# Ileostomy & Diabetes type 2



## Linda Sharrett (Sep 15, 2018)

Hello All, I am a Newbie. Hope you can please help me.
I have an Ileostomy & have recently been diagnosed with Type 2, as a result of following the "High Output Diet for Ileostomy" which is mainly the unhealthy options of White bread, White Pasta, Potato, Crisps, Peanut butter, Jelly Babies & Marshmallows. 
This is to help slow down the Digestion, as within an hour of eating it is in the "Bag" therefore Nutrients are not absorbed.
I was told in hospital after my operation to increase my Salt intake & eat Salted Butter. I also have an Allergy to the Drug to slow down this process. I have to find a way to manage this with Diet ?  I am having great difficulty finding the suitable foods to suit each problem.
I have spoken to my Stoma Nurse, Colorectal Surgeon, G.P & Diabetes Nurse & all
of them are at a loss, not knowing another patient to compare me with.  
Is this so rare? I can't be the only one. Please can you find a suitable diet for me to follow ?


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## Maire (Sep 15, 2018)

Hello Linda, I’m in exactly the same boat as you....dreadful trouble with high blood sugar readings I just haven’t be stable since my Ileostomy surgery. But a week ago I was started on a weekly injection called Trulicity I have just had my 2nd dose but it hasn’t as yet been able to stabilise my blood sugars and also I feel really sick all the time. It’s been incredibly hard to get any answers from either the diabetes team or my colorectal team!!


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## Linda Sharrett (Sep 15, 2018)

Hello Maire, we suffer in silence ! My Surgeon has always been under the impression that my Diabetes was the "Lesser of 2 Evils" & it was more important to concentrate on my diet to suit my Stoma output & try to stop my skin from burning. I ended up in hospital with an infection from it  & 5 days on a drip & NG tube. He says one thing & my Diabetic nurse at my surgery says another. She has not had any Patients with these two conflicting condition.


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## mikeyB (Sep 15, 2018)

Hi Linda, welcome to the forum.

I just avoided your situation after a developed Ulcerative Colitis affecting the whole colon, weeks after developing diabetes (which had been erroneously diagnosed as T2.). Great way of controlling BG, and losing weight. Fortunately I retained my colon and was almost immediately confirmed T1.

You need to be seen by a diabetes specialist. You can’t change your diet, which is almost a unique situation. The only solution, in my opinion, is use insulin to help the body along - your pancreas is obviously not coping with the amount of insulin it has to pour out for the high carb diet.

Trulicity is locking the stable door after the horse has bolted. 

So, it seems obvious that the problem is not enough insulin, so stick some more in to help the pancreas out. 

That’s not a decision that can be made by your diabetes nurse, it needs to be done by a specialist- who like as not won’t have seen this problem before, but that’s the level that discussion should take place. 

Hope this helps. Let us know how you get on. 

By the way, your surgeon is wrong. Your diabetes isn’t the lesser of two evils, it has to be controlled. Typical surgeon


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## Linda Sharrett (Sep 15, 2018)

mikeyB said:


> Hi Linda, welcome to the forum.
> 
> I just avoided your situation after a developed Ulcerative Colitis affecting the whole colon, weeks after developing diabetes (which had been erroneously diagnosed as T2.). Great way of controlling BG, and losing weight. Fortunately I retained my colon and was almost immediately confirmed T1.
> 
> ...


Thanks Mike i will mention this to my nurse and ask to be refered. Nice to know I'm not alone. My Hba1c was 131. Early this year. Now it's 14.9 mmol. Checked this afternoon. After being on Metformin for about 6mths.


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## Maire (Sep 15, 2018)

Linda Sharrett said:


> Hello Maire, we suffer in silence ! My Surgeon has always been under the impression that my Diabetes was the "Lesser of 2 Evils" & it was more important to concentrate on my diet to suit my Stoma output & try to stop my skin from burning. I ended up in hospital with an infection from it  & 5 days on a drip & NG tube. He says one thing & my Diabetic nurse at my surgery says another. She has not had any Patients with these two conflicting condition.


OMG Linda, poor you, that’s terrible....it’s so complicated!! Everything is conflicting.....as ostomates we have to be careful what we eat....even the dietician couldn’t give me any answers.


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## mikeyB (Sep 16, 2018)

Don’t worry, Maire, somebody will have the answers, but that somebody isn’t your diabetes nurse or GP.

One of the problems is that you have lost your colonic biome - the bacteria that control many things in the body, including supplying almost all of your Vit K. There are other wide ranging effects. Its a vital complex system, and it’s been removed. 

For that reason,  I don’t think you fit the Type 2 label or treatment.

Because it is so complex, it’s only a diabetes specialist who might be able to work something out, and an appointment is something you need to push for.


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## Linda Sharrett (Sep 17, 2018)

mikeyB said:


> Don’t worry, Maire, somebody will have the answers, but that somebody isn’t your diabetes nurse or GP.
> 
> One of the problems is that you have lost your colonic biome - the bacteria that control many things in the body, including supplying almost all of your Vit K. There are other wide ranging effects. Its a vital complex system, and it’s been removed.
> 
> ...



Thanks for the advice Mike. I am making appointment to see my Diabetes Nurse asap & hope she can refer me to a Specialist to try to sort this out, once again thanks.


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## HelenJ (Sep 24, 2020)

Linda Sharrett said:


> Thanks for the advice Mike. I am making appointment to see my Diabetes Nurse asap & hope she can refer me to a Specialist to try to sort this out, once again thanks.





Linda Sharrett said:


> Hello All, I am a Newbie. Hope you can please help me.
> I have an Ileostomy & have recently been diagnosed with Type 2, as a result of following the "High Output Diet for Ileostomy" which is mainly the unhealthy options of White bread, White Pasta, Potato, Crisps, Peanut butter, Jelly Babies & Marshmallows.
> This is to help slow down the Digestion, as within an hour of eating it is in the "Bag" therefore Nutrients are not absorbed.
> I was told in hospital after my operation to increase my Salt intake & eat Salted Butter. I also have an Allergy to the Drug to slow down this process. I have to find a way to manage this with Diet ?  I am having great difficulty finding the suitable foods to suit each problem.
> ...


hi. Did you manage to sort this out as I’m in the same position ?


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## everydayupsanddowns (Sep 27, 2020)

Hello @HelenJ 

I’m afraid Linda hasn‘t visited the forum for 2 years


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## everydayupsanddowns (Sep 27, 2020)

I’m afraid I don't know much about how an ileostomy and diabetes might interact with diabetes.

I’m not sure if it will help, but I found this page








						Ileostomy - Complications
					

As with any surgery, complications can develop during or soon after an ileostomy operation. Discuss the risks with your surgeon before the procedure.




					www.nhs.uk


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## Ebathome (Oct 4, 2020)

HelenJ said:


> hi. Did you manage to sort this out as I’m in the same position ?


Hello my mother is currently in hospital and will now be dependent on insulin. She has had an ileostomy for 57 years so I totally understand the need for carbs to bulk. I am just wandering if it is a diabetic nurse who can help or a nutritionist? Would be keen to know how you get on...good luck


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## HelenJ (Oct 4, 2020)

Ebathome said:


> Hello my mother is currently in hospital and will now be dependent on insulin. She has had an ileostomy for 57 years so I totally understand the need for carbs to bulk. I am just wandering if it is a diabetic nurse who can help or a nutritionist? Would be keen to know how you get on...good luck


I have an appt with a consultant at the end of the month so I will let you know what happens. They have specialist diabetic nurses there so hopefully will come up with something relating to the diet. Hope your Mum is ok


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## iburry67 (Dec 6, 2020)

HelenJ said:


> hi. Did you manage to sort this out as I’m in the same position ?


I have same issue just add COVID to make it more interesting


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## iburry67 (Dec 6, 2020)

HelenJ said:


> I have an appt with a consultant at the end of the month so I will let you know what happens. They have specialist diabetic nurses there so hopefully will come up with something relating to the diet. Hope your Mum is ok


Don’t expect a resolution. I trust my GP and all they could do was up the met Forman from 1000mg per day to 2000mg per day. I hope I’m wrong and would love to know if you found another solution which is not still a health issue.


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## grovesy (Dec 6, 2020)

iburry67 said:


> Don’t expect a resolution. I trust my GP and all they could do was up the met Forman from 1000mg per day to 2000mg per day. I hope I’m wrong and would love to know if you found another solution which is not still a health issue.


The poster has not been seen since they last posted. So don't be suprised if you get no reply.


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## trophywench (Dec 6, 2020)

A General Practitioner is not even supposed to be an expert in anything to do with health - and most of them, being intelligent generally, never claim to be!  Their expertise is in knowing 'enough' about an awful lot of bodily functions.

Diabetes is itself a specialist function, of the specialist Endocrinology function.  Yes, that narrow!  So to expect a GP to know how to react and deal with complex health problems is to expect too much.


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## iburry67 (Dec 6, 2020)

I’ve dealt with dietician, who specialize in the area of diabetes. They are all of the same mind. Anyway you have taught me something tonight and I will push harder to locate a Endocrinology function specialist - I’m trying to find answers to the whole horrible experience I am have with the stoma bag.


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## Lyn.p (Dec 11, 2020)

Linda Sharrett said:


> Hello All, I am a Newbie. Hope you can please help me.
> I have an Ileostomy & have recently been diagnosed with Type 2, as a result of following the "High Output Diet for Ileostomy" which is mainly the unhealthy options of White bread, White Pasta, Potato, Crisps, Peanut butter, Jelly Babies & Marshmallows.
> This is to help slow down the Digestion, as within an hour of eating it is in the "Bag" therefore Nutrients are not absorbed.
> I was told in hospital after my operation to increase my Salt intake & eat Salted Butter. I also have an Allergy to the Drug to slow down this process. I have to find a way to manage this with Diet ?  I am having great difficulty finding the suitable foods to suit each problem.
> ...


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## Lyn.p (Dec 11, 2020)

Hi just found out  and reading your comments is like reading mine word for word  .got see nurse on Monday about how were going to treat it .now I have no faith after a hospital blunder ending up with a bag  2 years next March  .thanks for the add  need to get my head around how page works because see this is old post  .x


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## grovesy (Dec 11, 2020)

Lyn.p said:


> Hi just found out  and reading your comments is like reading mine word for word  .got see nurse on Monday about how were going to treat it .now I have no faith after a hospital blunder ending up with a bag  2 years next March  .thanks for the add  need to get my head around how page works because see this is old post  .x


It looks like they have not posted since 2018.


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## Degurosa (May 9, 2021)

Lyn.p said:


> Hi just found out  and reading your comments is like reading mine word for word  .got see nurse on Monday about how were going to treat it .now I have no faith after a hospital blunder ending up with a bag  2 years next March  .thanks for the add  need to get my head around how page works because see this is old post  .x


Hi. Ive just been diagnosed with type 2 and also have a high output Ileostomy. It was decided I should try Trulicity rather than metformin as they didn’t think I’d cope with the side effects of the tablets. As far as I can make out, all the treatments have nasty side effects and it seems to be a case of finding the one that is least evil. I only had my first injection on Friday, and since then have had a completely watery output and slight nausea. I don’t really feel hungry so haven’t been able to bulk up on carbs, but I’m hoping that as I get used to the drug things will improve. My plan is to continue with the extra carbs, cut down on fats, and hope things like baked apple or baked beans will help thicken things up. Basically, I’ll continue to follow the Ileostomy diet rather than the diabetic one,  but I’ll keep it as healthy as possible. I don’t seem to have anyone to ask about this, so I’m just going to go ahead with it.
How are you getting on?


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## Lyn.p (May 9, 2021)

Degurosa said:


> Hi. Ive just been diagnosed with type 2 and also have a high output Ileostomy. It was decided I should try Trulicity rather than metformin as they didn’t think I’d cope with the side effects of the tablets. As far as I can make out, all the treatments have nasty side effects and it seems to be a case of finding the one that is least evil. I only had my first injection on Friday, and since then have had a completely watery output and slight nausea. I don’t really feel hungry so haven’t been able to bulk up on carbs, but I’m hoping that as I get used to the drug things will improve. My plan is to continue with the extra carbs, cut down on fats, and hope things like baked apple or baked beans will help thicken things up. Basically, I’ll continue to follow the Ileostomy diet rather than the diabetic one,  but I’ll keep it as healthy as possible. I don’t seem to have anyone to ask about this, so I’m just going to go ahead with it.
> How are you getting on?


Thanks for reply I said no to metafome  so trying other roots  oddly my bag has gone thick and iam have to drink fruit juice and  yeah full of sugar  .lot I cont eat veg and fruit wise  .got call tomorrow with sugar nurse  I have had too up my insulin up 28 .and it's as high sometimes as without  .plus jumped on scales today omg  I have to get a right diet  as just at a loss 
Looked into noom but not very clear how it works .
Thinking you pay for someone to chat dayly  .plus I suffer from fibromyalgia ME  and  depression my mind is going over and over. Really need help  .hopefully you get on ok  please let me know if you can find the right diet  .thanks lyn


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## Lyn.p (May 9, 2021)

Degurosa said:


> Hi. Ive just been diagnosed with type 2 and also have a high output Ileostomy. It was decided I should try Trulicity rather than metformin as they didn’t think I’d cope with the side effects of the tablets. As far as I can make out, all the treatments have nasty side effects and it seems to be a case of finding the one that is least evil. I only had my first injection on Friday, and since then have had a completely watery output and slight nausea. I don’t really feel hungry so haven’t been able to bulk up on carbs, but I’m hoping that as I get used to the drug things will improve. My plan is to continue with the extra carbs, cut down on fats, and hope things like baked apple or baked beans will help thicken things up. Basically, I’ll continue to follow the Ileostomy diet rather than the diabetic one,  but I’ll keep it as healthy as possible. I don’t seem to have anyone to ask about this, so I’m just going to go ahead with it.
> How are you getting on?


Ps green banana and smooth peanut butter helps thicken your output  .


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## MortSA (Jun 4, 2021)

A bit of a relief to find this thread, as like other people who have replied, my GP and diabetic nurse are at a bit of a loss about diet advice when it comes to being diabetic and having an ileostomy. There was a tentative suggestion of a low carb diet, like the keto diet, but I've seen other people commenting that it messes with their discharge something fierce. So if anyone has any advice I'd be grateful to hear about.


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## Juney (Jun 14, 2021)

MortSA said:


> A bit of a relief to find this thread, as like other people who have replied, my GP and diabetic nurse are at a bit of a loss about diet advice when it comes to being diabetic and having an ileostomy. There was a tentative suggestion of a low carb diet, like the keto diet, but I've seen other people commenting that it messes with their discharge something fierce. So if anyone has any advice I'd be grateful to hear about.


Hi I'm a newbie with an ileostomy so I hear what youre saying. There doesnt seem much info with our problem so maybe we can share what we find to help each other. It's all a bit scary right now isnt it.


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## MortSA (Jun 18, 2021)

My diabetic nurse managed to motivate for me to get moved onto the Libre Freestyle monitor and that's done wonders for keeping on top of things. I'm busy experimenting with my water intake and trying to find a sweet spot between messing with my output and flushing out the sugar.


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