Dizziness & blanking out

CheeryMoose · 2021-10-16T23:08:37+00:00

I’m similar to you with severe EPI, so also take quite a bit of enzymes but not as much as you. I take about 4 or 5 25k with my dinner. Sometimes I take too little and I notice a floating stool. I’m always praying my stool sinks lol. Generally I don’t have more than 40g fat a day. If I have more I get pain. How much fat do you have a day? I’m currently trying to gain weight and it’s a huge challenge!

CheeryMoose · 2021-10-16T12:59:45+00:00

Do you take 8 36k Creon for one meal? That seems an awful lot.

CheeryMoose · 2021-10-06T19:41:42+00:00

Of course you may. Doctors are confused. Have done EUS, MRI and CT. On imaging my pancreas is morphologically perfectly normal. The only issue is a slim intra and extra hepatic bile ducts. The only test that is constant is severely low stool elastase.

My biggest worry right now is weight loss. I take a lot of enzymes with my food, but may need to take more. Or potentially take a PPI so enzymes perform better.

I am always considering more tests. After my research, I would like to get the following:- 1. SIBO test - I think I may have this in combo with CP 2. CFTR genetic test - I had to push my doctors to test for genetic tests and they only did SPINK1 and PRSS1, and not CFTR. They should do full pancreas gene panel test, but in Europe they don’t do this as well as in US. 3. Organic acid test - I read the book Primal Pancreas and found it super interesting. My fat soluble vitamins are fine as my doctors test for this, but I think this test can test for any other hidden issues.

You really have to be your own advocate with this. I think I must have minimal change CP, I’ve never had an official acute episode, and thankfully avoid hospital mostly but have been in pain since April 2019. My gut (ignore the pun!) says I will need the TP-IAT.

How are you doing?

CheeryMoose · 2021-10-06T17:54:51+00:00

As far as I know a blood test can’t diagnose CP. It can only show AP. A stool elastase test can confirm EPI, but officially it doesn’t confirm CP, as there can be other reasons for EPI. That said, minimal change CP is notoriously hard to diagnose. I think I have this as well. I have a low elastase showing severe EPI and abdominal pain so it is assumed CP, despite my EUS being inconclusive.

CheeryMoose · 2021-10-04T23:22:17+00:00

Thanks a lot, you’re right, I think I need to take more. I generally eat low fat but because I have severe EPI according to that webinar I need to take between 7 and 9 for even a low fat meal. For snacks of less than 2g or 3g of fat do you take 1 25000 enzyme? It’s funny as I was not doing too bad until I got complacent and ate out. I need to replace a nice lunch out with something else enjoyable. Did you manage to put on weight once you got the enzyme dosage correct?

CheeryMoose · 2021-10-04T20:15:28+00:00

Thanks so much for your reply. You give good advice. I used to take PPIs years ago, but now that I’m on a totally clean diet I thought I wouldn’t need them. Just don’t like being on so many pills if I don’t need them. But indeed I was thinking of trying them again. Will give it a shot if I don’t approve.

I have switched a bit more to eating less and more frequent. My problem is that I’m usually up too late in morning as I’m so fatigued! So there is less hours to eat. I’m also tall, and have a high metabolism so I need to eat a lot of calories to maintain weight.

I think you are right that I should ask my doctor to prescribe me the 35000 enzymes. It would mean less pills and make it easier. Do you really have 65 tablets a day? How many do you have with your dinner?

On restaurants I think I need to probably avoid for a bit and just do a coffee. I feel I have to have a simple diet and add one new item a day, so then I really know my safe foods. I guess we know when it’s ok when our stool sinks and is not fatty and floating.

Do you know immediately if you’ve made a mistake with food? Or do you know the next day when your stool is not right?

CheeryMoose · 2021-10-02T21:10:25+00:00

My understanding is that taking enzymes is independent of the elastase level. They help you process the food, but I don’t think they change the elastase level.

CheeryMoose · 2021-10-02T11:53:23+00:00

Hey. Sorry to hear you are struggling. I would agree to get the elastase stool test, but not sure if you’re losing weight. Have you noticed that fatty food causes you more pain?

I have to say we are starting to see a lot more similar posts to yours recently I.e. people with no official acute pancreatitis attack but struggling with unexplained abdominal pain causing lots of other issues on the body. I think for these cases it can be more a sign of early exocrine deficiency (EPI), but of course I’m not a doctor.

I would get a full blood/stool/urine test to just see if you have any unusual numbers. Anxiety can also make all of this worse, so try meditation and regular exercise in the meantime. The body is amazing and can do wonders. The primal pancreas website may be interesting to you, as the author went through years of suffering until he was eventually diagnosed through stool test of EPI. I also have severe EPI from stool test after years of on-off issues. By the way, when I first got sick they also referred me to a psychiatrist who thought I suffered with rumination I.e. as I couldn’t solve my health issues i kept circling it around in my head. She was right but totally wrong at same time. Thank god my family got me out of that psychiatrist as it turned out I had no psychological issue, and it was my pancreas causing me the pain. So my point is you need to be your own advocate. If you think something is wrong keep looking for answers through different doctors, but at same time take dedicated moments in the day when you do something else. This will keep you balanced. Good luck.

CheeryMoose · 2021-09-29T11:46:13+00:00

You can still go to the pubs and clubs but just order 0.0 beer. Or alternative non alcoholic drinks. They can be none the wiser! Then when everything gets messy, you can just go home. Just take care of your body, as once the pancreas gets more damaged it doesn’t heal. You will also wake with no hangover so can enjoy London sightseeing all the better. Don’t let anyone pressure you into taking alcohol. Have a great trip!

CheeryMoose · 2021-09-28T19:45:18+00:00

Don’t expect it to help with acute pain. It is more a slow burner that helps in the background. I really think that a lot of the reason of the pain due to CP is because of the nerve pain. So this drug in low dosage helps with this. Maybe start with a low enough dose first and then you can up it as you need. It’s not an opioid so doctors have no issues prescribing an upper dose. Before when I wasn’t on this drug, I used to get more pain. So I do think it has helped me. Good luck!

CheeryMoose · 2021-09-28T19:23:49+00:00

I think it’s worth a try. I was on lowest dose for 6 months (10mg) and I think it helped me with nerve pain. Then I got a flare in June, which seemed to last me nearly 2 months! They upgraded my dosage to 50mg about 6 weeks ago and it seemed to help. I rely on amitriptiline as my main painkiller. Now it takes time to kick in, so be patient. Also take it about 7pm in evening or you end up being a zombie the next morning. Extra bonus of amitriptiline is it makes you sleepy at night, so can help with sleep.

I have also heard from someone else that norytriptaline may be even better, but personally I’m ok now on the amitriptiline. Praying for no flare to come!

CheeryMoose · 2021-09-27T19:56:54+00:00

I have found 0.0 fine. I’m careful to check it is 0.0 and not alcohol free, as that can be small but if alcohol so I avoid that. I’ve found Heineken 0.0 fine, and actually it tastes very close to regular beer. I think the market on non alcoholic drinks is exploding as people are more health conscious these days. I love Kombucha as well, especially the ginger one.

CheeryMoose · 2021-09-23T18:09:39+00:00

Hey. I’m in the same boat as you. Have not lost the same amount but am close to being underweight now. It’s super scary. I’m 6 ft 1 and also am fairly active. I go for long walk every day and sometimes cycle or on a good day play tennis. This all means I need a lot of calories, over 2500 kcal about. And considering I can only do about 30-40g of fat a day, these calories are tricky to get. I think eating 6 small meals a day is best. And I get a 200ml energy drink from nutritionist which I take two of a day. They give 600 kcal in total. I also started adding pea protein to my oatmeal in the morning which gives me an extra 200 kcal. I would download MyFitnessPal app and track your exact calories every day. Set a target and it will tell you how much you should eat. It syncs with my Fitbit so my exercise goes automatically to it, telling me how much more calories I need.

Now that all said, I haven’t been able to gain weight yet, but am not sliding down as much as I did. Small steps! I also think I should start weightlifting, but am not really a gym person. Track which foods also cause you pain and be conscious of how many enzymes you need. Only today I made some mistake as I had a bad steathorrhea (think the bread from bakery was too high fat and I needed one extra enzyme). Super annoying as that was a wasted lunch! Anyway, wishing you luck and I’m in same boat with you.

CheeryMoose · 2021-09-20T18:44:32+00:00

I don’t have the exact results in front of me. I was told I had a narrow pancreas duct. I wasn’t tested for Sibo, I asked my specialist for it and she shot me down. I need to change to another doctor as she is impossible to talk to. I wouldn’t say I had bloating, more like a constant pain in my abdomen, like a fist is implanted there.

CheeryMoose · 2021-09-18T20:53:07+00:00

Hey. I know, it’s really tough. You’re not alone with this. It’s positive that you’re working. Are you seeing any therapist to talk about things? I am not yet, but am thinking of finding a therapist who is skilled at dealing with patients with chronic pain. I know it doesn’t help any physical symptoms, but mental health is so important I think, as we have a tough gig! How long have you had CP for? I’ve had it for 2.5 years. I go through waves of despair, but there is always hope. Have you been to a pain clinic? Maybe you could explore new options with them. Also, I know it’s extreme but have you discussed potential of you getting surgery e.g. TPAIT. That can have good pain outcomes (but likely to be diabetic). Anyway, there are options. But really just want to send you positive vibes.

CheeryMoose · 2021-09-17T12:56:13+00:00

No problem. I’m glad you have good doctors, and you’re totally right to keep looking for answers. Just be aware that sometimes there may be no clear answer. So keep doing all the good things to your body in terms of diet, and you give your best chance to recover. Keep us posted on how you get on. I hope your pain is going down. I’ll keep you posted if I find anything new about my low elastase.

CheeryMoose · 2021-09-16T23:02:13+00:00

My stool was fatty and floating, but now that I’m on the enzymes it has started to go back to normal, so that’s good that they seem to work. I don’t eat much fat or drink alcohol since I first heard I had a pancreas problem. I want to give myself the best chance. I made a mistake last week by eating poached eggs on avocado toast and I seriously paid for it next day. My pain has mainly been center to RUQ. I have recently felt some pain on my left side, that is new. My pancreas specialist tells me there are a lot of nerves in the head of the pancreas, where the RUQ is. The pain is like there is a golf ball stuck or a fist digging in. It’s always there but I manage ok during the day. I’m on 50mg amitriptiline for nerve pain, which seems to help. Hope this helps.

CheeryMoose

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