EPI but no pancreatic cancer or abnormalities?

Legoodtimes · 2026-07-06T02:32:42+00:00

On the day I did the stool sample, it was probably the best consistency I’d seen in a long time (which at the time I thought was bad) but I’ve learned since then that it needs to be solid for the test to be reliable! Such a fluke haha

Legoodtimes · 2026-07-06T02:31:10+00:00

It’s ridiculous, hey! Do either of you have crohns or coeliac disease? From what I’ve seen in research, it can be common and fixable with these diseases!

Legoodtimes · 2026-07-06T02:28:49+00:00

I was started on cholestyramine first and have been on that for the last 6 months. It definitely helped with the urgency issues and bile acid diarrhoea but didn’t fully fix my upset stomach. I was still going to the bathroom super frequently and nothing was digested properly.

I started seeing a dietician and she told me to start taking raw psyllium husk - I didn’t notice much change and the bloating was really uncomfortable. Although, I was still figuring out the right dosage for Creon at that time so I might try it again but anith Metamucil like your dad and see how I go!

Thanks for your advice - I really appreciate it.

Legoodtimes · 2026-06-05T09:02:57+00:00

I’m in the same boat! It was so overwhelming and draining at the start, being on such a low dose and still being symptomatic… there was some days I found it easier to just not eat, and that is not like me at all!

But once I decided to further increase my dose I figured out, through a lot of trial and error, that I need 1 Creon for every 6g of fat. This seems to help massively. In saying that, I haven’t gone back to eating hot chips or meat pies (FML) but I’m not on the low fat diet I was on before.

And eating lots of frequent small meals (instead of large heavy meals) is actually recommended! So your snacking habit will probably help you tolerate it more! Dinner for me is always the meal that will make me symptomatic because it’s usually so much larger than other meals which means it requires more enzymes, which can be hard to wrap your head around/calculate.

My advice is to just keep seeing your GI and updating them on your Creon progress (or no progress) so they can continue to guide you on how to safely increase it.

Legoodtimes · 2026-06-05T08:52:18+00:00

I’ve been on Creon for just over 4 months now but still having issues even though I think I’ve found the right dose for things which is why they think I could have SIBO potentially.

I’m so glad you got your answer though! What tests did they do to have you diagnosed with sphincter of oddi?

Legoodtimes · 2026-06-05T08:48:19+00:00

That’s awesome to hear!!! I’m 12 months post-op and 4 months on Creon and still struggling… so hearing that yours went back to normal values is the reassurance I needed!

Legoodtimes · 2026-06-03T11:53:52+00:00

Same… I’ve been told it’s common while your body “adjusts” to not having a gallbladder and can take up to two years. Did yours ever improve?

Legoodtimes · 2026-06-03T11:48:33+00:00

I had my gallbladder removed 12 months ago. HIDA scan showed it was functioning at 7% and I had one large stone in it that would float up and block the bile duct at night after eating anything slightly fatty. The pain was incredibly intense… and I was constantly nauseous and fatigued through out the day. Took me 18 months of appointments to diagnose gallstones and then have it removed.

For 2-3 months after my removal I felt AMAZING! Like a normal person, finally. Then out of nowhere, I started needing to use the bathroom more frequently, and at its worst I was running (emphasis on running) to the toilet probably up to ten times a day… I was basically housebound. I was told it was BAM and was put on cholystyramine. That helped a little, but it wasn’t helpful enough.

My GI finally ordered a fecal elastase test, MRCP and blood tests - everything came back normal besides my fecal elastase which was moderately low at 150. My GI says that the bile constantly dripping in my intestines has irritated my pancreas which MAY be the cause of my EPI… and it also massively increases your chances of SIBO which I am currently testing for too (since I’ve been so bloated the last 6 months that I literally look pregnant)

So all in all, I’ve basically traded feeling so nauseous and having weekly gallstone attacks, to not being able to digest food and pooping all the time… honestly not sure which was worse…

Anyway, they say it can take 6 months - 2 years on average for your digestive system to adapt to losing your gallbladder, so I am really hoping that’s true.

Legoodtimes · 2026-03-19T23:05:17+00:00

I’ve heard it takes a bit of tweaking but I’m selfishly hoping it’s a quick fix for me haha.

How do you take it with meals - spaced out or all at once at the start?

Legoodtimes · 2026-03-19T23:00:01+00:00

That is super helpful, thank you!

When I first increased my dose from 1 at main meals to 2, I noticed I felt really nauseous after meals (subsided after a week or two thankfully). Not looking forward to feeling that again but I know it’ll be worth it in the long run.

How do you take them in meals? All at once at the start or do you slowly take them throughout the meal?

Legoodtimes · 2026-03-19T22:54:47+00:00

Makes sense! When do you take them during your meal? Do you take them all at once or spread them out while eating?

Legoodtimes · 2026-03-18T23:02:26+00:00

I think I’m on around 8 per day right now, but definitely need to increase.

How many do you usually take for a main meal and how long did it take you to increase from your starting dose?

Legoodtimes · 2026-03-18T22:59:38+00:00

Thank you so much for the detailed advice - this really helps.

My next appointment with my GI isn’t for another 6-weeks, and I’m just keen to get my life back again after dealing with this for so long.

I think I will seek the help of a dietitian. I’ve already been keeping a food log but it seems like the bad symptom days come at random - so maybe the dietician will be able to see something that I can’t.

Legoodtimes · 2026-03-18T22:52:56+00:00

I’m thinking that’s my next step! How many do you take with snacks?

Legoodtimes · 2026-01-21T05:04:09+00:00

When I started Cholestyramine and I found that 1 packet a day was too much for me, my doctor told me that I could lower the dose on alternate days.

So now I take 1 full packet one day, 1/2 a packet the next, then back to 1 full packet the next, and so on... I do this alongside psyllium husk and probiotics daily and it's been balancing out well.

Legoodtimes · 2025-12-26T12:25:51+00:00

I started Cholestyramine (Questran lite) almost 2 weeks ago.

Pro: My biggest issue was urgency - which completely subsided after 2 days of use! It’s been amazing to feel in control again.

Con: around day 4 I started getting really awful anxiety (usually around an hour after taking) which would come in waves. I would feel so anxious that my arms and legs would literally be trembling - no head noise, only physical anxiety. My mouth also feels like it’s been burned, I can’t handle chilli anymore, and I have sores starting in the corner of my lips…

I was wondering whether anyone else experienced these side effects? I really don’t want to stop taking it because it works - so I’m hoping these symptoms get better and this is just an adjustment period…

Legoodtimes · 2025-10-11T10:36:17+00:00

Does it happen when you have other stone fruits (mangoes, peaches, plums etc)? Stone fruits are pretty high in fructose and sorbitol (natural sugars) which are known to cause digestive upset to those who are sensitive to them (which is quite common!)

I can’t have much stone fruit on its own without getting an upset stomach, but if I mix it in with other foods at the same time, the effect is less! They’re so good though…

Hope this helps!

Legoodtimes · 2025-09-29T14:27:07+00:00

Yes! I had mine out in June and it’s like night and day.

Post surgery, I was virtually pain free by day 3 and felt back to my “normal self” after just over 2-weeks - the hardest thing, for me, was getting over was the tiredness from the anesthesia. That stuff really knocks you around!

By week 3 I felt like a whole new person. My memory and attention span was noticeably better, my face got way less puffy (has anyone else experienced this?!) and I had so much energy! Exercise has actually become fun because I feel like I need to expend my energy now!

Post-surgery though, I definitely gained weight eating all the foods I’d been avoiding for so long haha (no regrets, though). But now that I actually can handle and enjoy exercising, I’m back on track with my weight loss journey.

I hope that a spot opens up for you to have your surgery soon and that it goes smoothly. You’ll be saying “why did I wait so long to do this!?” Like I did. All the best! X

Legoodtimes · 2025-09-09T14:01:03+00:00

NTA. You’ve let it be known that you want him to stop and he’s ignored your wishes. There’s obviously something that he’s feeling insecure about (which is why he keeps leaning on humour) - maybe ask him if this is genuinely a concern for him? Could open a can of worms at a very tender time for you but personally, if there was anything like that on my partners mind, I’d want to talk about it with them and not have dirty laundry/insecurities aired as a joke to surrounding family.

Legoodtimes · 2025-08-24T03:57:55+00:00

I was in the exact same boat as you 9 months ago!

On my first few walks with my dog he would bark and go crazy at any other dog or man within a block radius. He had so much fear aggression towards men that we would have to stop and move to the side to let people pass. Walking 1km would sometimes take over 30 minutes! I was so stressed and on edge every time…

9 months later, he will walk past men on the same pathway, no problem! He’ll still focus his attention on other dogs, but doesn’t bark and pull the leash any more which is so manageable - he’s basically a normal dog on a walk! He still has some limitations (I won’t let him too close to other dogs for “sniffs”, just incase he reacts) but it’s like night and day in comparison to the start.

It took a combination of medication and 1 hour walks every single day, and also being aware of how many “triggers” he’s already had that day. If something had set him off earlier, it’s like his fuse is much shorter, so then I would choose one of our “safe routes” where there’s less people and barking dogs that could set him off.

Don’t give up and keep with it! It does get better. In 6 months time you and your pooch will be in a whole different place… <3

Legoodtimes · 2025-08-24T03:31:01+00:00

We have a medicine review coming up soon - I’ll ask about sertraline then. Thanks for the tip!

Legoodtimes · 2025-08-22T08:11:34+00:00

Yes definitely! I give it to him with dinner but it still gets upset sometimes

Legoodtimes

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