Reality of the disease

Posted , 5 users are following.

this is one of the least researched diseases and yet the pancreas had such an important role in life.

When it goes wrong at any level. It is clear that the doctors only know the basic questions ie do you drink the question you get asked a thousand times.

Reality that they don't tell you is how this will change your life and how much pain you will be left in.

Without the use of sites like this a lot of us would be left feeling alone and like no one believes you.

And I have been through it and having had a close call and left suffering the after effects from the last attack I have found the only way I have stayed informed and sane is due to the help from here.

We share our knowledge and experience to try and help each other and that I am grateful for

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7 Replies

  • Posted

    Robin I agree for the past three months I have felt all alone and felt like there was no help but I found this site and feel a lot better that I am not the only one struggling with getting better from an acute attack I had in Oct there still don't seem to be any answers as to why I had it but the pain is sometimes unbearable and I thought it was. All in my head. Glad to know its not
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    • Posted

      Idiopathic is the same as me

      Pain you have to learn to live with. And the random bad bouts with no ryhme or reason

      Gallbladder removal is not a good idea depending upon whether you have gallstones. My gp advised against as it would cause further problems after a surgeon said you have no gallstones during or after your attack I will have to put something down and remove it. My gp went mad after two failed attempts and it came to light that my repeat chest infections are due to enzyme damage to my lung on the bottom left side. After a year of antibiotics I have mild broncreathitis. Always Ask for a second opinion and question there knowledge of the disease.

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  • Posted

    I couldn't have said it any better! After dealing with idiopathic chronic pancreatitis since I was 16 and the horrible knowledge of the disease making it even more difficult. I think the only reason I have done as well as I have is because of friends and family. My best friend, I met in the hospital when I was first hospitalized for the pancreatitis. He was in the hospital after a surgery removing tumors from his back. He helped me through so much pain and we were inseparable from that point on. He was my strength when I had none and to think that someone going through much more than me wanted nothing more than making things easier for me. 2 years ago I lost my best friend and things have never been the same since. I find that I don't talk about it as much since he is not here until I found this website and all of the amazing people i've got to talk to. Thank you from the bottom of my heart.
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    • Posted

      Sorry to hear about your wonderful friend. I am glad that our waffle and experience can help you. Its a dark place sometimes where everyone around you just doesn't understand the pain. And when you tell them it is officially worse than labour they raise an eyebrow and then you wish for a split second they could just experience the pain and see that you can't describe it but we who have the disease can with just a look and smile at each other to say You understand and I am not alone . keep smiling alwayshave time to chat. If my writing is poor sometimes its the tramadol well that's my excuse lol
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  • Posted

    Is anyone still having the extreme fatigue? For the past three months almost four as of Feb 16 I seem to always need a three hour nap in the afternoon and when everI try to do anything physical I get really tired after about two hours like going to the grocery store or even taking a shower exhaust me. If I take a shower I have to rest for 15 minutes after before I can manage to do anything else
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  • Posted

    i agree with all the comments made. ive been living with this irrational disease since july 2012. i never thought or was told its a life long change. ive been trying to regain the three stone in weight i lost. again plenty of clinics/programs/aids/diets if you need to lose weight but virtually nothing when you need to gain it. as for fatigue i have days when getting dressed is an effort.days when i sleep nearly all day. i cant do things i used to and thats frustrating. my son is now my carer who helps me do all kinds of things. my days seem to revolve around taking tablets and trying not to do anything to enhance the pain.

     

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