Diabetes and Other Conditions (Ulcerative Colitis/J-Pouch)-Diabetes Medicine Issues

[ChrisKH]

Hi All

First post, recently diagnosed six weeks ago with type 2. I had no symptoms and I have no idea how long I have had it, but I tested my blood glucose expecting 5-6 mmol but had 15.1! HbA1C test initially was 72. I probably developed type 2 diabetes for a number of reasons; my father had it in later life, I took steroids for an extended period in my 30s (Ulcerative Colitis), I had my large bowel removed 22 years ago and I have since relied heavily on carbs and sugars to make up for the high fibre/high residue I could not now have in my diet (or I could if I wanted, but I would suffer the cut of a thousand toilet visits).

My doctors have not gone down the diet/exercise route first, because of the lack of knowledge on how long I have had the condition. And the fact I do not have a weight problem and I usually exercise regularly. I still need to eat a modified diet with low carbs, no added sugars but with the added issue of a low(ish) fibre requirement as well, and I'm struggling with that. That said, the first two weeks with a reduced carb/no sugar diet without any metformin or statins were the best I have felt physically for a long time.

So I'm taking metformin and a statin for starters, but one or other of these pills (or both) gives me chronic watery bowel movements, made worse with a certain degree of leakage/incontinence, especially at night. I started with regular metformin and switched to slow release recently, but the side effects are the same. I worked up to 3 x 500mg tablets a day and it was quite effective at reducing my blood glucose level and with exercise I can get below 6 mmol. Currently on 2 x 500mg prolonged release metformin and it is not having the same desired effect on blood glucose and the side-effects continue. I have cut the statins for a week to see what effect this has on my night time emissions and I may experiment with taking this at different times of the day when I re-start, as this could be the issue, as I was taking it at night.

My question is, what other drugs are there out there, that might be better? The doctors have already said they don't think metformin will be enough in the long term, because my existing physical and dietary conditions are preventing me adjusting my diet drastically and they will need to look at other (stronger?) drug alternatives. I'm prepared to exercise substantially and usually do in the evenings and weekends; I am a cyclist and I don't usually sit still, when at home. I have my son's gym, stationary bike and free weights. Work is sedentary though.

Any thoughts or contributions appreciated. I am finding because of the combination of conditions I have, the doctors/nurses are struggling to keep up in terms of effective treatment and recommendations for diet, although I agree it is very early days. I would like to be prepared for a June meeting when I have my second HbA1C test and we discuss my drug regimen and the problems I have with the existing one not working well. Thanks!

 

[Antje77]

Hi @ChrisKH , welcome to the forum.

My question is, what other drugs are there out there, that might be better?

There are many different diabetes drugs that can be tried, all with their own side effects, so it may well be there is one that would suit you much better.
There are many people who don't do well on metformin, slow release or not, and there are many people who can take it without problem.

I still need to eat a modified diet with low carbs, no added sugars but with the added issue of a low(ish) fibre requirement as well, and I'm struggling with that.

Not sure I understand correctly, do you need to take the fibre because of your bowel issues or do the bowel issues make you struggle to eat fibre?

That said, the first two weeks with a reduced carb/no sugar diet without any metformin or statins were the best I have felt physically for a long time.

We have members who started out with a hba1c higher than yours who manage well on a low carb diet, you might be one of those for who this is enough, provided it's possible with the bowel problems.

Do you have a glucose meter?
It can be very helpful in finding the foods that work and don't work with your diabetes.

Good luck!

 

[h884]

Hi ChrisKH

Sorry to hear about the issues you are experiencing. I also have colitis and was on metformin for short period. I also was unable to tolerate it. I was subsequently discovered to have Type 1 so am now on insulin.

When you have various health issues it can be very difficult to find treatments that help and do not make things worse. I have various autoimmune conditions including Type 1 Diabetes, arthritis, colitis. For me currently it is my colitis and arthritis that are causing me the most issues.

In light of the issues you are experiencing it might be worth with having a conversation with someone before your June appointment. That is quite a long to time to have these problems.

Theres are many other drugs as the other posters have mentioned which may help you.

I hope things improves for you. If you have questions please feel free to ask.

 

[ChrisKH]

Thanks both. I should correct the English in my post; I have to avoid fibre (a low volume intake requirement, over higher) primarily to reduce the number of toilet visits a day. I can eat a reasonable amount of certain fibres, especially soluble fibres and I don't suffer from blockages or anything, just that more fibre in any real quantity, that would be acceptable to the man in the street turns my innards into the gastro equivalent of the Cresta Run. So transit time and frequency increases with the amount of fibre eaten.

I have a glucose meter, but I'm going to try something like the Freestyle Libre temporarily, until I can recognise what my limitations are. I have a diabetes course in May but other than that, the diabetic nurse visits are quarterly. I will be speaking to the doctor before June, to resolve the Metformin/statins issue. It does seem, having spoken to other diabetics that treatment can be a bit of a lottery and it depends where you are and what surgery you are under. Emphasis is given to pre-diabetics locally (a bit like a Mormon targeting someone for conversion) as they are easier to save. Thereafter, it's drug therapy, probably because it is cheaper to use drugs on the lost souls. But it is good to hear that people with worse hba1c results have managed well on a low carb diet, in which case I shall go back to basics.

 

[Antje77]

I have to avoid fibre (a low volume intake requirement, over higher) primarily to reduce the number of toilet visits a day. I can eat a reasonable amount of certain fibres, especially soluble fibres and I don't suffer from blockages or anything, just that more fibre in any real quantity, that would be acceptable to the man in the street turns my innards into the gastro equivalent of the Cresta Run. So transit time and frequency increases with the amount of fibre eaten.

That sounds perfectly compatible with diabetes, you don't need to eat fibre for diabetes at all. We even have some members doing well on an almost fully carnivore diet, no fibre at all (not my thing, I like my veggies).

What kind of things can you eat? That might be an easier place to start than with what you can't eat.

I have a glucose meter, but I'm going to try something like the Freestyle Libre temporarily

You can order the first one for free!
It's a very useful tool, but be aware of its limitations.
It's very good for spotting trends, but not completely reliable on absolute numbers, you might want to do a couple of fingerpricks to verify. Many people find it's often more off on the first day.

You might like to have a read of this, written by one of our members: https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html
There is also this thread where we share what we eat with some chat on the side. Not sure you'll like it because of your food limitations, but it might give you an idea on how some of us handle low carb in a day to day way. https://www.diabetes.co.uk/forum/threads/what-have-you-eaten-today-low-carb-forum.75781/page-2758

 

[ChrisKH]

That sounds perfectly compatible with diabetes, you don't need to eat fibre for diabetes at all. We even have some members doing well on an almost fully carnivore diet, no fibre at all (not my thing, I like my veggies).

What kind of things can you eat? That might be an easier place to start than with what you can't eat.

Thanks, that's really useful. My dietary needs before diabetes were:-
Can't eat or avoid:
Whole or halved nuts, nut pieces, small seeds (like on a burger bun or baked roll) of any kind. Nuts cause blockages.
Edamame beans (Devil's food!)
Spiky lettuce (Kale, Arugula)
Brown rice
Anything small and highly fibrous
Anything that is a water or seed carrier (water melon, I love, but can eat maybe a few pieces)

Eat in moderation (Usually only one-two servings per meal)
Fruit with skin taken off, or stewed if possible (Apples, tomatoes, Pears, Plums, Peaches, bananas)
All berries
Flat(tish) lettuce - The more curves or bends the greater the greater the amount of water they hold, which makes them worse.
All vegetables, especially cooked well and in soups and stews
Beans & Pulses (best cooked; soft as possible - kidney beans, butter beans, split peas)
Wholemeal and granary breads
Fries, UK chips, battered fried fish
Olive oil, olives
Taramasalata
Tomato puree, sauce or passata
Spices
Jelly babies, marshmallows (recommended as they contain gelatin and bind in the gut)
Smooth peanut butter or crushed nuts (a.g. almonds)
New potatoes, jacket potatoes.

Eat as much as I like (fats notwithstanding):
All dairy: cheese, yoghurt, cream
All eggs, fish and meat
White processed bread and rolls
White rice of any kind
Plain cooked potatoes (but not roasted in fat or oil, not surprisingly acts like grease to a wheel)
Pasta
Sugars

Combination foods, can be worse (Pizza is out for example, or highly spiced things without something else added to slow down transit) but some do work (low spiced meat curry and rice combinations, e.g. chilli because the meat & rice is low transit). Other combinations (meaty, vegetable soup) are great and are like a salve to the bowel. Fajitas almost work, depending what else you have eaten that day or you just take the punishment for the sake of a meal.


So the issue now is finding the variety of meals from an even smaller group of foods, some of which go on the banned or small serving, or occasional list. I have for the last 20 years used pasta, bread and rice to fix the hole left by fewer fruit and vegetables, for example.

Add to that, my body can be deficient in Vitamin D despite eating an enormous amount of healthy fresh foods and I'm chronically Iron deficient. Usually winter months are worse as I work indoors, the same for everyone who does, but health-threatening for me - practically no iron in blood and horrendous Vit D levels when it was discovered. In the garden for six months of the year now, when the problem disappears. High dose supplements (D3, Iron and now Chromium) are therefore essential in winter and I stay outside weather permitting. Lunches during the week are particularly difficult 3 days in 5 as I work in the City and sandwiches and rolls are largely out. I'm having to revert to healthy sandwiches (1 round chicken, avocado, granary or cheese salad) plus a quality scotch egg, until I can work out what else to eat. I have cut bread intake, but it's impossible to do it entirely at the moment, unless I can cook for myself from scratch.

On the plus side, I don't have to worry about losing weight or putting additional roughage in my diet! On the minus side, if you remove any amount of bowel (let alone all of it) your body doesn't absorb all the water in food, and electrolyte and vitamin take up is much lower. What's left behind, in terms of surgically modified small intestine, does a great job a lot of the time but it has its limitations. Hydration can be an issue. Hence the problems I'm having now with statins and metformin, which appear to increase the water/fat content in the 'outflow'. So I need to find drug alternatives that don't necessarily work via the gut, or don't have the same side effects. Early days in this area, but I would rather change my diet than add medicine (of which I already take too many).

 

[Antje77]

So the issue now is finding the variety of meals from an even smaller group of foods, some of which go on the banned or small serving, or occasional list.

I think this is exactly what you're looking at, especially because you'd like to avoid medication.

I see some nice possibilities in your list, but that doesn't take away having to think twice on breads, potatoes, pasta and rice, which feature heavily in your meals and which won't be nice to give up on or reduce, especially because your diet is so limited already.

Thoughts on the 'in moderation' list:
Tomatoes, olive oil, olives, tomato puree, sauce or passata, smooth peanut butter or crushed nuts (a.g. almonds): all very useful to make meals more interesting without messing with your diabetes much.
Jelly babies, marshmallows (recommended as they contain gelatin and bind in the gut): if you need them for the gelatin, there are other ways to add that to your diet. Sugar free jelly, or even a luxurious creamy bavarois, sweetened with sweeteners or by using berries are both made with gelatin.
Beans & Pulses (best cooked; soft as possible - kidney beans, butter beans, split peas): pulses are a bit odd, some of us spike on them, others don't, or not nearly as much as you'd expect from the carb count.

On the unlimited list:
All dairy: cheese, yoghurt, cream, all eggs, fish and meat: Those are your best friends!
Cheese and meats are perfect snacks, and fill you nicely up if added to meals.
What about butter? You said olive oil in moderation, but if you do well on butter, it adds flavour to almost anything and is a great way of filling up on less food in volume.
The same goes for cream, a meaty stew or soup with a little vegetables is twice as filling with cream added.
Eggs are very versatile as well. A couple of hard boiled eggs to take on the road is the easiest meal to bring with you. But a tasty cheesy omelette with bacon can also be eaten cold and taken with you to have instead of a sandwich.

Can you eat very soft boiled cauliflower? If so, it makes a great alternative for mashed potatoes: Boil until soft, drain and leave to lose some more moisture from steam. Add, a generous knob of butter and cream or cream cheese and some spices (I use a herby stock cube, can be anything though) and blitz with stick mixer until very smooth.
If you can't eat cauliflower, my apologies for sharing my recipe.

I hope this helps and I'm not proposing things impossible for you!