I've been diagnosed with acute necrosis of the pancreas of the last 10 weeks.it started with severe
Posted , 7 users are following.
Well in d begging I had severe abdomen pain with smoderate back pain(all over back and shoulders a side pain)my worry now is I have no abdomen pain just severe middle back pain sometimes the shoulders also,like a stabbing pain,I'm seeing a surgeon this week to see will the nercrotic part of my pancreas be drained?.my main worry is why do I have all this back pain and none in my abdomen,I'm worried sick its cancer,could anyone please tell me if it's normal with acute necrosis pancreatitis to just have stabbing pain in my back.please I'm desperate.I'm 39 with 2 young boys who need their mammy,any suggestions atall wud be greatly appreciated.Thanks all.
0 likes, 23 replies
vedawms denise68918
Posted
I don't really have anything to add, except that you might want to join Living With Pancreatitis group on Facebook, too. There are a lot of other folks who might have ideas.
I do hope you feel better soon. Xx.
vedawms denise68918
Posted
Hello Denise,
In my opinion, you should be in the hospital where they can help you get your pain under control. The back pain is unfortunately part of the pain. I've never actually had "abdominal" pain, but I have had s lot of pain in my left ribcage bones, in my entire rib cage, in a spot on my back below the shoulder blade (called "through and through" because you can feel it in the front and back), AND the super painful lower back pain that never goes away. I expect the stabbing pains are from the necrosis, and I've had that from pseudocysts.
I do think that you are in the middle of an active flare, and if you have necrosis, this is not something you should be dealing with on your own. It can become dangerous very quickly.
If it makes you feel better, I've heard that people who develop pancreatic cancer experience less pain than patients with chronic pancreatitis. The chances of this being cancer are low, but that doesn't make your situation any less serious. Necrosis can be deadly.
Can you please go to the hospital and try to find a way to meet with your surgeon there? You need to be admitted.
Thinking good thoughts for you. Xx.
denise68918 vedawms
Posted
Sorry vedawns only seen this post now,can you read my previous post on my visit with d surgeon,do u still think d same about me being in hospital after what she said to me,she seems to be under d impression that its going to resolve on its own.I don't no,I'm flumoxed by it all,I'm none d wiser after my visit than I was before I went inš°thanks for ur reply but please read what I said and cud u advise me wheater what se did was enough.I'd appreciate it,thanks.
vedawms denise68918
Posted
Hello Denise,
Sorry, I should have responded before your appointment, but it sounds like you did very well.
Consider it a good thing that (for now, anyways) they do not want to insert a drain. Let's hope the "wait and see" approach allows the fluid to reduce further. (I also have a fluid collection that I am watching.) You may wind up needing surgery at some point, but for now, hang in there.
Definitely make use of your Oxycodone, but only take it if you need it. It can be very hard to get more. Keep your appointments with your pain management team.
You mentioned Gabapentin. A lot of people use it for nerve pain, but it doesn't work for everyone. It didn't help me much, but it didn't hurt me much either. I would suggest you give it a try. It may take quite a while and a series of increased doses before you notice anything. You should read through the side effects so that you are aware:
https://www.drugs.com/sfx/gabapentin-side-effects.html
and patient reviews:
https://www.drugs.com/comments/gabapentin/
As for the pain, if the doctor thinks you have an acute attack happening, you may want to restrict food for a while. Clear liquids like broth and jello should be easiest for you. If you vomit, do not eat anything until it calms down (a day or two), but try to sip water. If you feel up to it, sip on the Ensure. It's better to lose a few pounds than to rush eating and upset your digestion.
Will you see your doctor at the MRI? I would assume not, so you may want to follow up with a phone call to ask about the digestive enzymes. They make your pancreas not fight as hard to get nutrition. You don't need them urgently, but they are important and can help you gain weight back. Also, ask your doctor for nausea medication if you need it.
Adjusting your diet is the biggest thing you can do to calm things down longterm (other than surgery). Low fat, high protein foods, like chicken, fish, rice, cooked vegetables are best. Avoid spicy foods and alcohol at all costs. Small meals throughout the day are easiest. Avoid hard foods like raw vegetables and apples, as well as red meat and processed foods.
Don't stress about the blood tests. You will have results soon. For now, focus on not upsetting your stomach and on resting. A heating pad really helps, as can curling into a ball. Just rest as much as possible.
Please remember that if you cannot handle the pain or if you start vomiting, you should go to the ER / A&E. I really do hope you feel better soon. You still have a long road ahead of you, but let's hope things calm down soon.
Take care,
Veda
denise68918 vedawms
Posted
thank you so much for your advice I have been doing all that you said regarding food and rest.I will buy a heating pad today and as u said if it gets that bad iwill go to a&e,but they just send me home,they are clueless,but if im that bad I will refuse to leave.aalso I got 2 hrs sleep lastnight and when I woke up my knees and hands are stiff and very sore ,is that common?.also d surgeon said to get my mri in 2 wks and then he will see me in 4 wks,she wud hardly leave me that long if she seen cancer on d ct wud she???? sorry for offloading on u but I really appreciate all that you say to me.eternally grateful,denise.x
vedawms denise68918
Posted
I spend a lot of time in bed with my heating pad. It really does help a lot, but be careful not to burn yourself.
I can't explain the stiffness. It could be that your hands and feet are swelling? That is concerning if it continues to get worse. Try to drink more water and see if it helps.
I really wouldn't worry about cancer. in the 13 years of being sick, and knowing thousands of people online, I only know of two who had cancer. It seems like those people don't suffer nearly as much as we do. I would put it out of your mind, if you can.
Focus on resting and staying hydrated. That is the best thing for you. (It's also what I am doing right now.) You may still hurt a little, but hopefully things will improve a little... it can take a while to recover from an attack, so be kind to yourself. in a couple of days, maybe try some soup broth.
Keep me posted on how you are feeling.
denise68918 vedawms
Posted
thank you xedawns in regards to ur advice on d heating patch,I put 1 on yesterday and I was amazed at how much it helped,didn't get rid of all d pain but it really made such a difference thanks to you.Sorry ur in pain urself hopefully u will feel better soon.Regarding dcancer I'm just trying not to think about it so much its driving me crazy.I think when your in severe pain one just thinks oh it must be cancer,so now with d heat patch my mind is not thinking so much.I'm drinking lots of water and tried a little fish today with small tomatoes and that was ok.but I'll just keep up with d water for a few days.as for d joint pain in my hands and knees and ankles itold d surgeon about it and she said maybe its bc I'm not getting any vitamins or nutrients and that made causing it.?. when u say its concerning how do u mean? im gonna just keep my routine up,i.e. water ,vitamins and broth and see dos it go ,I hope u feel better soon.and thank you again for all ur help u really helped me with advice and my worries regarding cancer hopefully I'll no soon ,take care and mind urself like u advised me,I wud have been lost without all u have done for.thank you.xxx
vedawms denise68918
Posted
Hi Denise,
I am glad you are getting some relief with the heat. I spend a lot of time with my heating pad. That is why I suggest you get an electric one instead of the disposable kind. It's a better value and more effective.
Regarding your pain and stiffness in your joints, I would worry only if they start swelling up and retaining fluid excessively. You should ask your doctor to check what vitamins you are low on.
For now, I would suggest taking 1000 mg Vitamin D every day, and get a good multivitamin. Vitamin D can also help reduce pain, especially bone and joint pain. It will also keep your hair, skin, teeth and nails more healthy. Pancreatitis can be very hard on your body, and vitamins help.
Until you meet with your surgeon, just take it easy. The back pain you are feeling is likely coming from the necrosis, and hopefully that can be resolved soon with your surgeon's help. Exercise can make things worse, so just rest as much as you can. Eat when you feel ready to, in small portions, and keep drinking your water and Ensure.
Feel better!
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