Type 1 Exocrine Pancreatic Insufficiency - recent diagnosis

A

Alex_B

Well-Known Member
Messages
168
Type of diabetes
Type 1
Treatment type
Insulin
After a screw up of a lost stool sample and a receptionist thinking they are doctors and saying everything is normal, yesterday I finally got diagnosed with EPI after 3 weeks of not being told (complaint sent to surgery manager). This has completely thrown me, and I don't even know where to begin, I have been given no info, no support, just given tablets and been sent on my merry way.

I don't know if anyone else has this condition, I started taking the pills yesterday, and had really bad diarrhoea, worse than it's ever been. Up all night, all day, every time I eat. I have been taking them correctly but it just seems to be getting worse, as I am worried about going to sleep and eating. I've been distressed as doctors aren't open due to Easter weekend and bank holiday, can't go to the Minor Injuries Unit, don't want to step foot in a hospital at the moment! I don't know what to do, I'm confused, in shock, scared.

I feel useless, that I can't even take the tablets right, but on the other side, it's not my fault, it's the doctors who cannot be bothered to spend more than 5 minutes with me explaining what to do and how to take them. There's no information about!

Can anyone help me? I need to talk to someone, especially anyone who has EPI???
 
DCUKMod

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
Alex_B said:
After a screw up of a lost stool sample and a receptionist thinking they are doctors and saying everything is normal, yesterday I finally got diagnosed with EPI after 3 weeks of not being told (complaint sent to surgery manager). This has completely thrown me, and I don't even know where to begin, I have been given no info, no support, just given tablets and been sent on my merry way.

I don't know if anyone else has this condition, I started taking the pills yesterday, and had really bad diarrhoea, worse than it's ever been. Up all night, all day, every time I eat. I have been taking them correctly but it just seems to be getting worse, as I am worried about going to sleep and eating. I've been distressed as doctors aren't open due to Easter weekend and bank holiday, can't go to the Minor Injuries Unit, don't want to step foot in a hospital at the moment! I don't know what to do, I'm confused, in shock, scared.

I feel useless, that I can't even take the tablets right, but on the other side, it's not my fault, it's the doctors who cannot be bothered to spend more than 5 minutes with me explaining what to do and how to take them. There's no information about!

Can anyone help me? I need to talk to someone, especially anyone who has EPI???
Click to expand...

Alex, I don't have EPI, but I would ask you to consider calling your Docs out of hours service. They will have one. It may not be provided by your own surgery, but their website or telephone line will give you information. Alternatively, there's 111 who could be helpful.

I know for some conditions, things seem to get worse before they improve. That certain you happens with thyroid conditions often.

Please don't think I'm saying what you are experiencing is just one of those things. I'm certainly not. Please do talk to someone Alex.

The only other potential would be to consider deferring properly starting your meds until Tuesday, when surgeries open again, but that would have to be your choice.

To be clear, I am NOT telling you to change your medication regime. I can't, nor can anyone else here. I'm just trying to outline what I see as the options available to you.

I do hope you can start to feel better soon Alex. This has been going on long enough.
 
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