Gastroparesis

[sinead.morgan]

Im 27 and have been T1 for the last 24 years. For the last 4 years i have been struggling with gastroparesis. I have recently been given botox injections in my stomach which have helped reduce the symptoms slightly but was wondering if anyone else living with this has any tips or tricks that help make life easier? The vomiting and bloating are horrible.

 

[lawrain]

Sinead, you have my sympathy. I joined this forum just to answer your post. I'm sorry this post is so long but I hope it helps. This time last year I was vomiting profusely from gastroparesis and then it gradually stopped but I threw so many things at it I can't be sure what actually worked, but something did work. All at the same time I tried antibiotics for SIBO, omezaprole to protect the stomach, daily probiotics, stopped eating high fibre and high fat foods but still the vomiting and erratic BG continued. In fact it got worse.

Things seemed to change when I asked to see a dietician at my diabetic clinic. She was BRILLIANT and asked me to keep a food diary. She identified the mistakes I was making in my diet. For example, I had forgotten that healthy foods are full of fat too and I had been eating oily fish nearly every day, sometimes for lunch and dinner on the same day. I was also eating a lot of avocado and other types of foods with "good oils", but they're all bad oils to people with GP. She told me to limit my fat intake from all foods to 45g per day. I now do that with the help of the Carbs and Cals app and I haven't been sick since I took on her advice. I'm not on any medication for GP and I haven't had any other treatment so I can only put the improvement in symptoms down to the low fat, low fibre diet which I'm sure you already know to avoid.

However there's another angle to my story which could also affect other people with GP. At the same time as being diagnosed with GP I was also diagnosed with endocrine pancreatic insufficiency (EPI). My pancreas is atrophied and can't produce enough enzymes to digest food. I haven't had pancreatitis, pancreatic surgery or cancer so the EPI is believed to be caused by long term Type 1 diabetes.

Not enough research has been done on this yet but its believed that up to 50% of T1's have the condition and don't know it. They will complain of erratic BG, too many hypos and perhaps nausea. It's believed that EPI often goes hand in hand with GP so I asked my doctor to do a fecal elastase test and so EPI was diagnosed. It's treated with enzyme tablets (Creon) with each meal and it breaks food down into smaller molecules for digestion. My stomach motility has improved so much since taking Creon that I only need to do an extended bolus on my pump in the evening now.

So I can't be sure if its the diet or the Creon that helped but I think it was probably a combination of the two. My latest Hb1ac was 6.2 and I've started to see a blood sugar pattern for the first time in years. Also the Creon helps me to absorb nutrients so I feel much healthier now. Most importantly, my hair has stopped falling out and I have a flat (most of the time) non gurgling stomach!! Another tip, I also take probiotics every day and I've been advised to take them for the rest of my life.

EPI symptoms can be similar to GP so treating GP and leaving the EPI untreated can leave you with the same symptoms. It can appear that the GP treatment isn't working. So it can't hurt to ask for a fecal elastase test just to eliminate the possibility of EPI. You may well not have it but if you do, it's nothing to be frightened of.

I first stumbled across EPI in a Nursing Times article with the title
"Pancreatic exocrine insufficiency in type 1 and type 2 diabetes – more common than you think?" If you google this you should find the article.

Good luck in feeling well again!!

 

[sinead.morgan]

Thank you so much i knew about avoiding fibre but like you had no idea about limiting the healthy oils and fats. I will definetly ask to talk to the dietician and ask about the epi because my blood sugars are erratic its a nightmare to control. I cant get my hba1c below 9 im constantly testing and correcting and have hypos out of nowhere.

 

[lawrain]

That sounds like me last year! Will you let me know how you get on?

 

[sinead.morgan]

I definetly will

 

[DCUKMod]

Im 27 and have been T1 for the last 24 years. For the last 4 years i have been struggling with gastroparesis. I have recently been given botox injections in my stomach which have helped reduce the symptoms slightly but was wondering if anyone else living with this has any tips or tricks that help make life easier? The vomiting and bloating are horrible.

@sinead.morgan - I'll tag @donnellysdogs , as she has long standing digestion issues and has been through all the hoops, I reckon.

Good luck with it all. It seems like a totally rotten condition to live with.

 

[donnellysdogs]

I too had to significantly reduce fat. I had on advice from forum members here increased my fat but it screwed my cholesterol up and also significantly altered my reactions with stomach and colon... so now I am on barely any fat, but if I do use any its coconut oil or evo.. no cream-realised that was a no, no. Tried full fat milk as well at one point, but that significantly added to probs.

I take it, that you are under a gastro consultant specialising in GP??

I too can only eat mushy food.. my dietician at hosp didnt have a clue.. suggested I had condensed milk... my gastro was horrified! She was trying to get some weight on me... pretty dire some of her advice.

I was intolerant to all PPI's such as omeprazole but following my gastro advice of avoiding anything with onions or tomatoes even onion powder or soup..all reflux has stopped.

My problems were impacted even worse by prescribed Opoids And painkillers... significant change from taking lubiprostone on a constant basis. (Only prescibed by consultant and supposedly not to be taken for more than 28 days) but I have taken for 18 months now.
The prescribed meds basically paralysed colon worse than it already was with slow colonic transit. It still very slow but doesnt spasm or bloat so much now.

Trying to keep upright and walking is important... lying and sitting deadens movement. I stand immediately after eating. Quite often I will also eat standing up. My worse times for spasms and bloating is bedtime... daytime now with desperately trying to avoid looking 9 months pregnant I spend more time upright on my legs.

Have you been fed by tube at all? It maybe that this is the option that now needs to be considered.

 

[lawrain]

Donnelysdogs, yes staying upright after eating is good too. I even bought myself a mini treadmill and a standing desk so I can walk or stand upright while I'm working (I work from home so I don't need to worry about looking daft in an office!). I also tried eating chewing gum after eating to stimulate digestion but I soon got fed up with that!

 

[sinead.morgan]

Yeah i see a consultant for my GP it was his idea to try the botox injections they have helped and im being sick less he said if the injections dont work then i can possibly try a gastric pacemaker.
Omeprazol seemed to make some of my symptoms worse so stopped that. I take eurithromycen constantly although like your lubiprostone its only supposed to be on a short term basis. It helps with a problem i get that i burp a lot and when i do it smells like what i would describe as sulphur its the most embarrassing side effect of the GP that i get. Do you ever have that? Is there anything you avoid specifically to stop it if you do?
I avoid eating anything acidic to try and stop the reflux i found peppers were the worst culprit for that. I cant believe you were given such bad advice by your dietician.
I do try and move as much as possible i get up and walk in the office and go to the gym i usually wander round the house for a while after dinner too but i might try eating standing like you. Some days the bloating is so bad its actually painful.
Im hoping to avoid needing to try the feeding tube for as long as i can so trying every other option possible first.
It sounds like you have had an awful time with it. How long have you had gastro issues?

 

[donnellysdogs]

Donnelysdogs, yes staying upright after eating is good too. I even bought myself a mini treadmill and a standing desk so I can walk or stand upright while I'm working (I work from home so I don't need to worry about looking daft in an office!). I also tried eating chewing gum after eating to stimulate digestion but I soon got fed up with that!

I have a vibration plate recommended by a forum member here. That also helps a lot too. It also wobbled my seroma away effectively on my 2nd mastectomy.

I've also ate chewing gum but find it increases me gulping air which seems to travel then thru colon....

Glad others do the same sort of thing to be honest...

 

[donnellysdogs]

Yeah i see a consultant for my GP it was his idea to try the botox injections they have helped and im being sick less he said if the injections dont work then i can possibly try a gastric pacemaker.
Omeprazol seemed to make some of my symptoms worse so stopped that. I take eurithromycen constantly although like your lubiprostone its only supposed to be on a short term basis. It helps with a problem i get that i burp a lot and when i do it smells like what i would describe as sulphur its the most embarrassing side effect of the GP that i get. Do you ever have that? Is there anything you avoid specifically to stop it if you do?
I avoid eating anything acidic to try and stop the reflux i found peppers were the worst culprit for that. I cant believe you were given such bad advice by your dietician.
I do try and move as much as possible i get up and walk in the office and go to the gym i usually wander round the house for a while after dinner too but i might try eating standing like you. Some days the bloating is so bad its actually painful.
Im hoping to avoid needing to try the feeding tube for as long as i can so trying every other option possible first.
It sounds like you have had an awful time with it. How long have you had gastro issues?

I'm 5 years from the first initial diagnosis of slow colonic but the stomach and extra started far worse about two and half years ago now. I only ended up on prescibed opoid meds and diazepam etc because of biopsies for breast cancer that put my neck in to spasms..but coming off them didnt stop all the problems getting worse.

I agree with peppers.. I have to eat overcooked broccoli everyday for iron. Not the vitamins. Meat and especially any fat from it is hell. No fruit with skins. No salad possible as only can manage skinned cucumber or avocado small piece. I can eat stewed blueberries and yogurt. Icecream. Can eat soft veg like courgette, mushrooms, butternut squash (small amount) mashed parsnips, mashed potato.
Omelette. Homemade fish pie, homemade corned beef hash, altjough both seem to fluctuate with effects but I need nutrition.. no bread, cake, or cereal. I did experiment however with a really booxy sherry trifle with madelines over christmas and survived it!! Think the custard and alchohol helped!!

I was on smoothies for a long time but with more yogurt and water than things like coconut milk or other almond milk etc.

I can tolerate some nuts suprisingly but I do have to mainly chew, chew these. They go down but come out whole as I swallowed them if they arent really chewed.

I still rarely eat more than a teaplate of mushy food a day but have started to be able to try some more providing I stand and walk more than sitting, and go on vibration plate.

Gift, gastro intestinal failure trust on FB has some phenomemal people on it, some starting their journey with it and some that have progessed through to pacemakers, jpegs etc... some diabetics. They really are the warriors fighting for health and better understanding and treatment of this vile illness.

There is stomach ache or diarrhea that many will complain of. But boy, this disease people just do not know how bad it is and how ill equipped the medical people are all over the world to help patients. It is one of the toughest diseases ever... I dont think anybody really realises just how bad it is unless they suffer from problems so significant.

 

[mcmoggy261]

This is great! Lots of good tips etc. Just had colonoscopy and colonograph CT scan for painful neuropathy-like symptoms all over my digestive system along with stop-start diarrhoea and constipation. Still awaiting results but it seems pretty obvious what it is likely to be diagnosed. It's horrendous feeling quite ill all the time and having to wear nappies is a tad embarrassing. Recent hypo's have gone really deep with loss of consciousness also.

 

[donnellysdogs]

This is great! Lots of good tips etc. Just had colonoscopy and colonograph CT scan for painful neuropathy-like symptoms all over my digestive system along with stop-start diarrhoea and constipation. Still awaiting results but it seems pretty obvious what it is likely to be diagnosed. It's horrendous feeling quite ill all the time and having to wear nappies is a tad embarrassing. Recent hypo's have gone really deep with loss of consciousness also.

Did person doing coloniscopy give you any indication of what was found? Both my hospitals told me immediately before discharge from daycase sgastro dept.

Hypo's and hypers can be felt more when stomach/colon is not behaving.. the insulin is in us... but we havent got a clue how its being processed in our innards.

Best to stick to keep a detailed info sheet for each day including food bate and what happened on that day for poo..

For me, my colon takes 3-5 days to pass food through. From doing my daily log sheets and looking back I could tell what food to avoid. I ate and still do, the same food for 3 days. The only day I dont do this is Saturday but we normally have the same food each Saturday.

Ie I will make 3 days of my fish pie and analyse every meal reaction and how it affects me later in the week.

Everybody can easily check the travel time in their colon by eating sweetcorn... it cones out whole anyway and if you look at poo you will see it.. and you will know when you ate it. Good info to give to a gastro...

 

[mcmoggy261]

Did person doing coloniscopy give you any indication of what was found? Both my hospitals told me immediately before discharge from daycase sgastro dept.

Hypo's and hypers can be felt more when stomach/colon is not behaving.. the insulin is in us... but we havent got a clue how its being processed in our innards.

Best to stick to keep a detailed info sheet for each day including food bate and what happened on that day for poo..

For me, my colon takes 3-5 days to pass food through. From doing my daily log sheets and looking back I could tell what food to avoid. I ate and still do, the same food for 3 days. The only day I dont do this is Saturday but we normally have the same food each Saturday.

Ie I will make 3 days of my fish pie and analyse every meal reaction and how it affects me later in the week.

Everybody can easily check the travel time in their colon by eating sweetcorn... it cones out whole anyway and if you look at poo you will see it.. and you will know when you ate it. Good info to give to a gastro...

Hey thanks Donellys, I had to be referred for a colonograph CT scan because during the endoscopy my bowel had not emptied properly, so nothing to report from the colonoscopy apart from what they could see was healthy looking,

I've had this for quite some time now and it's gradually got worse so this has given me the opportunity to try a variety of diets/foods and my bowels reaction to these. It takes 3 -5 days from eating to bowel motion. Fatty foods make things worse and really painful. After each bout of liquid poo there is a hiatus of about 3 - 5 days, then there is increased pain, bloating and severe flatulence followed by a reasonably firm poo which quickly turns to liquid then the cycle repeats. Note* Passing each motion requires some straining whether firm or liquid. Although once wholly liquid it does lead to nightly incontinence, hence the nappies.

 

[Londongirl]

Wow lawrain, what brilliant information you have given about EPI. I have been struggling with severe G.P for over two years now and have recently joined ths forum and posted about my G.P symptoms in desperation. Was given some wonderful advice and support by forum members, but your post is the first time I've heard about EPI being related to G.P and T1. I will definitely ask my doctor to carry out a fecal elastase test-just to find out if I also have EPI or not.
Thanks again for posting about this

 

[lawrain]

Hello again, I’ve come back to give you all an update on EPI. I saw an NHS gastroenterologist last week (after an 18 month wait!) and he told me that he doesn’t think I have gastroparesis (GP) after all or if I do then it’s very mild. He also does not think I had SIBO. He told me that all my symptoms, feeling full, vomiting, pain, gas, bloating, relentless hypos were all caused by EPI. He was very confident about this and said he had seen it before.

I’ve learned that the symptoms of GP and EPI are very similar but the conditions have a different cause and different treatments. The most well-known symptom of EPI is diarrhoea but I didn’t have that. I had other symptoms not listed against EPI, but these additional symptoms were likely due to poor absorption and nutritional deficiencies. I had chronic fatigue, cravings for carbs (always unsatisfied), hair loss and crumbling toe and finger nails.

EPI will be well known to Type 3 diabetics but bear in mind that I’m a Type 1 diabetic who has never had pancreatitis (CT scan confirmed this), pancreatic or stomach surgery or cancer (again CT scan confirmed this). I have a small, shrunken pancreas which has atrophied after 40 years of no insulin production so there can be no patient blaming for this diabetic complication lol!!

I joined an EPI group this weekend and I was surprised at how many people there said they had vomiting before treatment as it’s not listed as one of the symptoms of EPI. Another symptom not listed is monster hypos which even non diabetics with EPI said they had, although one person said they have hypoglycaemia. If EPI can cause low blood sugar in non-diabetics imagine how difficult it can be for insulin dependent diabetics!

I’m amazed that the diabetic world is so unaware of this diabetic complication. My doctor told me it’s because large scale studies haven’t been carried out yet. I’m determined to raise awareness of this condition especially among people who have been diagnosed with gastroparesis.

I don’t want to raise false hope especially in people who are going through a bad time with GP but I just want to raise awareness of the possibility that EPI could be a factor.

I would like to be able to attach a link to the original article I found that alerted me to EPI but every time I try, this site stops responding. If you haven’t read it, I think it sets out information on EPI very clearly. You could try googling “Pancreatic exocrine insufficiency in type 1 and type 2 diabetes – more common than you think?” The author is Professor Michael Cummings and the article was in the Journal of Diabetes Nursing in 2014.

I will be very interested to read updates from people on here although I have to say I may not be able to post. I’ve had a lot of trouble logging in since I joined (probably my fault because I forget my passwords). I’ve also had a lot of trouble posting (this is my third attempt) but I’ll be able to read your posts. If I can help just ONE person it will make my year!!

 

[donnellysdogs]

Hello again, I’ve come back to give you all an update on EPI. I saw an NHS gastroenterologist last week (after an 18 month wait!) and he told me that he doesn’t think I have gastroparesis (GP) after all or if I do then it’s very mild. He also does not think I had SIBO. He told me that all my symptoms, feeling full, vomiting, pain, gas, bloating, relentless hypos were all caused by EPI. He was very confident about this and said he had seen it before.

I’ve learned that the symptoms of GP and EPI are very similar but the conditions have a different cause and different treatments. The most well-known symptom of EPI is diarrhoea but I didn’t have that. I had other symptoms not listed against EPI, but these additional symptoms were likely due to poor absorption and nutritional deficiencies. I had chronic fatigue, cravings for carbs (always unsatisfied), hair loss and crumbling toe and finger nails.

EPI will be well known to Type 3 diabetics but bear in mind that I’m a Type 1 diabetic who has never had pancreatitis (CT scan confirmed this), pancreatic or stomach surgery or cancer (again CT scan confirmed this). I have a small, shrunken pancreas which has atrophied after 40 years of no insulin production so there can be no patient blaming for this diabetic complication lol!!

I joined an EPI group this weekend and I was surprised at how many people there said they had vomiting before treatment as it’s not listed as one of the symptoms of EPI. Another symptom not listed is monster hypos which even non diabetics with EPI said they had, although one person said they have hypoglycaemia. If EPI can cause low blood sugar in non-diabetics imagine how difficult it can be for insulin dependent diabetics!

I’m amazed that the diabetic world is so unaware of this diabetic complication. My doctor told me it’s because large scale studies haven’t been carried out yet. I’m determined to raise awareness of this condition especially among people who have been diagnosed with gastroparesis.

I don’t want to raise false hope especially in people who are going through a bad time with GP but I just want to raise awareness of the possibility that EPI could be a factor.

I would like to be able to attach a link to the original article I found that alerted me to EPI but every time I try, this site stops responding. If you haven’t read it, I think it sets out information on EPI very clearly. You could try googling “Pancreatic exocrine insufficiency in type 1 and type 2 diabetes – more common than you think?” The author is Professor Michael Cummings and the article was in the Journal of Diabetes Nursing in 2014.

I will be very interested to read updates from people on here although I have to say I may not be able to post. I’ve had a lot of trouble logging in since I joined (probably my fault because I forget my passwords). I’ve also had a lot of trouble posting (this is my third attempt) but I’ll be able to read your posts. If I can help just ONE person it will make my year!!

Wow, very interesting... will start getting more info, thank you.

Does EPI have a means to be managed?

 

[lawrain]

Wow, very interesting... will start getting more info, thank you.

Does EPI have a means to be managed?

Yes, it's very easy. Just pop a couple of Creon (or other brand name) tablets every time you eat and the enzymes will do the work of breaking the food down so it can move along the digestive system more easily. Diet is the same as the diet for gastroparesis, i.e. low fat and low fibre. I didn't see immediate changes, it took a maybe 3 months before I realised I was out of the woods.

Like diabetes, EPI is a self managing condition. I manage it by using the Carbs and Cals app as counting grams of carb, fat and fibre every day is a bit tedious! Everyone will have their own limits but I limit fat to 45g max per day with a max of 20g fat at any one meal. I limit fibre to a max of 15g per day. These are just the limits I found worked best for me as I can feel nauseous if I exceed them. I suppose everyone will find their own limits.

On the EPI community they all seem to tolerate different foods.