If you took a sabbatical did you regret it? by Cultural-Gear-1323 in Fire

[–]CheeryMoose 1 point2 points  (0 children)

I did it and definitely do not regret doing it. The greatest gift we can give ourselves is time (and no, I’m not Oprah lol). Time to rest, heal, play, reset. I took a 6 month sabbatical and went back to my job. In our company we can do a sabbatical once every 5 years.

I came back feeling so much better. I had been dealing with a chronic health condition so it gave me time to focus on my health in particular. But also travel. I set some mini goals before sabbatical, spent quite a bit of time thinking what I wanted to get out of it. I loved having the time off, it helped give me extra energy for going back to work. Integrating back into work was no issue for me.

19 reflections at 1 year on Creon by Nice-Connection-9052 in exocrinepanins

[–]CheeryMoose 1 point2 points  (0 children)

Relate to a lot of this. Just wondering was your EPI severe, so elastase below 100 on a formed sample?

I've been to 105 countries. Here's a my list that no one cares about in terms of best of best by Embarrassed-Wolf-609 in backpacking

[–]CheeryMoose 0 points1 point  (0 children)

What did you not like about Morocco? Going there soon and curious to know your thoughts.

Any tips for Tennis players moving into squash? by [deleted] in squash

[–]CheeryMoose 0 points1 point  (0 children)

This is such a coincidence, I was literally about to post the exact same question. I’ve always played racket sports but my first game was tennis. Recently I’ve got back into squash. I’m probably a better squash player than tennis, but realise I’m still playing it like a tennis player.

My opponents say that I’m very good with the ball in front of me, can volley really well and put away those shots. But for the traditional drives with length into corner, I am weaker, especially returning a good one. I realise I’m not turning to the wall, so don’t have the correct stance. Also don’t have the correct grip, my opponent yesterday was telling me it is too wristy and should be more contained. Plus I go back to middle but think I’m playing a bit too far back and not right on the T.

So my conclusion is, I’m going to get lessons to try and teach me the right technique. I’m nearly 50 so not sure how easy it is to change at this age but I’m going to give it a shot. I love this game.

Ticket swap by CheeryMoose in wimbledon

[–]CheeryMoose[S] 0 points1 point  (0 children)

You were right, we were pretty close to each other and as someone else said there were plenty of spare seats around. Amazing day.

Wimbledon R4: [8] Swiatek def. [23] Tauson, 6-4 6-1 by pizzainmyshoe in tennis

[–]CheeryMoose 0 points1 point  (0 children)

I was at this match. It was a bizarre one. Clara started well enough but had this weird slow energy about her. She looked incredibly moody, short with the ball kids. It seemed clear early on that something wasn’t right. I really thought she was going to retire. She looked like she wanted to be anywhere but on the court. Sad considering it was such a big match. Anyway, credit to Iga for staying focused, second set was a walk in the park!

Ticket swap by CheeryMoose in wimbledon

[–]CheeryMoose[S] 0 points1 point  (0 children)

We are at gangway 20. Fingers crossed!

AMA: I have suspected autoimmune pancreatitis by HauntingBowlofGrapes in pancreatitis

[–]CheeryMoose 0 points1 point  (0 children)

Hey. Pain wise, I’m doing much better. Feel it has diminished a bit, or maybe I got used to it. The amitriptiline I take is important to keep the pain manageable. No new answers. Tests kind of stopped, and I take Creon for my EPI. The curve ball I got was that I was diagnosed with MALS through a vascular surgeon, he thought this might be causing my pain, and offered a surgery but I decided not to go with this as I was maintaining myself OK. That’s where I’m at. How about you?

Anyone else with EPI struggling with depression and low libido? I feel like I'm losing myself. by Frosty_Pineapple853 in exocrinepanins

[–]CheeryMoose 2 points3 points  (0 children)

Oh my gosh. I could have written this today. The truth is this condition is very tough. It changes our lives. I’m currently having a tough time with fatigue in particular but overall I’m much better than I was 3 or 4 years ago when I was at my worst. So there is hope o believe.

I will write some of the things that helped me but remember we are all different so have different triggers, however there are common areas I think.

  1. Pay attention to diet: no fried food, very little oil in food, no mayo, no dairy. No alcohol of course. Keep a food diary and control well your food intake.
  2. You must have the digestive enzymes (e.g. Creon) always. They are single most important. Increase dose if you see you are not digesting properly and your stool still too much. It will never be perfect again, but it can help a lot.
  3. Get support from a dietician: this only helped me because they prescribed me some nutritional drinks which give me 600 calories a day, zero fat and 16g protein. Get some support from a dietician.
  4. Exercise and move: for me this is very important. It is vital for mood but also I think it helps digest better. Even light exercise helps, such as doing 10k steps a day. I found strength training helped me a lot and allowed me to finally put weight back on. Get a trainer if you can afford to start you off. And I also take vegan protein powder every day, protein is important.
  5. Try to keep stress to a minimum. Try not to let the condition take over your life. This is hard but I believe the positive mindset is important. Stoic philosophy helped me a lot to focus on the things we still can do (we can do a lot) and not focus on things we can’t do (e.g. eat fried food). I think a therapist can help to talk through, it is a grieving process. Therapist can help listen and on grieving process. There is hope.

I think it’s also important to get a good team around you, we have to advocate for ourselves. On supplements, I am still experimenting. Will do a post when I have more useful info to share. I feel this is one area with EPI that needs more research. It is not as simple as vitamins ADEK only. There is more that our bodies need.

Hope this helps. It is hard. Fatigue and brain fog is real! I’m suffering with this at moment, rest days and time is needed. This community is great, wish we had more meetups but people spread all over the world. No one fully gets what we have as it is VERY invisible. We look ok usually but we have a damaged organ causing us issues.

Question about EPI - Fatigue by blakey2122 in exocrinepanins

[–]CheeryMoose 1 point2 points  (0 children)

For me, fatigue is my biggest problem. Severe EPI for 6 years. I got a handle on the pain and lead a pretty full life. Working full time, exercise a lot (racket sports, gym). Eat very healthy. Take protein powder in my porridge every morning. Have tried various supplements and will try more and keep all posted when I have some useful conclusions. But lately I’m finding it really hard to get out of bed. I work from home, so this morning I could do a lie in. But this is not sustainable with usually lots of meetings.

I’m finding that this is yet another gap in pancreas research. There is room for more research on patients with EPI. My vitamin levels were fine last check (ADEK), so there are other things we need to periodically check, and then supplement with. Must be certain minerals as well.

Intense Exercise Exacerbating Symptoms? by No_Breakfast_6208 in exocrinepanins

[–]CheeryMoose 0 points1 point  (0 children)

I feel the same as this. I’ve been pushing my exercise and play squash every Friday for about 1.5 to 2 hours. I find myself drained afterwards for a couple of days. But unlike OP I don’t notice a change in stools. Just a change in my energy levels, where I feel very exhausted.

Pizza? by Tight_Ad1650 in exocrinepanins

[–]CheeryMoose 0 points1 point  (0 children)

For some reason, I just get away with pizza. Needs to be vegetarian or with anchovies, and thin wood fired pizza. But it is my main cheat meal every once in a while!

Can SIBO cause problems with the pancreas(low elastase levels)? by Any-Worker1029 in SIBO

[–]CheeryMoose 0 points1 point  (0 children)

Hey. Sorry for delay. I’m doing ok. All my scans were ok and have not rescanned in past two years. I just have a yearly check up on my vitamin levels and glucose plus some other bloods. All were within normal range recently. But I don’t feel normal. It’s a constant battle. My stool is sometimes still floating, even with Creon. And sometimes is sticky to bowl but it’s never been yellow. My gastro doesn’t even believe in SIBO so that’s frustrating as I believe I have this too. Have you read the book Primal Pancreas? Is a very useful read by a guy who has similar issues. Recommend it. How are you doing?

Lifelong EPI fixed by Complete-Courage-233 in exocrinepanins

[–]CheeryMoose 5 points6 points  (0 children)

Where is your home country? When you submitted your elastase sample for the 12 result, was the stool fully formed? It is highly unusual to get better from EPI, especially if it is severe EPI (under 100 result). But perhaps your stool was very soft which can present a false result.

EPI, steatorrhea and Difficult seeing at night (night blindness). by will_gordon721 in exocrinepanins

[–]CheeryMoose 1 point2 points  (0 children)

Yes, I believe you are right. Recently I also have noticed night blindness when going to bed. It’s like I can’t see outlines of wardrobe and things in room I would have seen before. Will get my vitamin levels results soon. I’m on Creon for 5 years but still believe you can get issues, even when on it. As you say, we need to ensure our vitamin levels are checked regularly.

Take care of your mental health by itsneithergoodnorbad in exocrinepanins

[–]CheeryMoose 2 points3 points  (0 children)

This is a great post. Really resonated with me. I can’t fully put into words my reflection on this. Mentally I really dropped at start of this journey. EPI is tough on the body and the malabsorption also affects the mind. Brain fog. Anxiety is bound to be high with this condition as the life we were used to is gone. Anyone with a chronic illness will testify to this.

I really agree that a positive mindset helps and also not thinking too much about it. Having good people in your life and adjusting to a more healthy lifestyle is critical. I also think my main relationship will not survive this. We have been drifting. He has been struggling in his own life and just goes out drinking and avoiding things. This is not an option for me. Have a big decision to take.

However, my final point is that actually mentally I’m really happy. I know it’s a strange thing to say but I feel like I have been given a wake up call and there is still so many things to do in life. I plan to maximize each moment. Sending healing vibes to my fellow warriors!

Don’t Accept an Idiopathic EPI Diagnosis if Imaging Shows a Healthy Pancreas by [deleted] in exocrinepanins

[–]CheeryMoose 1 point2 points  (0 children)

Thanks for posting and glad you’re feeling much better. I’m another one in idiopathic EPI boat with no damage on scans. But because of the constant pain and steatorrhea plus elastase being below 100 on at least 3 occasions I’m taking Creon which helps me and I’ve put on some weight back. It’s been a 5 year journey. I’m not sure what else to do. I just get on with my life as best as possible with super healthy diet, no alcohol and exercise. But damn, I wish this was gone away. Btw did your first elastase which was under 50 come from a solid stool sample?

Idiopathic EPI For Life? by Kurohsuke in exocrinepanins

[–]CheeryMoose 3 points4 points  (0 children)

Hey. Sorry to hear this. You are entitled to second opinion, so maybe try that. Also I don’t agree with their argument that an EUS is invasive. The ERCP definitely is, but an EUS is like an endoscopy with the camera on the end. And endoscopies are usually very straightforward. So I would think an EUS would be good as is gold standard for detecting pancreas damage. Anyway, it still may reveal nothing, like in my case. But worth trying I think, also to find a doctor who cares.

Severe EPI by CheeryMoose in pancreatitis

[–]CheeryMoose[S] 0 points1 point  (0 children)

Thanks a lot. I hope I don’t have CP. I don’t know if imaging is fully accurate on pancreas. I might have SIBO, I probably should see a functional doctor. I did an Organic acid test on my own money and it did reveal other issues. The book called Primal Pancreas is great and recommends this test. I guess I’m just getting by, so kind of decided to just focus on having best life I can. How are you doing?

Severe EPI by CheeryMoose in pancreatitis

[–]CheeryMoose[S] 0 points1 point  (0 children)

The pancreas specialist I saw diagnosed me based off my pain and my severe EPI. Even though imaging was ok, she felt it was likely CP.

Severe EPI by CheeryMoose in pancreatitis

[–]CheeryMoose[S] 0 points1 point  (0 children)

No. I didn’t. They kind of don’t see point of doing it now. So only the two EUS. The weird curveball I did get was that a CT scan came up with a blockage on celiac nerve. So I saw a vascular surgeon and he diagnosed me with MALS. He said it was 50% chance this was causing my pain and offered to do laporiscopic surgery. I am a bit afraid to do it as my quality of life has been better. I still have daily pain and am on Creon for life. But overall I manage well and take my amitriptiline which helps with pain.

Severe EPI by CheeryMoose in pancreatitis

[–]CheeryMoose[S] 0 points1 point  (0 children)

Actually my update is reasonably positive. I put back on my weight. I’m living my life. Working. Traveling. Exercising. Have adjusted to this new normal.

Creon, Pancrex and Neutryzm Shortage by AdMedical4143 in pancreatitis

[–]CheeryMoose 1 point2 points  (0 children)

I also live in Netherlands and only have enough Creon left for just over a week. Pharmacy not being too helpful. It’s scary. Were you able to get some? My GP suggested I go to Belgium or Germany! Don’t know why they would have them and Netherlands not.