Hi everyone! 👋 I hope you're all having a good week.
Today, I wanted to talk about handling flare-ups. When you're in the midst of a pancreatitis flare, it's hard to focus on anything other than the pain. Is there something you've found that helps you get through it, like a specific routine or even a distraction, like your favorite Netflix show? Feel free to share below. 💙
Oh this is so topical! You seem to instinctively know what's most important to me at the time and post your topics accordingly!
With an exceptionally busy month ahead, at the beginning of October I thought "I'll only get through all this if I stay as well as I've been in September!" and then promptly got a SIBO flare and a mild but enduring pancreatitis flare (and 5 migraines in 3 days)! I have survived and earned some money but it has been tough! The things I've used to get through are:
* Remembering you are so kind and caring and there for us: it is one of the things that helps a lot!
* Lying/sleeping on my right side to drain my pancreas.
* Resting/sleeping as much as possible.
* Walking (that's so good for health generally).
* Drinking 8 litres of clear fluids only for 48 hours.
* Careful use of NSAIDs (ibuprofen) and low dose prednisolone when particularly bad.
* Minimal food intake and going back to clear fluids only, if it worsens.
* Taking supplements (and the NSAIDs and other meds) with small amounts of food and then resting my pancreas afterwards - no food; clear fluids only for several hours to give it chance to recover.
* Increasing my Creon to food ratio.
* Trying to manage my external stressors and doing small things that are good, to keep my mental state as positive as possible.
* And in extension to that, keeping in touch with good friends and listening to their things to help forget about my problems.
* Doing small good deeds and being kind to others to get a sense of not just being useless and ill.
* Weighing myself with increasing numbers of clothes on and extra things in my pockets, so it doesn't look like I've lost much weight (you can't beat a bit of denial in a health crisis)! "If at first you don't succeed; cheat!" I've got my boots on standby! 😁
* Spending time with my animals and gleaning comfort from being with them.
* Asking the people I do work for (I'm self-employed) if I can change my hours around if necessary to suit me, so I can manage my body better.
* Being kind to myself and giving myself a bit of a break from my usual pressure to get things done.
* I'm not into shopping or "retail therapy" usually, but I've bought myself a lovely coat (second hand) with the money I would otherwise have spent on food, to turn it into a positive.
* Trying to think carefully and act proactively about the additional supplements I need, to balance the lack of food. I've burst a blood vessel in my finger (more vitamin C required) and had a few attacks of vertigo (more B9 for me) but otherwise I have been reasonably OK. I have automatically increased my Ca++, Mg++, D3 + K2 to minimise bone depletion - and have made sure I do plenty of walking and physical work to encourage bone density, and I've tried to keep my K levels up - I soon get cramp if I don't! The scariest one is haem iron but I'm eating good quality meat whenever I can and doing OK so far. 🤞 All other basic vitamins and minerals are supplemented to a good level, including daily B12 injections, anyway.
* I use heat packs/pads and a heated massager to ease the pain in my left top quarter.
* Playing word search games on my phone, watching short video clips, and listening to podcasts help to distract me and get me to sleep quickly.
I must get to work now but if I think of anything else I'll add it in later. 😃
Looking forward to hearing from you and others for more suggestions.
Without sounding daft what does a pancreas flare up feel like? As only recently diagnosed this year I know very little. I do get stomach pain but that could be microscopic colitis waiting to be confirmed
Sorry for the delay in replying - I've only just seen this!
It can vary quite a bit between people, depending on what is causing your CP.
My CP is idiopathic (no known cause) and it characterised by pain, in varying degrees in the top left quarter of my trunk, especially my left shoulder.
If I have a really acute flare it's agony and I just want to pull my arm off, to get rid of the intense gnawing pain in my left shoulder; I sweat and shiver, and the area of my pancreas becomes red and swollen. So far I'm lucky and it hasn't made me sick but I do feel like I've been poisoned.
These bouts are rare for me and usually only last from a few hours to a few days - mainly because I immediately rest, lying on my right side, drink clear fluids only (don't eat) and take anti-inflammatories.
There is then everything on the scale from this to being totally OK.
I've had a lower grade flare since the beginning of October but it only briefly got to the sweating and shivering stage - and I took it super seriously then and other than that it's just been grumbling.
Curiously, a low grade CP flare only shows itself as translocated pain in my left shoulder and back - it can feel like someone is jabbing me in the back (or less often the front) with a knife and a sort of gnawing pain in my shoulder. My guts themselves aren't too painful, but that might be because I drink rather than eat and if I do eat I have a small amount of something nutritious (usually plus supplements and meds) with lots of Creon. I then wait until my cranky panky feels better again before I try anything else. I try to rest it more than eating so it gets a chance to heal. This means my guts don't have too much to moan about anyway! 😃
So far my longest flare has been about 6 weeks and I'm already getting better with this one so should be OK soon. 🤞
Good luck with getting your diagnoses and treatment - they do help you manage things and then look forward again. Best wishes!
Sounds awful and thankfully I'm okay. By your description doesn't sound I've had a flare although I do get the sweats now and again but with other things going on who knows? Wishing you a good recovery
A bad flare is a bit grim, and mine are nothing compared to some, but if I act swiftly I can usually limit them. Not everyone gets them and hopefully you'll be lucky. 🤞😃
So far I've had the sharp ones a couple of/few times a year and the longer grumbly ones less often than that.
They don't really worry me now as I know I will get over them and can put weight back on once I do so it's not a problem. And my head is always clearer if I don't eat (food never really agrees with me) so I enjoy that side of it while I can. 😃👍
📣 Discussion Topic: What obstacles did you run into looking for diagnosis support for your pancreatitis, if any?📣 Discussion Topic: If you had to visualize your pancreatitis in a picture, what would it look like?What are some easy, low-effort hygiene products you use during a pain flare-up? 📣 Discussion Topic: How did you find out your pancreatitis was chronic?📣 Discussion Topic: Introduce yourselves and share a little bit about who you are!
