Gastroparesis and/or PEI - Who treats your condition and how?

[LorraineP]

I'm asking because for the past 18 months I've had regular episodes of vomiting, hard to control hypos and erratic blood sugars. I've been diagnosed with gastroparesis and Pancreatic Exocrine Insufficiency (PEI) as a result of an undersized and atrophied pancreas.

My gastroenterologist prescribed Creon for the PEI but says he can't help me with the blood sugars so he's referred me back to my Diabetic Consultant with no solution for the vomiting, diet plan or prognosis. He said there's nothing he can offer me for gastroparesis except medication that my GP refuses to prescribe.

So I saw my diabetic consultant yesterday hoping that he would be able to explain how gastroparesis and or PEI (or both in combination) could be causing my problems. I was hoping he would offer me a treatment plan, medication, diet plan and a prognosis for the future. But none of that happened.

Instead he was irritated that I was referred back to him and snapped that there was "nothing he could do for me". He repeated this phrase twice each time substituting the word "nothing" with "zero" and then "zilch" as if to emphasise his point to his stupid patient who was only sitting listening silently. He thinks I'm the responsibility of my gastroenterologist because I'm vomiting. Even if it's caused by PEI, I asked? He replied that it didn't matter, I'm vomiting so I'm the responsibility of the gastroenterologist

He made no attempt whatsoever to think through how he could help me even though he knows I've had these symptoms for a long time and they're wearing me down. He didn't even make an effort to look at why I'm having so many hypos on so little insulin.

I'm devastated. I know that gastroparesis can cause hypos but I use Combo boluses and watch how my BG moves after eating. But I'm not aware of other people with the condition having the same level of trouble with daily hypos. I also know that PEI can make BG very difficult to control until the right dose of Creon is found. I think it can also cause nausea and vomiting? I've only been on 10000 tablets until last week. I was hoping to get more advice from one or other consultant than a prescription thrown at me and left to deal with it on my own.

That's why I'm interested to know what treatment, support and advice other people here with the same conditions get? Thankfully, I recently asked my GP to refer me to a different diabetic consultant at a different hospital. I just hope I don't jump out of the frying pan into the fire.

.

 

[Ljc]

Sorry I can't help. Hopefully others here will be able to.
I think it's awful the way you're being spoken to. It is neither your fault or choice to be referred backwards and forwards like this, instead of going on at you. Imo they should be sorting it out in private between themselves.
Personally I think you have made the right decision in asking to be referred elsewhere and sincerely hope you receive better care.

 

[Ref]

I don't have gastroparesis as such but since my total pancreatectomy have the same problem. When I was on MDI I used to have around 3 hypos a day but have managed to reduce this to around 3 a week since I moved onto a pump and with the use of a freestyle libre. I use a lot of dual waves but it is guesswork as to how much up front and for how long the 'wave' should be. I'm currently working on the theory that it is the GI which is key - the higher the GI, the more up front and the shorter the wave - and vice versa. I pre-bolus for high GI but not low.

Other than get me on the pump and help with my basals my consultant has not been able to offer much advice but I have been quite proactive so she hasn't needed to.

I record everything I eat - the starting BG, carbs, total units, up front / wave ratio and duration and then see how things go. Next time I have that meal or something similar I review what happened last time and adjust accordingly. Sometimes it works and sometimes it doesn't.

A few things about creon (apologies if you already know this)

• you can't overdose so don't worry about taking too much.
• they are not a '3 times a day' capsule - only take them when you eat and adjust the amount you take according to the fat content of the food
• spread the creon throughout the meal - some people find that having a couple of mouthfuls before taking the first capsule helps
  
• if you find you need a lot of creon per meal then ask for 25k capsules (I have up to 150k per meal so 10k capsules would be a meal all by themselves)

I'm surprised your consultant didn't suggest something like metaclopramide to help - was he a pancreas specialist or a general gastro? If he is a general gastro then I would strongly recommend asking for a referral to a pancreas specialist.

Finally, if you haven't already then sign up on the pancreatitis support forum where you can get a lot more support for your pancreatic condition, creon etc

Hope this helps

Andy

 

[LorraineP]

Thank you for the tips Andy, much appreciated. Before Creon, did you get hypos and erratic blood sugars? Did you get nausea and vomiting? Has Creon settled all your symptoms? I ask because I'm doing what I can to manage the symptoms but it seems to make no difference. I've only been on a realistic dose of Creon for a week so maybe it's too early to see a change.

I was indeed worried about overdosing on Creon so maybe I will try 75k with each meal instead of 50k. I was actually hoping that Creon might make my BG go higher as more carbohydrate (as well as the other food groups) would be absorbed but the opposite seems to be happening. My BG is staying persistently low even when I eat without taking a bolus and suspend my pump. I've been tested for Addisons but I don't have it. Did your BG settle down eventually after starting Creon?

I wasn't told about counting the fat content of food, how do you calculate your dose?. I thought Creon helped digest all food groups?

The penny's just dropped with me that maybe my gastroparesis is a result of PEI and not the usual diabetic cause of neuropathy damage to the vagus nerve. I will be very happy if that's true as more can be done for PEI than a faulty vagus nerve. At least Creon can treat it. Metaclopramide was indeed suggested by my gastro consultant for gastroparesis but my GP won't prescribe it.
I take Creon after I've eaten, I'm afraid to take it too early in the meal in case I damage my stomach lining? Is that nonsense? If I'm sick too soon after taking the Creon I get a sore tongue!

Thanks again for your tips. You unwittingly gave me hope that I might not be sentenced to a lifetime of vomiting. But I'll be very interested in hearing if Creon improved your symptoms, and how quickly? I'm sorry about bombarding you with so many questions!

 

[mikeyB]

Why won't your GP prescribe metoclopramide? What right has he got to gainsay the consultant?

 

[mikeyB]

I've just reread your post - you cannot overdose on Creon, and it can't damage your stomach- the tiny pellets in the capsules don't dissolve in the stomach. The best time to take it is during the meal - after the first few mouthfuls, to mimic what your body does when you eat. It won't be as effective if you leave it till after you eat. The correct dose is the dose that that works, so play around with the number of capsules you take until you find the dose that works with a particular kind of meal. High fat, more Creon. You don't need to take Creon if you don't eat, but you do need to take it if you do- even a snack.

 

[LorraineP]

Thanks Mike, all information about Creon will be gratefully received! My gastro consultant didn't prescribe metoclopramide. He mentioned it as a possible treatment but didn't seem keen on it. He just suggested I ask my GP for it if I was prepared to take the risks of a permanent twitch to my face. I know its one of the risks, but really. When I asked my GP for it, he said the practice doesn't prescribe it anymore because of the cardiac risks.

To be honest, if I can improve my symptoms with just diet and lifestyle changes then I'll happily do that. I'd rather not take medication but my symptoms are getting worse and now it feels like Creon is my last hope. Anything I know about PEI I've gleaned from the internet and this site, because my consultants and GP aren't offering me any information. The gastro's eyes glaze over when I ask about blood sugar problems resulting from PEI and the diabetic consultants eye glaze over when I talk about the vomiting side effects of PEI. They each think I'm the responsibility of the other and I just want to find a doctor who will talk to me about the condition and how I can manage it. I live in N Ireland, which has a much smaller pool of specialist knowledge. The expertise is there but we just have fewer specialists to choose from.

I've also learned that quite a few diabetics have PEI, but it seems that most develop it from pancreatic damage or disease and then diabetes follows. I had diabetes first, then developed PEI because my pancreas shrivelled up. I haven't had pancreatitis. Recent research suggests that roughly 50% of long term diabetics will develop PEI as the pancreas can atrophy over time due to lack of insulin production. My gastro didn't know anything about the diabetes effect and told me bluntly that it's caused by heavy drinking. He was disappointed to find that scans showed my liver was normal and I was telling the truth about being a moderate drinker!

So many diabetics complain about their blood sugars behaving erratically that I wonder how many are walking around with PEI and don't know it? It's not even mentioned as a complication on the Diabetes UK website.

 

[eggyg]

Hi Lorraine. I only have a third of my pancreas and it's atrophied, I have been taking Creon for 10 years and the others are right take as many as you need, I use the 25k and have 3/4 each meal , sometimes up to 6 if we are out for a meal and I need my food to stay in my stomach, if you know what I mean! I don't have gastroparesis but have gastric dumping syndrome, i.e. the small intestine gets overloaded very quick, I can pass out or at least get very sweaty and need to lie down for an hour. It's a case of trial and error with the BGs and the Creon. I have every sympathy, as if we don't have enough to be going on with! There is some good news though...you are now a fully affiliated member of the Creonistas! A very exclusive club amongst diabetics, funny handshakes and everything!

 

[LorraineP]

Thanks for making me a member of the Creonistas club eggyg! I don't like the qualification procedure for entry though lol 🙂

 

[Ref]

I prefer to think of myself as a creonnoisseur 🙂

I developed chronic pancreatitis due to a birth defect so came to creon and diabetes over a long period of time. Long story short - a routine blood test showed a borderline HbA1c result so I went for an OGTT but that was ok. Scratch chin and repeat every 3 months until I was diagnosed with CP as an incidental finding. Started creon. The CP progressed and eventually my HbA1c tipped into the diabetic range and I started on metformin. As the CP developed further (over a period of years) I started to get hypos. My diabetes consultant was going to switch me onto glicliazide but I had a total pancreatectomy before that could happen. My diabetes consultant is of the opinion that in most cases creon lowers BGs but there are many, many exceptions.

I think most of us with PEI have had a lecture or been questioned about drinking at some point or other. I've developed ways of dealing with it.

I agree with both of Mike's posts.

The pancreas is a tricky beast so if your consultant is a general gastro than I STRONGLY suggest you ask for a referral to a pancreas specialist.

 

[Ref]

One more thought

Have you been prescribed a PPI such as omeprazole or lansaprozole? Most people who need creon also need a PPI to reduce the acidity of the stomach acid - one of the functions of the pancreas. Before I knew I had CP I used to have a lot of reflux and would often wake in the night choking and unable to breathe. Omeprazole was the first thing my pancreas consultant prescribed (a benefit of seeing a pancreas specialist rather than a general gastro).

Let us know how you get on.

Andy

 

[LorraineP]

Hello Andy, thanks for all the information. Yes I was prescribed Omezaprole last year but for a slightly inflamed stomach lining found during an endoscopy. I didn't stay on the medication as my sickness became worse and I thought it might be at fault. So, does a spluttering pancreas produce too much stomach acid? You see no doctor has explained to me how PEI will affect me so I'm learning! I haven't had reflux though, it sounds horrible!!

I haven't had a lecture on drinking but I only take the occasional glass of wine. However I find that even a small glass f wine is enough to make me feel sick so I stick to the alcohol free stuff now. Everything tastes different now. Lucozade tastes like it's made from salt!

I spoke to a brilliant dietician today who seems to have a good understanding of PEI and she's helping me to create a diet plan of foods I should be able to tolerate. Happy days!!

 

[Ref]

The pancreas does not produce acid. @mikeyB may correct me here but my understanding is

• your stomach produces acid to break down food.
• This acid / food mix then moves to the duodenum.
• The pancreas produces an alkaline substance which is released into the duodenum to neutralise the acid / food mix and enable the enzymes (also produced by the pancreas) to extract the vitamins, minerals etc

So if there is a problem with your pancreas then the neutralising of the stomach acid doesn't happen, which is why most people with exocrine pancreas problems take omeprazole or lansaprazole. Again, you really do need to see a pancreas specialist to see if you should be taking it.

One more thing - alcohol is a definite no no with exocrine pancreas problems.

Glad you had a good appointment with the dietician and get some relief from the vomiting.

Take care
Andy

 

[LorraineP]

Thank you so much Andy, you've been such a help!

 

[mikeyB]

Spot on, Andy, nothing to disagree with there🙂

 

[Ref]

Thanks Mike

Lorraine - can't emphasise enough how important it is for you to see a pancreas specialist

 

[Jan Ross]

I took metoclopramide for 15 years and I can certainly tell you that the side affects are not simply a tick in your neck.
They are serious mental and physical side effects and your GP is correct to be concerned for you. An NHS warning was issued a couple of years ago with good reason limiting their use.
If you decide that you wish to continue forward by taking metoclopramide regularly then you should read and familiarise yourself with the medical literature first and make yourself fully aware of all the risks. Stating you're prepared to risk a "tick in the neck" is naive and detrimental to your own health.
I wish you luck on your journey but would advise an alternate path to metoclopramide.