Type 2 but I don’t eat.

[Penguin2024]

Hi Everyone

I have various illnesses & mobility problems one main one is Crohn’s disease which, sadly I’ve ended up with an ileostomy (stoma). Due to many operations i only have a short bowel. This limits me what I can & cannot eat, if i eat. I have a ‘build-up’ drink for vitamins etc.. and due to daily dehydration problems I usually take 9 packets of Dioralyte a day. After years of having Dioralyte in water this has affected my organs and now I have Type 2 Diabetes . There is a sugar free Dioralyte but it’s made from grounded rice which produces alcohol this will affect my medication. I have a short bowel and drinking a simple bottle of water is pointless because I cannot absorb fluid the same way as normal people.

I was diagnosed 5 months ago with diabetes type 2, I went to my doctor because I was getting very tired, low energy etc.. had a blood test and GP TEXT me to say ‘you have type 2 diabetes’ I was devastated as I read the text and annoyed that my GP couldn’t pick up the phone and talk to me. I learnt type 2 can be controlled by diet only but I don’t eat, if I’m on my steroids I can have soup with bits of chicken or soft potato. My blood sugar levels are up and down, I haven’t seen diabetic nurse since I was diagnosed.

 

[mashedupmatt]

Hi @Penguin2024 and welcome to the forum - sorry to hear about the way you were sent a text message with a diagnosis - that is pretty poor IMO, and you should see a Diabetic Specialist Nurse no question - you mentioned steroids - taking them will also affect your blood sugar - have a look at this link from Diabetes UK which will provide you with more info...

Steroid-induced diabetes

Steroids can cause high blood glucose (sugar) levels. That’s why some people who take steroids go on to develop diabetes. This is known as steroid-induced diabetes, and is more common in people who are at higher risk of type 2 diabetes. What are steroids? Steroids are also known as...

www.diabetes.org.uk

 

[gail2]

hi @Penguin2024 welcome to the forum
you need to see a DNS(ask gp to be referred to one) and maybe she will be able to point you to more specialist help I agree with @mashedupmatt telling by text was well out of order.
good luck in your journey and use the forum as much or little as you like They are a great bunch of peeps here No question to small/large or to silly
gail

 

[Leadinglights]

Welcome to the forum, what a blow to have something else added to your other issues but you really do need the help of a specialist diabetic nurse but depending on how far into the diabetic zone you are, it may be something perfectly manageable with some small tweaks to the diet you are able to have with your condition.
Were you told what your HbA1C was as that will give a good idea of how much needs to be done.
I believe there have been people on the forum who have had an ileostomy, but quite how recently they have been seen I not sure, if you use the search you may come across some posts.
You could also speak to your gastro consultant for referral to the dietician who may be able to help.

 

[Penguin2024]

Welcome to the forum, what a blow to have something else added to your other issues but you really do need the help of a specialist diabetic nurse but depending on how far into the diabetic zone you are, it may be something perfectly manageable with some small tweaks to the diet you are able to have with your condition.
Were you told what your HbA1C was as that will give a good idea of how much needs to be done.
I believe there have been people on the forum who have had an ileostomy, but quite how recently they have been seen I not sure, if you use the search you may come across some posts.
You could also speak to your gastro consultant for referral to the dietician who may be able to help.

Hi Leadinglights
I don’t know my HbA1C (had to look that up ) No one has mentioned any levels but I was told I may need medication in a couple of months.

 

[Penguin2024]

Hi @Penguin2024 and welcome to the forum - sorry to hear about the way you were sent a text message with a diagnosis - that is pretty poor IMO, and you should see a Diabetic Specialist Nurse no question - you mentioned steroids - taking them will also affect your blood sugar - have a look at this link from Diabetes UK which will provide you with more info...

Steroid-induced diabetes

Steroids can cause high blood glucose (sugar) levels. That’s why some people who take steroids go on to develop diabetes. This is known as steroid-induced diabetes, and is more common in people who are at higher risk of type 2 diabetes. What are steroids? Steroids are also known as...

www.diabetes.org.uk

I’ve been on and off steroids since I was 5. I never knew diabetes and steroids were linked, GP said. ‘ cut down on sweet stuff’ I hate locum drs they don’t know your history.

 

[Leadinglights]

Hi Leadinglights
I don’t know my HbA1C (had to look that up ) No one has mentioned any levels but I was told I may need medication in a couple of months.

You would have had that test to have given you the diagnosis of diabetes where the threshold is 48mmol/mol. People who are only just over that maybe up to about 60mmol/mol though that varies depending other conditions and age and your GP will be given an opportunity to make some dietary changes before medication. The first thing would normally be metformin but I suspect that would be unsuitable in your case as might some of the other oral medication so it maybe that they may be considering insulin but it really does depend on what your HbA1C is, you should ask as soon as you can so you know where you are as that really will determine what course of action you need to take, at the moment you are in the dark.

 

[everydayupsanddowns]

Sorry to hear about your diagnosis @Penguin2024

And the way the communication has been handled.

It does sound like your diagnosis may have been complicated by your ongoing need to use steroids, and the dietary / eating restrictions you have been living with

Welcome to the forum!

 

[Docb]

Also sorry to hear about the problems you are having.

My thought for you is that you give your GP surgery a jab and ask them for your HbA1c result. That will tell you how far up the diabetes hill you are.

I am guessing with the Crohn's and now the stoma that you are used to working out for yourself how to balance the options you have available to you to get a compromise that suits you. You might look at the diabetes as something else you have to build into that balancing act. Knowing your HbA1c will help with that. If it is around, or even a bit above, the diabetes diagnosis limit you might take the view that that would be acceptable if any attempts to bring it down would make the Crohn's/Stoma harder to cope with. If it is well above the diagnosis limit, with the risk of doing long term damage then you might have to think again.

As I have said before many times on the forum, I take the view that it is often more about getting the balance right rather than rushing off in some particular direction. For me it is especially so when you are dealing with multiple conditions.

 

[dannybgoode]

Sorry to hear about your troubles here.

I'm also an ileostomate (ulcerative colitis did it for me) and very recent diagnosed as diabetic (6th Dec).

Have you had any tests to confirm that it is definitely Type 2? As you have had an autoimmune condition already then you are at a higher risk of others so Type 1 is a possibility of it hadn't been ruled out.

My experience with the GP was similar. Got a phone call to say my Hba1c (following a routine blood test) was 121 and I was type 2 and would be starting on Metformin.

I pushed back as I didn't fancy the possible side effects with a stoma to manage and the GP reluctantly referred me to the diabetes clinic.

They immediately suspected Type 1 and are currently running the c-peptide and antibody tests. I may get the results tomorrow.

If it is Type 1 then management is usually very different to Type 2 as it's insulin controlled rather than diet controlled. Even Type 2 can be insulin controlled and I'm possibly going to push for that as long term oral meds with a stoma are not ideal for me.

I would push for a referral to your local diabetes clinic and ask to speak to a specialist as managing diabetes with the added complication of a stoma is, imo, outside of the experience and knowledge of most GPs.

 

[Docb]

If I can add to @dannybgoode 's very wise post. My brother had an ileostomy and he found his GP completely useless when it came to its management. What he did find was that in his area there was a stoma clinic which he had a very high opinion of. Not only did it give him access to people who knew what they were talking about, it also gave him access to other services which made his stoma management more comfortable.

Might be worth enquiring if something similar exists in your area - if you have not already done so.

 

[Winifreds child]

Hi Everyone

I have various illnesses & mobility problems one main one is Crohn’s disease which, sadly I’ve ended up with an ileostomy (stoma). Due to many operations i only have a short bowel. This limits me what I can & cannot eat, if i eat. I have a ‘build-up’ drink for vitamins etc.. and due to daily dehydration problems I usually take 9 packets of Dioralyte a day. After years of having Dioralyte in water this has affected my organs and now I have Type 2 Diabetes . There is a sugar free Dioralyte but it’s made from grounded rice which produces alcohol this will affect my medication. I have a short bowel and drinking a simple bottle of water is pointless because I cannot absorb fluid the same way as normal people.

I was diagnosed 5 months ago with diabetes type 2, I went to my doctor because I was getting very tired, low energy etc.. had a blood test and GP TEXT me to say ‘you have type 2 diabetes’ I was devastated as I read the text and annoyed that my GP couldn’t pick up the phone and talk to me. I learnt type 2 can be controlled by diet only but I don’t eat, if I’m on my steroids I can have soup with bits of chicken or soft potato. My blood sugar levels are up and down, I haven’t seen diabetic nurse since I was diagnosed.

Although I am newly diagnosed with t2 so not really in a position to offer much advice to you my sister has suffered from crohns for the last 45 years and had many low points with that…I can imagine how devastating being diagnosed t2 must be for you I would like to think in your position you should be offered extra support but I say should…it is a great shame your gp hasn’t picked up the phone to you …I know you will be feeling down but I urge you to contact your surgery and ask for help because I think the crohns could make it complex that requires expertise and if you don’t feel up to that do you have someone who could do that for you and at least set up something with the nurse there will be a way forward and things will get better for you but I think you need some kind of consultation a bespoke plan that takes into account your crohns …mean while you are in a good place on here people are so helpful and knowledgeable I hope someone with crohns may get in touch with suggestions for you …you are not alone with this keep communicating it helps