Hello friends

[Newthaniel88]

So I'm not even 40 yet and I sometimes catch myself feeling like there's no way I can handle this cp pain some days. I'm 6 years into this disease and I tried at least 4 different anti depressants. I was on cymbalta for about 3 or 4 years and I think it did help with the pain and depression for a while until I started having lots of sexual disfunction. I have been only taking creon 24k w/2 per meal for around 6 months now but I have been in a sort of manic/anxiety mood in and out of a flare up for the past month but I did get a new psychiatrist and she prescribed me wellbutron. The very next day she called and said that wellbutron does have a chance of causing pancreatitis. Since I'm currently feeling enough pain I told her I don't want to put myself in more of a flare and take the chance of the meds making things worse. So she put me on Strattera and hydroxizne for anxiety and now I'm reading this med can also cause libido, erectile and other dysfunction. I also have enough of this and would not like anymore. If anyone or other males have any help or suggestions for better management of pain and if anyone knows if these meds help or actually work? I know these meds take weeks to have any effect and I realize that nothing is quick and easy anymore and it's hard to be patient while I'm currently in pain now not 6 weeks from now when they start working and I know this is a difficult disease to treat but I feel like wtf it's 2025 and all the doctors can recommend is better diet and they all seem like I'm healthy when I used to work 40+ hours of physical work in construction and now struggling just to stand for 4 hour shifts 3 days a week. Any tips or advice would be helpful. Thanks

[Marktime]

can I ask you a question, how is your digestion? My experience is that if my digestion feels solid then it's close to normal as possible, then I have a lot less pancreas problems and a lot less depression and fatigue. I had nutrient deficiencies from not digesting my food and from not having the Creon dose correct, It caused all kind of problems fatigue depression brain fog.

[Newthaniel88 in reply to Marktime]

My digestions not horrible so I thought. I can sometimes eat a small low-fat snack without any enzymes but sometimes not so much and feel pain not long after the snack. For the first time since I was diagnosed I haven't weighed as much as I do now. Almost 200lbs which is good but also not best when I been depressed and eating my feelings away. I have lots of bloat and gastritis and I definitely noticed I feel better the less I weigh. I'm most likely not active enough when the weather's better I usually take the dogs around the block a few times a week or gardening

[Marktime in reply to Newthaniel88]

It is a daily struggle, sometimes I can eat pretty normal for a few days, then i will start having pain after eating, It will usually last for a few hours. When that starts happening I usually try to eat smaller meals for a little bit, and it usually resolves. If it doesn't, sometimes i will skip eating and have the Glucerna meal replacement or something similar for a day.(or eat three very small easy to digest meals) It usually resets my guts and i get a while where I'm more normal. That's kind of how it is for me, And then the other major thing is what I eat if I eat meat and potatoes and vegetables I do pretty good but if I eat snacks, cookies, chips, even if they're high quality organic healthier fats, I can eat a little bit but if I eat like I want to I will suffer. I learned this the hard way over and over. ☺️

[Newthaniel88 in reply to Marktime]

I know exactly what you mean. I struggle with my portions and should be greatful I'm even able to eat half a burger instead of the whole thing in one meal. I used to be great at fasting but not lately and I get stuck in this cycle and go through these phases of doing good eating healthy and then not and learned that I have trouble digesting certain sugars if it's not stevia or cane sugar and a lot of those protein drinks don't sit well with me either. I notice that sometimes before or after a flare I get cravings for greasy or probably higher fat content I'm assuming from not digesting properly. I have a yearly endoscope Friday so hopefully no significant changes but my legs consistently cramp up from work. I drink lots of water all day and it seems like I'm always dehydrated do you have this issue too?

[Namaste24]

Hello,

Castor oil packs on my belly really help. I agree about the digestion issues making CP pain worse. I don’t have a lot of suggestions yet because I am new to my CP diagnosis and am going to specialists over the next couple of months to get fully evaluated and discuss options for pain.

I completely understand your situation and I’m in the same boat. Maybe it helps a little to know that others are suffering too.

I’m praying more research and understanding comes soon from the medical profession.

Mission-Cure is doing a great job helping with that.

[nanagizer]

How did they diagnose you? I am always curious about that because my gastro specialist (Cedars Sinai) has run ALL the tests and still not formally diagnosing me with CP but I do have pancreatic divisum which can cause problems and CP eventually. I am 69 and been suffering with gastro pain and issues for over 10 years. They did find minor "stranding" in my pancreas from the EUS but said anyone my age would have a bit of that. He won't do another EUS and it has been 3 years. I suffer daily and do everything I can to try and get my mind off of it. Just about when I was ready to go jump off a bridge he prescribed me ativan and it has helped tons just to get my mind out of this health anxiety state. I see him again in early April and am hoping they will do more testing to see if things have changed. I know my pain is from my pancreas and my digestive issues are related to that at as well. I also know there is nothing they can really do for me other than what I have been doing for the past 5 years and that is small, low fat meals, tons of hydration and trying to stay positive. I also try to stay as active as possible just to keep my mind busy and OFF this physical discomfort I live with 24/7. I am always slightly bloated and have a hard time holding my stomach in because of it. I just always feel like there is a lead balloon in my belly. My pain is almost always in my back but I can tell it starts in the front and lands in my back. My heating pad in my recliner is my happiest place to land at the end of the day. I know the ativan isn't a cure all, but it sure has helped me try to live my best life as I have sooooooo many blessings (7 grandkids) to be thankful for and enjoy! God speed to you all and lets just keep praying these "research doctors" can find a cure for this!

[Newthaniel88]

I haven't had much relief from castor oil in the past but I can agree that my heating pad is my best friend. Back in 2018 I kept having excruciating abdominal pain that was on and off for a few weeks and I can't count the amount of hospital visits and in the beginning just small lesions and scaring on eus or ct scan a majority of the time they would say well blood work looks normal so we're not sure why your in pain until one visit they checked my amylase and lipase levels were way elevated and I must have been in middle of flare for it to show because they were usually normal. I had a few celiac plexus blocks and the first one I thought was effective but the last few haven't been. I wish I would have found these super greens organic drinks when I first got diagnosed with acute pancreatitis my nausea was uncontrollable and couldn't eat or hold much of anything down. About a year of continuous flare ups it turned to chronic pancreatitis and one technician said I had scaring of 60 yr old pancreas. The drinks do have probiotics and upset my stomach in the beginning but they help a lot now especially when I don't feel well. Or bio-lyte it's pretty expensive but has kept me hydrated and saved me a few hospital visits and I believe it's doctor recommended and made from monk fruit. Most of my pain used to be abdominal and then turned referred in my upper back and left shoulder. Lately it's been mid to lower back and I sometimes feel what seems like inflammation building into my neck and head area before a flare but I found out that the combustible form of cannibas almost helps calm my stomach and me immediately. None of my doctors are willing to admit it helps and definitely don't recommended smoking but I don't get the same relief from edibles or the vape.

[Marktime in reply to Newthaniel88]

Newthaniel88, This sounds like me, I had the pain in the back of left shoulder, it would keep me up at night, it was incredibly painful, it would last long, days. And had it for months, It was before I got on Pert. and yes i do get dehydrated no matter what, once in a while I'll feel better and I will get thirsty and drink all day and have seemingly normal urine output, i don't know where it all goes. I use edible RSO oil for pain and nausea with a live resin vape for instant relief.