Ileostomy and Type 2 Diabetes

[FiLee]

Hello,
Recently diagnosed with Type 2 Diabetes and have an ileostomy. Whilst pre-diabetic I was put on Metformin which did not react well with my stoma so no longer on it and as all other drugs have same side affects, medication looks to be out.
My ileostomy blocks quite regularly so am really struggling to find a suitable diet to reduce my weight and sugar levels Will be looking at previous posts for guidance.
Thanks
Fiona

 

[everydayupsanddowns]

Welcome to the forum @FiLee

Sorry to hear about your diagnosis, it certainly seems to add a degree of extra complication to balance the 2 conditions.

We’ve had a few folks with ileostomies and T2D post over the years, including @dannybgoode

There are some posts/threads here that you can browse through:

Search results for query: Ileostomy

forum.diabetes.org.uk

 

[dannybgoode]

Hello,
Recently diagnosed with Type 2 Diabetes and have an ileostomy. Whilst pre-diabetic I was put on Metformin which did not react well with my stoma so no longer on it and as all other drugs have same side affects, medication looks to be out.
My ileostomy blocks quite regularly so am really struggling to find a suitable diet to reduce my weight and sugar levels Will be looking at previous posts for guidance.
Thanks
Fiona

Hi Fiona

Sorry to hear about your diagnosis and the issues you have with your stoma.

Do you know what your Hba1c is and whether it's rising quickly or slowly?

I've kind have come at this all the opposite way round to most people in that the diabetes team assumed I was Type 1 so I was started on insulin and now they think I'm Type 2 and trying to get me up try Metformin, which as you've discovered often doesn't play nice with stomas! So far I've resisted however I have recently agreed I'll at least try it.

If your BG is rising and needs controlling then, particularly with your stoma and even as a Type 2, insulin is worth requesting

Also, have they ruled out you being Type 1 and what was the reason you needed a stoma (you don't have to say if course but it l if it was something like ulcerative colitis then Type 1 is a possibility).

As for diet there are some good 'soft' foods that are low carbs - cheese, yoghurt, some meats, fish etc.

Also, something like a Nutrabullet can be invaluable as you can blitz raw veg and fruit into nutritious low carb smoothies that are far more pleasant tasting than looking!

Exercise can be really helpful too if you're able to. Does a great job of losing BG and weight.

 

[Proud to be erratic]

Hello @FiLee, glad your getting a quick response from @dannybgoode.

One observation though, he suggests using a Nutribullet: liquidising almost all foods brings about a raise in the glucose content of what is being blitzed. So whether you are accurately carb counting or just wanting to be aware of which foods are higher carb (so you can avoid these foods or consume smaller portions) you just need to be alert to this. Fruit and veg in particular contain a lot of fibre, which is also made from carbohydrates but usually not counted as potential glucose. Normally fibres pass straight through most of us and thus is not digested and converted into glucose. But when blitzed pretty much all fibre ends up in one's digestive system and becomes glucose.

I know you need to choose food which doesn't block your stomach. So blitzing is fairly unavoidable sometimes. I just wanted you to be aware the increased carb consumption could be a bit challenging for maintain a lower BG.

 

[dannybgoode]

liquidising almost all foods brings about a raise in the glucose content of what is being blitzed.

I haven't found the rise in BG to be particularly noticeable when having a smoothie - particularly one which is mainly veg but definitely worth being aware of.

And yes, it's that balance of getting nutritious stuff in which can be a nightmare with a stoma as the alternative is usually beige and much more processed carbs. I would go for a smoothie any day!

And as I say; more stuff like yoghurts and other dairy, fish (although, and apologies if this is TMI, fish can make stoma output *really* smell!), meats etc can be great.

 

[Lucyr]

as all other drugs have same side affects, medication looks to be out

This is absolutely not true, very few diabetes medications have upset stomach as a side effect, the vast majority of them don’t

 

[dannybgoode]

This is absolutely not true, very few diabetes medications have upset stomach as a side effect, the vast majority of them don’t

SGLT2 inhibitors are out too for someone with a stoma due to hydration issues.

Having one does narrow the choice quite a lot as I'm finding out.

DPP4 inhibitors seem to be an option however they do not seem often used. Even my DSNs didn't seem to know a huge amount about them and looking at the guidelines for them being prescribed they seem to only be available to patients of a certain profile (healthy weight and active).

Absorption issues rule out others so it's not straightforward.

 

[everydayupsanddowns]

One observation though, he suggests using a Nutribullet: liquidising almost all foods brings about a raise in the glucose content of what is being blitzed.

I’m not sure it raises the carb content, as much as liquidising foods makes the carbs that are in whatever it is more readily accessible as some of the ‘breaking down’ has already happened. So 20g of carbs as apple juice is likely to hit my system much faster than 20g of carbs as an actual apple. So any possible ‘spike’ in glucose is more likely with more liquid foods.

FWIW I find the same with mashed potato vs other kinds.

 

[FiLee]

This is absolutely not true, very few diabetes medications have upset stomach as a side effect, the vast majority of them don’t

Thanks Lucy, my problem was the diarrohea; which is a side affect for all the medication proposed. Which for a stoma is a huge problem; it turned my output to a water like consistency which meant the adhesive on the bags just lifted it off. Regards Fiona

 

[FiLee]

Hi Fiona

Sorry to hear about your diagnosis and the issues you have with your stoma.

Do you know what your Hba1c is and whether it's rising quickly or slowly?

I've kind have come at this all the opposite way round to most people in that the diabetes team assumed I was Type 1 so I was started on insulin and now they think I'm Type 2 and trying to get me up try Metformin, which as you've discovered often doesn't play nice with stomas! So far I've resisted however I have recently agreed I'll at least try it.

If your BG is rising and needs controlling then, particularly with your stoma and even as a Type 2, insulin is worth requesting

Also, have they ruled out you being Type 1 and what was the reason you needed a stoma (you don't have to say if course but it l if it was something like ulcerative colitis then Type 1 is a possibility).

As for diet there are some good 'soft' foods that are low carbs - cheese, yoghurt, some meats, fish etc.

Also, something like a Nutrabullet can be invaluable as you can blitz raw veg and fruit into nutritious low carb smoothies that are far more pleasant tasting than looking!

Exercise can be really helpful too if you're able to. Does a great job of losing BG and weight.

Hi Danny,

My history is July 1993 temporary ileostomy with j pouch formed and in November a reversal which then failed so had another temporary stoma. June 1994 successful reversal of stoma, then got hit with bad pouchitis. April 1997 permanent stoma formed thenin April 2001 hernia straggled stoma, so had to have another one. All this surgery has meant I have lots of adhesions which can cause blockages which means I have had to cut out a lot of food

Food I cannot eat is raw veggies, salads and fruit. No pulses, nuts or seeds. Any cooked vegetables have to be very well cooked, ie broccolli so soft you can cut it like a hot knife through butter which mean a Nutrabullet is out.

I also have to be careful with exercise to not cause blockages and after my trip to hospital on Monday, I had a doozy of double blockage and I now have a hernia behind my current stoma so not sure where to go with food or exercise at the moment.

I am currently at a loss and stuck with the medical world as they each have their own speciality but I need someone who understands both of my worlds.

Thanks for your reply and I will keep searching for help and will post back with any joy.

Regards
Fiona

 

[FiLee]

Welcome to the forum @FiLee

Sorry to hear about your diagnosis, it certainly seems to add a degree of extra complication to balance the 2 conditions.

We’ve had a few folks with ileostomies and T2D post over the years, including @dannybgoode

There are some posts/threads here that you can browse through:

Search results for query: Ileostomy

forum.diabetes.org.uk

Thanks,

One of my issues is diet Food I cannot eat is raw veggies, salads and fruit. No pulses, nuts or seeds. Any cooked vegetables have to be very well cooked, ie broccolli so soft you can cut it like a hot knife through butter. The dietician was all over the usual this is what you should do for diabetes but could not get handle on my issue of most of what she suggested I could not eat. I need someone who can understand my food dilema and medical issues!

I will keep searching.

Regards
Fiona

 

[Proud to be erratic]

One of my issues is diet Food I cannot eat is raw veggies, salads and fruit. No pulses, nuts or seeds. Any cooked vegetables have to be very well cooked, ie broccolli so soft you can cut it like a hot knife through butter. The dietician was all over the usual this is what you should do for diabetes but could not get handle on my issue of most of what she suggested I could not eat. I need someone who can understand my food dilema and medical issues!

Regards
Fiona

Fiona @FiLee, my sister ended up with an emergency ileostomy several years ago, after her GP failed for a full 12 months to pick-up any of the classic bowel cancer symptoms. Her double whammy was the stoma of course and the chemotherapy - which was almost continuous for most of those years; she is now at an oncology 12 month remission point. But her stoma continues to challenge her.

After the surgery her Hospital in Staffs had negligible stoma support; she found a stoma specialist nurse who retired shortly after and then someone else in Manchester. Meanwhile various blockages made her life pretty miserable with frequent hospitalisations, her most recent was last month. You will wholly understand it all makes her reluctant to eat out, particularly where the menu is unknown to her. She is also still ultra cautious about hygiene practices, anywhere not "at home" and having a decent, clean, surface to put her kit on; not just a narrow window ledge!

Her diet has evolved by trial and learning, plus chats on a website (I'll ask her where that is). I think (hope) you should be able to reconcile your stoma needs and sensible diabetes management. Low carb, NOT no carb, is probably your best start point. You at least know (from hard learning!) what foods to avoid. As @dannybgoode has already asked, what is your HbA1c and how much change is going on with that over the last months (years). Knowing that could help you determine if a few tweaks only or a more fundamental diet and lifestyle review are needed. Although how much more lifestyle change is possible for you is a challenge in itself!

I'm not a big fan of social media, but Fiona have you tried looking for a Facebook group? I reached out to a T3c FB group after I was first diagnosed; that was useful initially, but I did eventually start to feel drowned by the flood of contradictory and dominating comments. I used a different browser uniquely for FB, which allowed me to subsequently step back and reduce the FB interference.

@everydayupsanddowns, yes, I should have commented on the speed of response, as well - which I also agree with. I don't notice speed with mashed potato so much, but I am generous with butter and cream when I make our mash; mash is my first carb source of choice, I found using a value of 15% in my carb count is very reliable for me - some other potato processing (eg roast, chips, chunky chips, chunky triple cooked chips etc) are pretty vague in the carb counting for me. I felt that speed wasn't so relevant to the thread and @FiLee at this moment. As perhaps now an aside, I'm pretty confident that liquidisers also macerate fibres and this allows them to be digested, where they would otherwise pass through and help clean our colons as they go. I'll try to find the written reference source. Before my Whipple's Procedure I had been in the habit of drinking smoothies and do know from shortly after the HPB dietician told me to avoid them because of both confusing BG counting and losing the "bowel benefits". [Almost TMI].

 

[FiLee]

Fiona @FiLee, my sister ended up with an emergency ileostomy several years ago, after her GP failed for a full 12 months to pick-up any of the classic bowel cancer symptoms. Her double whammy was the stoma of course and the chemotherapy - which was almost continuous for most of those years; she is now at an oncology 12 month remission point. But her stoma continues to challenge her.

After the surgery her Hospital in Staffs had negligible stoma support; she found a stoma specialist nurse who retired shortly after and then someone else in Manchester. Meanwhile various blockages made her life pretty miserable with frequent hospitalisations, her most recent was last month. You will wholly understand it all makes her reluctant to eat out, particularly where the menu is unknown to her. She is also still ultra cautious about hygiene practices, anywhere not "at home" and having a decent, clean, surface to put her kit on; not just a narrow window ledge!

Her diet has evolved by trial and learning, plus chats on a website (I'll ask her where that is). I think (hope) you should be able to reconcile your stoma needs and sensible diabetes management. Low carb, NOT no carb, is probably your best start point. You at least know (from hard learning!) what foods to avoid. As @dannybgoode has already asked, what is your HbA1c and how much change is going on with that over the last months (years). Knowing that could help you determine if a few tweaks only or a more fundamental diet and lifestyle review are needed. Although how much more lifestyle change is possible for you is a challenge in itself!

I'm not a big fan of social media, but Fiona have you tried looking for a Facebook group? I reached out to a T3c FB group after I was first diagnosed; that was useful initially, but I did eventually start to feel drowned by the flood of contradictory and dominating comments. I used a different browser uniquely for FB, which allowed me to subsequently step back and reduce the FB interference.

@everydayupsanddowns, yes, I should have commented on the speed of response, as well - which I also agree with. I don't notice speed with mashed potato so much, but I am generous with butter and cream when I make our mash; mash is my first carb source of choice, I found using a value of 15% in my carb count is very reliable for me - some other potato processing (eg roast, chips, chunky chips, chunky triple cooked chips etc) are pretty vague in the carb counting for me. I felt that speed wasn't so relevant to the thread and @FiLee at this moment. As perhaps now an aside, I'm pretty confident that liquidisers also macerate fibres and this allows them to be digested, where they would otherwise pass through and help clean our colons as they go. I'll try to find the written reference source. Before my Whipple's Procedure I had been in the habit of drinking smoothies and do know from shortly after the HPB dietician told me to avoid them because of both confusing BG counting and losing the "bowel benefits". [Almost TMI].

Thanks for your advice; and to answer yourself and @dannybgoode

My HBA1 was 51 in Jan 2024, 49 in June 2024 and 46 in October 2024.

 

[dannybgoode]

Thanks for your advice; and to answer yourself and @dannybgoode

My HBA1 was 51 in Jan 2024, 49 in June 2024 and 46 in October 2024.

The 46 is very encouraging and puts you in the pre-diabetic range so you're doing plenty of things right.

I'm sorry to hear you've had such a torrid time with your stoma as well. I had really severe ulcerative colitis which did it for me - sub-total colectomy in 2012 and then a full proctocolectomy in 2019 so understand the trials and tribulations of living with one well.

Diabetes certainly complicates things a bit and vice versa. Not all oral diabetes drugs have diarrhea as a side effect though - the DPP4 inhibitors seem to be tolerable.

Don't let them try you on SGLT2's though. They work by making you wee a lot and obviously with hydration being an issue anyway for us they're not a good idea. My consultant has noted my file that I'm not to be tried on them.

The letter from the hospital to start me on Metformin has come through though so that will be interesting! The DSN I saw does have other patients with stomas and said some do tolerate it and it simply doesn't work for others. We shall see!

 

[Leadinglights]

You have done very well to manage your blood glucose given your complex condition and realistically where you are now is at a level where maintaining that with what you are doing and being careful about it drifting up should be OK.

 

[Lucyr]

SGLT2 inhibitors are out too for someone with a stoma due to hydration issues.

Having one does narrow the choice quite a lot as I'm finding out.

DPP4 inhibitors seem to be an option however they do not seem often used. Even my DSNs didn't seem to know a huge amount about them and looking at the guidelines for them being prescribed they seem to only be available to patients of a certain profile (healthy weight and active).

Absorption issues rule out others so it's not straightforward.

There’s loads of others not mentioned here. What about gliclazide.

 

[Lucyr]

Thanks Lucy, my problem was the diarrohea; which is a side affect for all the medication proposed.

I appreciate diarrhoea would be a problem with a stoma but not every diabetes medication has diarrhoea as a side effect. Otherwise every t2 on medication would have diarrhoea, but they don’t. They just change to a medication that doesn’t cause diarrhoea.

 

[dannybgoode]

What about gliclazide.

I'm not sure. Neither my consultant nor DSNs have mentioned that as an option and I don't know the reason they haven't.

That said the common side effects according to the NHS website are pretty much the same as Metformin

 

[Lucyr]

That said the common side effects according to the NHS website are pretty much the same as Metformin

It might be listed but I’ve been diabetic using forums for 16 years and never once have I heard of anyone stopping gliclazide due to diarrhoea

 

[dannybgoode]

Otherwise every t2 on medication would have diarrhoea, but they don’t. They just change to a medication that doesn’t cause diarrhoea.

I would also note that people with a stoma generally already have a pretty loose output.

A huge amount of moisture is absorbed by the bowel and of course we don't have one so things are already borderline. It's this absorption of moisture that turns what we have as output into nice firm poo for most folk.

What we consider normal output most folk would already class as diarrhoea if it were coming out of them. It therefore doesn't take much to tip us into full blown issues.

Even off the shelf diarrhoea, if not controlled quickly, can be fatal to someone with a stoma. It really is something we look to avoid.

Note also that a lot of people with stomas have them because they were very seriously ill with things like ulcerative colitis, Crohn's and other pretty horrid illnesses and the mere thought of potentially have diarrhoea can be traumatic.

This is the position I find myself in. I'm frankly terrified of the prospect. When you've nearly died from something like that the thought of knowingly and willingly putting yourself at risk of it is quite hard to deal with.