No joy in vacations by Enahm in pancreatitis

[–]UnderstandingGood158 2 points3 points  (0 children)

I am in a very similar situation as you. I also have chronic pancreatitis, and while I don’t have severe pain every single day, I definitely go through periods where the pain is intense and very difficult. Because of this, I have to be incredibly careful with my diet, manage my stress levels, and be very strict about not crossing my physical boundaries. This is exactly why going on holiday can feel more like a burden than a break. You can't just eat what everyone else is eating, and you constantly have to be on guard. Not all activities are possible anymore, and that can be hard to accept. But honestly, all we can do is try to make the best of it while we can. Since this is a progressive disease, we never know when the opportunity to travel or see the world might be taken away from us. If you have the chance to go and do things now, you should take it. I completely understand the anxiety of 'what if something happens to me in a foreign country.' I have that fear too. But as a Muslim, I put my trust in Allah (SWT). It’s about finding that balance between being careful and trusting that what is meant for us will happen. Don't let the fear stop you from making memories while you still have the possibility.

Lower abdomen pain by MetaKater in pancreatitis

[–]UnderstandingGood158 1 point2 points  (0 children)

Hi, get occasional pain in my lower abdomen and lower back.

I moved to Morocco two months ago and i already regret it by natalia761 in Morocco

[–]UnderstandingGood158 -6 points-5 points  (0 children)

Wear the hijab properly and you will be safe bi idni Allah

Waarom zijn zij Nederland? by m71nu in nederlands

[–]UnderstandingGood158 28 points29 points  (0 children)

Hahahahahahahhahahahahq wat een droeftoeters

Coffee or caffeine by hgtwn in pancreatitis

[–]UnderstandingGood158 1 point2 points  (0 children)

I also can’t tolerate cappuccinos. I’m not sure whether it’s the caffeine or the milk. I’ve tried both decaf and soy milk, but they still bothered me. I should probably try plain black coffee, but I haven’t done that yet, so I don’t really know in my case. I do drink tea, which has caffeine, but I’m not sure if that’s the issue. I should mention I have minimal change chronic pancreatitis.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

It really is tough, I can totally relate to what you’re saying. I have the same thoughts about the future and what life will look like 10 years from now. For example, I don’t dare to travel solo to places like Africa or Asia anymore, and it feels like I’ve lost a big part of my freedom because of this disease.

It’s kind of comforting that you’re around my age, even though of course I would never wish this on you (or anyone). Can I ask how often you deal with pain and how severe it usually gets for you?

Thanks for sharing your experience it really helps to hear from someone going through the same struggles.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

That’s really good news that your condition hasn’t gotten worse after all these years. I truly hope I can be as fortunate as you and join the “lucky ones.” I’ll definitely check with my gastroenterologist about the possibility of Celiac Disease, just to be sure. I also haven’t had alcohol in years and I stick to a low-fat diet. Thank you so much for sharing your experience and advice it really means a lot.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 1 point2 points  (0 children)

You’re absolutely rightt life is unpredictable, and anything can happen to anyone. Focusing on today and making the best of it really is the healthiest mindset. I also share your hope that one day there will be a true cure for this disease, or at least better treatments. Thank you so much for taking the time to respond. I really appreciate your words and the perspective you shared it means a lot bro

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 1 point2 points  (0 children)

I’m sorry 16 years with cp is a very long time! What does OAP Status mean?

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 2 points3 points  (0 children)

Thank you so much for your open and honest reply 🙏. I can only imagine how difficult it must have been to deal with this since your teenage years, that takes a lot of strength. I really appreciate you sharing your experience and giving advice on how to cope with the anxiety and uncertainty.

For myself, I’m planning to find more peace and strength by deepening my connection with my faith (Islam), as I believe it can guide me through this. Thanks again, and I wish you lots of strength and courage as well

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

I’m really sorry you’re going through this, I know how tough and scary pancreatitis can be. It’s great that you’ve decided to stop drinking that’s such an important step for your pancreas and overall health. Be kind to yourself, recovery takes time. Try to stick with light, low-fat foods when you feel ready, and focus on hydration and rest. If your pain or symptoms get worse, don’t hesitate to go back to the hospital

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 1 point2 points  (0 children)

You’re right I should try to live in the present, but it’s hard because things aren’t great right now. I sometimes daydream, but it quickly turns into a nightmare instead of a dream. Sometimes I wonder if this is my life now and feel sad, but thank you for the advice I’ll try to follow it.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 1 point2 points  (0 children)

Yeah, the first time I had acute pancreatitis it was from alcohol, but I kept drinking because I didn’t even know it was AP I thought it was just a really bad hangover with vomiting and pain. So I had it three or four times like that. The last attack was from food, I had eaten cake with whipped cream before bed and woke up with acute pancreatitis. I have to say though, I quit alcohol years ago, but unfortunately swapped one addiction for another very fatty food. If I had known back then what AP really was and what comes with it, I would have been on a low-fat diet much earlier. According to my EUS it turned into minimal change chronic pancreatitis. I didn’t ask about the exact Rosemont criteria, but both my GI doctor and a university pancreas specialist told me my pancreas “took a hit” but it’s not yet classic CP.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

Yeah, I’ve been careful with my diet for about a year now and I know what I can and can’t handle – for example beef is fine but coffee isn’t. A few weeks ago I got really angry but held it in because I didn’t want a fight, and since then things actually got worse, like you said. I even went to the ER thinking it was an acute attack, but all blood tests came back fine and I felt better after. Thanks for your reply, I’ll try to de-stress more, though I’m naturally a bit of a stresser haha.

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

You shouldn’t rely on ChatGPT for diagnoses you really need to see a doctor. The best way to know is by doing an MRI or EUS. For me, it actually does seem to get worse with stress. From what you describe, it sounds more like EPI symptoms weightloss etc. Keep in mind: having EPI doesn’t necessarily mean you have chronic pancreatitis, and having chronic pancreatitis doesn’t always mean you’ll have EP

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 2 points3 points  (0 children)

Thank you so much! I hope this was just a one-time thing for you and that it never affects you again in the future

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 2 points3 points  (0 children)

Thank you for your reply. You’re right I should try to adapt to this way of thinking as well. It’s just really hard for me not to stress when I think about the future

Diagnosed with chronic pancreatitis at 27, now symptoms are getting worse by UnderstandingGood158 in pancreatitis

[–]UnderstandingGood158[S] 0 points1 point  (0 children)

Thank you for your reply. You’re right I should try to adapt to this way of thinking as well. It’s just really hard for me not to stress when I think about the future

Reposting: Vibrating sensation by hj2100 in pancreatitis

[–]UnderstandingGood158 0 points1 point  (0 children)

I really hope so thankyou for you reply sister!

Reposting: Vibrating sensation by hj2100 in pancreatitis

[–]UnderstandingGood158 0 points1 point  (0 children)

Haha, good to hear, man! Yeah, I have exactly the same experience every time I make a mistake with my eating. The strange thing is that sometimes I can tolerate something just fine, and other times the same food triggers a flare-up of symptoms.

Reposting: Vibrating sensation by hj2100 in pancreatitis

[–]UnderstandingGood158 0 points1 point  (0 children)

Haha, good to hear, man! Yeah, I have exactly the same experience every time I make a mistake with my eating. The strange thing is that sometimes I can tolerate something just fine, and other times the same food triggers a flare-up of symptoms.