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Struggling with food: diabetes and Crohns

MickyFinn

Well-Known Member
Messages
158
Type of diabetes
Type 1
I increasingly find that I am struggling for what to eat. The biggest issue for me is that I have both diabetes (1 year) and Crohn's disease (12 years). There are many foods I have found I can no longer tolerate because of Crohn's, red meat, dairy, seeds, nuts, rice, potatoes, spinach etc, because I end up bloated, in terrible pain or both.

Diabetes has only added an extra layer on complication to food for me, partly because of the injections and a huge needle phobia, but also because I have had to attempt to modify my diet yet again. I no longer enjoy food, not for many years, in fact I hate it. I hate it even more just lately.

I generally cannot find recipe ideas anywhere because they all include ingredients I can't eat, or even find substitutes for. Three days before Christmas, I got a bad case of acid reflux, which still has not completely gone and have been bloated ever since. I've been modifying my diet for twelve years now, I have had little choice but to be so strict because medications just don't work and if I eat say, a handful of nuts or some red meat, I will be in pain for three or four weeks. I just think I am jaded and burnt out from the constant effort.
 
I completely understand. I don't have crohn's but I do have loads of food intolerances and digestive issues. I used to LOVE to cook but now I just keep everything very simple. No recipes required. I eat avocado at all 3 meals. Bf I just have a slice of deli turkey and avocado. Lunch is some protein, avocado and a FEW chopped veggies drizzled in a little olive oil. Dinner is more protein, avocado and some steamed veggies drizzled in olive oil. Snacks are nuts which you can't have or olives.
I have to be very careful not to over eat veggies and most have to be steamed and not raw. A small handful is enough.

No grains, starch, dairy, sugar, juices, nightshades. Very limiting. I also need to eat small snack size meals vs normal size or I bloat. Maybe there is a certain food trigger you eat everyday that you are intolerant to and don't know it. Eggs? Citrus fruits? Anything. Coffee will bloat me hours after I drink it, it right away. Also reflux later.

Sometimes it feels like I have given everything up for either diabetes or my stomach. I will say I do love my food but it's all very simple. I cook proteins like salmon, turkey, chicken, rare lamb or beef in bulk and freeze in serving size baggies. I always have hard boiled eggs, canned tuna and salmon on hand. Then I just chop some avocado and a SMALL handful of veg and a meal is made. Again, Irving but it works. There is no spontaneity for me anymore. I try to find other things to enjoy and look at food as gas in my car. Pump some in and drive off. Trust me, I have shed many tears over this and there are days it still gets me but this is for the rest of my life so better to just except it and move on whenever possible.

One thing I want to say about digestion is for awhile I strictly followed the blood type diet ( much lower carbs though) and my digestion improved emensly and very quickly. There were foods I was eating every day that were not recommended and as soon as I cut them or replaced them with alternatives within 3 days my constant bloat and pain were gone. Just something you might want to look into. If red meat bothers you I'm guessing your blood type A.

ALL artificial sweeteners tear me up too
 
If there is a food trigger, it would most likely be slightly too many carbs. I have found I have had to increase my carb intake because of levemir, where previously I had cut right down. Carbs, especially starchy types, can be very counterproductive where Crohn's is concerned, so I will cut back as far as I can.

I am already low carb in respect to the recommended daily amount, typically eating between 100g and 180g per day. I probably increased it to around 250g daily and that was enough it seems to give me acid reflux and cause bloating.

That has started to subside now, so I guess I cannot veer even slightly. I have resolved to try and eat more vegetables than I already do, I just have to work out what exactly.

Our respective situations remind of a saying, that some people live to eat and others live to eat. I think we fit firmly in the latter category.
 
@MickyFinn sorry to here you're struggling with food. I don't have any experience with chrons but I was curious as to what adjustments to your diet are being caused by type 1?

You shouldn't have to feed your insulin. If youre having to increase carb intake because of levemir, that sounds like you're taking too much levemir. Levemir is your basal insulin. Basal insulin should keep your levels steady in the absence of good or bolus/fast acting insulin.
 
I was going to say the same thing as carapillar. I could NEVER eat that many carbs and digest them. I only eat about 20 per DAY. My insulin doses are quite low as well. Much lower than when I was 1st diagnosed. I was to,d to eat 20 with each meal and bs was all over the place so I slowLy reduced carbs and insulin. I have eaten 20 c a day since Atkins came out. (25 years). I have only been type 1 for 3 years. I hate feeding insulin. I eat my low carb meals, basically the same macros at each meal everyday and found my dose and now I'm on auto pilot. Very few lows or spikes. The morning is my tricky part. I take a small dose and eat and an hour later another small dose (1/2 unit) and that's stops the morning cortisol rise. Sometimes I check at noon and decide depending where I'm at. It's a pain but if I take a full unit I drop and then spike. Splitting small doses keeps me very steady. Kind of like what a pump would do. Not all people want to go that low carb but that's how I control my bs and stomach best, as well as my weight. I thrive on a ketogenic diet but some people don't.

That is my mantra. Eat to live not live to eat. No other choice.

I have to be very cautious with veggies. Nothing with seeds or thick skins. Cruciferous veggies can cause loads of gas so just a small amount for me. I don't eat any foods in large quantities. Too large of a serving of protein slows my digestion too much. It stinks having D on top of digestion issues. On the bright side, it keeps the grocery bill low. Haha.
 
I'm taking as little levemir as I realistically can, 1 unit in the morning and 2 units at night. I used to eat practically no carbs, but have had to reintroduce some since diagnosis as I am so sensitive to insulin.

I am not in the honeymoon period either as I had acute pancreatitis back in 2011, and the blood test for insulin production taken just after diagnosis, showed I produce almost none. As far as Crohn's goes, making even one change to my diet is dangerous. I spent 11 years finding the best way of controlling it through diet as all medications ever did was mess me up badly.

When I had to reintroduce carbs, I had to make sure I didn't overdo it as I would be bloated and going to the toilet all day, twenty or thirty times. Achieving a balance is crucial and difficult. If I have bread, I make it myself, as all the chemicals in shop bought bread causes issues. Of course, making bread and cooking all meals I eat has other implications in that due to Crohn's and malabsorption, I get chronic fatigue syndrome. I basically have to choose what I can realistically do on a daily basis.

If I get the balance wrong, it can take me weeks or even months to regain it again. For example, last time I ate red meat, I had gut pains for four weeks, so trying new foods is not something I can easily do.
 
And before anyone suggests half unit insulin pens, I am in the process of getting those prescribed.
 
Plus, depending on what bacteria is present in my gut on any given day, it can react to the same foods in different ways on separate occasions. I could be fine one time, and not great another.
 
Sounds like you have to walk a very tight line!!! So sorry to hear all that. And I thought I had issues....

In the US the don't make lantus half unit pens which I really need. For the longest time, up until 2 months ago I took one unit. Now for some reason I need 2 but it can raise me but 3 is too much. I only take it at night.
Most meals are 1/2-1 novolog but those darn mornings are tricky. As soon as I get busy I pop up hence the 1/2 unit an hour after I eat.

I would be afraid to change my foods as well. I'm sure you've kept a journal and working things out as best you can. Do you take bolus insulin as well? If. If not there would still be the option to take one unit at night and one or none in the morning. The half unit pen sounds like it will help a great deal. Of course you should speak to your team before lowering your doses.
 
Before I was diagnosed with diabetes, only a year ago, I probably used to eat between 80g and 100g of carbs a day. I had found potatoes were no good for me, so I cut them out, I had cut out rice and pasta as well. As I said, the only carbs I was eating was bread I make myself, and the occasional small amount of pastry, again that I would make myself. I have very little refined sugar either, but I found it necessary and I suppose that most of the time I have just got on with it and I am okay. It is just I have grown tired of the extreme effort involved after 11 years, and the fact that I can never have a break from any of it.

It's like walking a tightrope, overbalance either way and I'm in trouble.

I do take bolus as well, 1 unit novorapid to every 15g of carbs, so even that is less than most people would typically find they need. Generally I have no trouble keeping tight control of bg, I just find I am highly sensitive to levemir.
 
You are on very small doses as well as I am. I have tried taking 1 unit lantus in the morning to combat my cortisol thing rather than splitting doses but I hypo'd all day long. Continuously needing to eat. So that option is out. I as well have good control but recently needed to up both basal and sometimes bolus.

I don't envy you, carbs tear up my gut so if I had to eat them I would be in big trouble. I eat an 80% fat, 15% protein and 5% crab diet. That being said as for fats I eat an avocado a day (1/3 with each meal), a drizzle of olive oil on my lunch and dinner and a few nuts or pumpkin seeds in between meals. Maybe a few olives and sometimes mayo instead of olive oil. I eat a thin slice of turkey for bf, 1.5 oz protein lunch and 3 oz dinner. A few chunks of celery with bf, a few onions and scallions with lunch and a handful of steamed veggies with dinner. Bok choy, asparagus, broccoli, green beans, brussel sprouts, mushrooms or a combination. As you can see though it's high fat it's still not tons and all healthy fats. Oh, also the fats that come with my proteins as well. But I try to keep them lean. So I don't over eat anything really. This is the only way my stomach doesn't buck up. Coffee will make me bloat hours later. I did find a cold brew that I don't react at all to and it's good warmed up. Much less acidic. But it's rocket fuel so a bottle can last me 3 or 4 days. Just a few sips throughout the morning. Very economical. !!

I understand the feeling of being backed into a corner and even having very little control over your life. Between D and stomach it can be depressing. No spontaneity, everything balancing, equally, weighing. Shame food can consume someone so much. Takes a lot of the fun out of life
 
In a way, yes, it does take the fun out of life. I work as a freelance photographer, and if I am on an all day shoot, it takes planning. A lot of planning. I can't just go do the work and I have to make sure I don't do too much work.

As for the small doses, I was originally on 2 in the morning and 3 at night, but during the year that was adjusted down because I was going low. Not hypo low, but getting very close to it on a regular, almost daily basis.

Fortunately, the bloating has eased because I have been ultra careful for three days.
 
Mickey, I'm sorry but I don't have any solutions, I just wanted to let you know you're not the only one. I have had T1D for almost 10 years and Crohns for nearly 25 years (I am 41). For a long time, my Crohns was like yours, uncontrollable and ruining my life, despite having had extensive surgery including a colectomy. In exhaustion, I took up my doctor's suggestion of long-term immunosuppressive medication (azathioprine), which has it's problems but has considerably improved my health and my quality of life. I do find meals and tight control for my diabetes difficult sometimes as I rely on starchy carbs to keep my gut relatively normal - I would never get away from the loo otherwise. I have a reasonable hba1c of 38 but I know things could be better.
 
Very happy to hear things have calmed. My digestive issues never made me be near a bathroom. The opposite actual. That has to be harder than controlling D!! My heart goes out to you. I hear you on the planning, thinking ahead, bringing everything etc. Eating out is no fun anymore. As ridiculous as this sounds I'm probably going to pack some food to bring to my daughters wedding!!! It shouldn't be a problem as the ceremony is at 7 and food following. I need to eat before 8! So I'll eat before we arrive. I dont want to spend the night bloated or in pain in my beautiful dress. Then if there is food that I know I can eat I can just have a snack. I'd prefer that than the anxiety of thinking about it. I bring my avocado wherever I go haha. Then I just find some clean protein not swimming in gravies and sauces.

My how my life had changed.

The other night I had a huge unexplained hypo at 2&4 in the morning. Then I remembered I vacuumed th whole house, washed floors etc. Too much activity and all forms of exercise raise me and then whenever it feels like, hours later I drop. I used to love working out and now I even have to be careful not to vacuum too much. Haha. But not really funny. Pathetic.
 
Two horrible diseases to contend with on a daily basis is overwhelming to manage. I just want you to know that you are being thought of this moment and I wish you well to get through the day. I have T1 and a second chronic condition and understand how relentless and exhausting it is. Some days I just want to give up and say enough is enough and quit.
 
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Two can be horrendous to deal with, although I almost hate to say I do have a third permanent illness!

Luckily that one is not active.
 

Normally the Crohn's is under control, purely by use of diet, and following two operations in 2011. That control is only through a restrictive diet, and I do still experience problems like the acid reflux from time to time. Azathioprine is the reason I have diabetes, it gave me pancreatitis.

Overall, I found it had a horrendous effect to on me, but that's the thing, no one knows how any individual will respond to medications. I later found out that azathioprine was never issued with a licence for use with Crohn's, but is used anyway. I don't know if your doctor has told you, because it's common for them not to, but it's not recommended to be on aza for longer than approximately five years because of the effect it has on the immune system, and then a 'holiday' is needed. The thing about needing to cover up in the sun and be careful of bacteria/infections actually brought out OCD in me as well.

Hopefully things go well for you though, but it's best to be aware of all of it.
 
Different types of activity or exercise can do that kind of thing I'm afraid. When I go to the gym, resistance training can push my bg up, but it will drop sharply within two hours, so I cannot treat those highs, but instead have to eat a small amount of carbs.
 
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