Non absorption ?

[Animalmadwoman]

My husband is 18 months post op Ivor Lewis procedure, after many complications resulting in him spending 6 months in hospital ICU. He has been home for 19 months approx. He’s always suffered with diarrhoea , nausea abdominal pain , but it comes & goes. We understand about dumping , early & late. The GI team feel it’s not this & possibly non absorption . Has anybody here suffered with this? Are they similar symptoms? And how does Creon affect you if prescribed. Thanks in advance.. he’s so miserable with this & is losing weight fast!

[AussieCuz]

Hi there, sorry to hear re your husband. I started taking Creon due to not gaining weight. For me it worked at stabilising the weight loss. I used it for about three months without side effects. I had a feeding tube in my nose for six months prior to my op and lost a vast amount of weight. The number one thing I found that helped me to gain muscle and weight back was drinking high protein shakes and red meat. (Not mixed together! Lol) Good quality steak felt like it instantly added muscle tone back on.. The Shakes should have at least 16 grams of protein per 250ml. My journey has been a rough one as well and I am so grateful for this website.

[Animalmadwoman in reply to AussieCuz]

Thank you so much for your reply. That helps as I’m really thinking his problems are down to non absorption . Anything he eats just causes pain resulting in gushing diarrhoea . He’s lost 5 stone , he was putting on a bit of weight but something had recently changed . Waiting for blood tests appt next week. It’s hard seeing him so thin & miserable.

Your advice will help thank you.

Best wishes Rose

[Zippy34]

Hi I have a problem with the absorption. The Creon tablets or if my throat closes up I have Pancrax powder. They help the enzymes form and stop the diarrhoea. I have no effect from them. This also helps me put on weight!!.

[Animalmadwoman in reply to Zippy34]

Thank you for that info , that really helps. I’m so worried , everything he eats goes through him & he’s scarily thin.

I hope in a way that IS the problem, because it sounds like a relatively simple fix!

He is waiting for stool sample results that hopefully will confirm this.

Best wishes Rose.

[liz_crisp]

Hi I am 10 years down the line and took Creon on and off for about a year it helped with gaining weight but I discovered you have to take it after the first mouthful of a meal as it needs to be with the food not follow it. I took it daily for a while and then when I ate foods with fat. It did help and I had no side effects. I had many problems with diarrhoea and cramps, I eventually had my gall bladder out, my surgeon did the op and found I had some adhesions which were causing constrictions. I did have open surgery not keyhole originally. I found that using codine phosphate to manage the diarrhoea worked much better than Imodium, and for constipation sugar or lactolose (the old fashioned remedy for babies) was better. I used a dropper bottle with children's iron tonic in and put just a few of drops on my tongue four to five times a day. Trying to get a teaspoon in but spread over the day, it is much gentler on the gut. I was amazed at the difference iron made to me after a month. A good multi Vitamin helped, I had one prescribed my doctor which was great. I found if I nibbled all day long but very small amounts, Never more than a side plate full at a time. It helped settle things down, did it for a few months Then slowly bigger portions. I took Creon with every plateful with fat in. . Just one or two tablets And then slowly cut it down. It’s all about trying to find what works for you. I was told to imagine my gut was back to being a baby and treat it as a growing child if you wouldn’t feed it to a toddler don’t eat it (alcohol excluded ) then build up from there. don’t stress about the weight and eat full fat foods and if you need energy for that walk or task. Eat something like chocolate or a banana

Or. What ever you feel gives you energy and your tummy likes we are all different. Still have the odd time when I need help from the docs to get back on track but basically life is great and now I can eat normal portions and I know what is likely to cause a definite dumping episode or not. But sometimes that hot chocolate with cream and mashmallows is so worth it take care and good luck it is a long process with ups and downs 😄

[Animalmadwoman in reply to liz_crisp]

Morning Liz, thank you for the very comprehensive reply. It’s almost a comfort knowing that people are experiencing the same and getting through it. I have always been one of life’s worriers and imagine the worst case scenarios. He’s lost a good stone in 3 ( 5 since surgery) weeks,simply because he can’t hold food in. He doesn’t want to go back to feeding tube .

My concern is surgery of any kind possibly not an option because of the journey he’s had last year.

The surgery for eosophajectomy had many complications, resulting in multi organ failure , how on earth he survived I don’t know, then he got sepsis, then pneumonia ... He then got PTSD because of time spent ventilated ( 5 months)I was told many times he wouldn’t survive .

But this is encouraging to know you are doing so well , long may it continue! Thank you 🤗

[AussieCuz in reply to liz_crisp]

It is quite amazing how a standard full plate of food looks like a mountain to me now. I look at my wife and guests plates and think OMG how can they fit all that in! I used to be a two plate per meal person. I always try to look at the upside of situations and I am happy that I now fit into a size 32 inch jeans again! lol Cheers Mike

[jay2908]

I’ve found eating a banana at the start of a meal slows down the progress of digestion. Also hard boiled eggs do the same

[Mauser1905]

He hasn't a stone in a week. And symptoms not improved yet. He has mental health issues as you said in one of your posts.

The inclination to not go for the feeding tube may be coming from combination of above, as diarrhoea dumping is a very hard hitting thing for GI patients. I strongly believe he is not yet in the critical threshold for considering external feed by the GI team, yet. I am concerned of him recovering the weight loss after correct diagnosis and fixing the current issue/s.

Creon meed to be taken one prior to first swallow and thereafter adjusted to portion halfway if two or three. Remember creon has to be taken as a enzyme assistance in digesting the food, not after the food.

Also it helps taking it with water with citrus acid like lime juice.

Some times if not mostly I would say clayed dumping syndrome is such a grey area which require extensive research. Is not comprehensively understood by the GI teams, at times. Not every person gets the same or even typical dumping symptoms.

Good luck.

[kiddy]

Hi there,

I went through all the tests Lactose intolerance, pylori etc all came back negative. I started taking creon and apart from the odd day i am diarrhoea free. I take 3 with meals and 2 with snacks.

I still get dumping on occasions if I have had too much to eat, too much fat or sugar. I also wait 30 mins after food or longer to have a drink. If I don’t i end up with cramping and bloating. I can sip water.

Trial and error

I am 4years march just gone. My weight increased over a stone in the last year of 3 that I lost.

Best Wishes

Debbie

[Animalmadwoman in reply to kiddy]

That’s encouraging Debbie, did they test you for absorption? Cleve’s tests came back in December as ok & above accepted levels. But things do change. He ( because of depression & PTSD ) is worrying that this is something more sinister. It’s such a roller coaster & it’s so miserable when he’s having bad days. I feel helpless. It’s very supportive hearing all the advice on here. Thank you for your reply. Did you have any side affects from the Creon, it says that it can cause abdominal pain! X

[kiddy]

Hi there, no wasn’t tested as far as i know for absorption my bloods were all good. Obviously eliminated the other causes. No side affects from Creon but you have to give it at least a month to start working. My dietician put me on them and adjusted dose.

Yes it is a roller coaster and he has had a rough ride. My husband also felt it when i had bad days ,but eventually you learn to live with the new life. I would say it does take time to feel strong and not worry.

Best wishes

Debbie

[Animalmadwoman in reply to kiddy]

Thank you Debbie, all good & encouraging advice. I think you are all amazing to have this positive outlook, we must get used to a new normal. At least I still have him & I'm so grateful for that! It’s just I wish I could do more to help! X

[grandylynda]

I went from 9st to under 7 after Ivor Lewis. I made it back up to 7st 6 but lost again after emergency hernia opp in nov19. Now cant get past 7 st 4lb. I am convinced I dont absorb everything eat but hasn't been investigated yet. I think it may be if I started losing weight again.meanwhile amitryptiline at teatime has sorted my bowels. Can usually work out what has triggered the odd spate of di.ohoria. cant spell that word.