Peter.rooke1]

Thank you for the advice about Insuline, I do feel stuck in a loop with the nice guidelines was a real fight to even get dapagliflozin prescribed and this really helped, biggest problem is having to explain to GP`s who don't understand internal pouch and want to separate diabetes from other health conditions and blindly follow nice guidelines but I guess that's a whole other topic for another thread, keeping a diary is good advice it's just sad that it gets to that though but at least we have an NHS not everyone in the world has it.

 

[donnellysdogs]

I was told by my gastro that we have A-F to try... we got to D fortunately with me... but always being a T1 can make me say insulin is nothing to fear... but for me, I now also know from others that options E and F are also manageable if it progresses worse for me. So thank you to you and my pal for making me realuse this....

None of us are the same, we are all so individual but NICE guidelines only deal with "average"....

Always bear in mind that there is always the exceptional or individual funding for us... if needed...
and other services if needed which my friend has been able to utilise. My friend though is truly individual and exceptional and truly, truly extreme with difficulties beyond normal
difficulties..

I hope this may still bump up for others to read.. and wish you all the best.. xx