Slow digestion

[Ref]

Hi all

I had a total pancreatectomy in September and have been getting to grips with the diabetes. For a while I was getting quite frustrated as the numbers from my BG meter were way out of line with what I expected them to be plus I was having lots of lows an hour or so after eating - I even had my meter checked in case it was faulty.

After lots of testing I've found that after eating anything more than a snack, my BGs tend to fall and then rise so I've come to the conclusion that my food is digesting slower than is normal. This fits in with the full feeling I have for a long time after eating. I should add that the meals do not have high fat content. I'm currently splitting the dose taking around 60% with the meal and then the remainder around 2 - 2 1/2 hours after once I see that my BG has stopped falling and started rising again.

I'm finding this quite tiring and frustrating. Anyway I was just wondering if anyone had any experience of this and could offer some advice.

Thanks in advance

Andy

 

[trophywench]

Hi Andy - I don't but we certainly have at least 2 other members who have ! - so I'm sure they'll be along soon to try and give the benefit of their experiences.

Are you also on Creon, too?

 

[khskel]

It does sound like slow digestion to me. I have a pancreas but it's a sad, withered pancreas and I am a creon user.

 

[Sally71]

Could you ask for a pump? You can tell a pump to spread the meal dose out by anything up to 12 hours and it will slowly drip it in and you can forget about it. I think we have at least one member in here who has this problem and a pump has totally changed things for the better for her.

 

[Caroline]

IT sounds like slow digestion to me too. I have found gentle activity after a meal, a slow walk or something helps.

 

[pottersusan]

Ooh! another member of the total pancreatectomy club 😱 (a very exclusive club no one would choose to join).

I've actually got the opposite problem, not having a stomach either. My digestive system is lightning fast. I sometimes think my food doesn't hit the sides before it emerges the other end, though it does leave a trail of sugar in it's wake😱😱

As other people have mentioned, Creon is important. Do you take it? If so, how much? Also a pump is so much better than injections. If you haven't got one, talk to your diabetes consultant.

I'm heading for 5 years since my op - and still learning a lot about diabetes🙄

 

[eggyg]

Welcome to, as pottersusan said, the club no one wants to join! I'm eight years post distal pancreatectomy, still have a wee bit left, although sadly dying. (Pancreas not me!) I have the glamourously named, gastric dumping syndrome! My gastric system has a mind of it's own! Sometimes,as previously mentioned, my food doesn't touch the sides sometimes it hangs on for dear life! It's a work in progress even after all this time. Creon is my best friend, never go anywhere without it, I'm afraid it's just trial and error, life doesn't seem fair does it, not only have we had to endure major life saving surgery but we're diabetic, sticking needles into ourselves, watching what we eat, rushing to the loo etc etc. But, we're here to tell the tale, and that's what gets me through! Good luck, any questions feel free to ask.

 

[pottersusan]

Ah! The joys of gastric dumping😱

My body does seem to have learned some new habits, thank goodness🙂 though there are days when it decides to keep me on my toes, when I can do the 20m dash in the blink of an eye😱.

 

[Ref]

I had a feeling the answer might be a pump might and it is something I talked about with my consultant before the surgery last September but she hasn't mentioned one since. I will raise the subject when I see her next.

I've been on creon since I was diagnosed with chronic pancreatitis over 6 years ago and which is the reason I had my TP. Weirdly I need less creon now than I did before my op , around 100 -150 for a meal and 50 - 100 for a snack. I'm very lucky that when my pancreas was removed it just fell apart so there was no need to do anything to my stomach, duodenum, gallbladder or bile duct so in theory my digestive tract is intact and everything should be hunky dory - if only theory and practice were the same🙄.

 

[pottersusan]

My Creon is a meal in itself - I take 8 x 25 or more with everything! I'll be glad when the 40's come back - if they do🙄.

In my experience, with the NHS, you don't get anything if you don't ask. The pump certainly improved my life.

 

[AJLang]

I have Gastroparesis which is a form of slow digestion caused by diabetes. I would get this checked by a doctor as it may affect what treatment is available to you for your digestion.

 

[Ref]

I will do, the question is which doctor? I saw my GP this morning and he didn't seem interested but did say I'd be an excellent candidate for a pump. My HPB consultant prescribed metaclopramide which hasn't really helped though he did say there may be other drugs I could try. I'm seeing my surgeon for a post op review on wednesday so will mention it to him but I guess his solution would be more surgery. My diabetes consultant is aware of the problem but, quite rightly, is focussing on reducing the number of lows i'm having because of it (another one today).

Is it just a case of asking for a pump or are there lots of hurdles to jump over?

 

[pottersusan]

Is it just a case of asking for a pump or are there lots of hurdles to jump over?

There are hurdles for the consultant. Some people have to wait years. I was pumping within 8 weeks of my consultant's application. So us pancreasless folk must fit into some boxes or he put a very strong case.

Hopefully your surgeon and GP will look at the whole problem rather than one particular bit. Mine certainly do and call in the necessary person to deal with my 'peculiarities'. I have the joy of seeing consultants in three hospitals - so it's up to me to make sure there is joined up thinking. We are the experts on our situation - no one really knows what's happening inside us!
I've done quite a lot of voting with my feet to get the best care.

 

[Ref]

How long after your TP did you ask for a pump?

 

[AlisonM]

I still have all my bits, it's just some of them don't work too well any more. I have gastro-enteropathy which means that my plumbing either works so slowly a snail could out pace it, or things shoot through so fast I hardly get to taste it before it works it's way through. Makes life 'interesting' to say the least as I never can tell which it will be.

 

[pottersusan]

How long after your TP did you ask for a pump?

I had my op in the July. had real problems with the diabetes consultant (who was past his sell by date) I was with and asked my gp to refer me to Bournemouth in Feb. Saw new consultant March and started pumping in the May.
Looking back I think it was actually beneficial to my learning about diabetes having to do MDIs (emphasis on the M - I was injecting 10 or 12 times a day cos of eating so frequently), to say nothing of my not being well enough to deal with it all any earlier. I wouldn't want to be pumpless now!

 

[Ref]

Interesting. I just wondered if asking for a pump so soon after the op would be seen as not trying hard enough with MDI? I had another low because of it today - this time in the office. I'm injecting a lot at the moment - not sure it is 10-12 per day. Partly because of having to split doses but also because I'm having to snack - my digestive system likes to keep busy otherwise I get a build up of gas in my stomach. Plus, I'm trying to put on weight - I lost a lot before the surgery and am still losing it.

I find it tricky enough dealing with slow digestion - random speeds would drive me mad.

 

[AJLang]

Ref does the slow digestion mean that when you bolus for carbs you go hypo whilst waiting for the food to digest? Do you have any other issues with that e.g. Nausea/vomiting, bloating of upper abdomen due to the food sitting there? If yes I would suggest that you talk to your diabetic consultant about having a gastric emptying study to check for Gastroparesis I.e. Delayed stomach emptying. If you are going hypo after eating one suggestion would be to not inject your bolus until after you have eaten. If you can afford it a Freestyle Libre or CGM can help to identify patterns in what is happenin with regard to bolus/food/BG levels. I've had gastroparesis for six years so please ask if you have any questions.

 

[pottersusan]

I lost two stone as a result of the op and a further stone afterwards as I couldn't eat enough. The only way I stopped the rot was by eating as much as I could every hour I was awake, having a midnight feast 😱 and making everything I put in my mouth count - so no water, black coffee.
A pump would certainly give you more options 'cos of the different sorts of bolus you can give. As @AJLang says if you can afford a cgm or a Libre it helps tremendously. Though I'm conducting a battle to try to get funding.😡

 

[trophywench]

Frankly I don't think there is any harm and may quite easily be a great deal of gain - by asking for it now - and I also think by saying that you have made contact with members of the same 'club' who have all said that it is a brilliant help, won't harm your case either. I truly feel that 'you lot' are one of the 'special cases' there should always be to get a pump.

As to waiting and giving MDI a chance - I have to say I don't think so because from what others have always said - you WILL always struggle MORE on MDI anyway because that's simply the way it is and always will be for the 'club' members. And lots of newly diagnosed kiddies - babies some of em!! - get pumps PDQ - think of the learning curve their parents have to negotiate, at the same time as the normal 'having a baby' learning curve. Horrendous! (Is this normal at this age?/Shouldn't he be doing whatever by now?/Is he too heavy/light for X months?/Do they always behave like this when they go hypo/high/start at nursery? .....)