Pain so bad today broke down sobing.......

TY Brett,

​You are so kind. how are you doing? I hope you are feeling better.

Thanks Manda!  Symptoms still similar each day.  I do find it a struggle to be in fairly constant pain.  But I really need to learn to just get better at managing it the best way I can and just live with it now and make the most of everything.  I do find it very frustrating though.

I am sorry Brett,

I understand your frustration. I am thinking of going to ER Sunday pain so Bad my 11 year old was comforting me. That's not right I should be reassuring him. At times I am angry at this pain and disease. My only hope is 6 Hours away. And being in a car is excruciatingly painfum for me. Traveled to Florida in January took 5 days to get there because I kept having to rest..... Sorry my mood is down. Its been so hard lately..

Best of luck and hugs,

Manda

I am truly sorry Brett,

I wish you all the good things in life. It is hard not to get frustrated.....

Thanks Manda,

Going out with friends today so hopefully that will get my mind off things for a little while. I'm also incredibly frustrated as I am in this situation because I didn't seek out medical attention when I overdosed on the alcohol otherwise I may have been fine.

I am really sorry to hear about your situation. But hopefully you will get some relief from your pain soon. It's hard going through these more painful days. Wishing you feel a bit better soon!

Take care,

Brett

Hi Brett,

I hope you had a good time with your friends. My sons Birthday was today. I made it through the party only to throw up violently afterwards. So glad the company had left. I hate people seeing me in so much pain I throw up. Feel like I am on a down ward spiral. My Dr. Specialist 6 hours away told me to day I can not have surgery because I have problems with the Creon. Ended up crying in the tub. She told me narcotics are my only hope.... I had to tame two hot baths 30 mins. Apart the pain was so bad

That my thoughts turned dark for a moment. I get down sometimes and want to give up. My son is such a gift he doesn't realize how he keeps me going and smiling even through tears. Hope you are feeling well. I am sorry you hurt. I wish I could just take everyone s pain away. Thinking of you and hoping you had a great day! Hugs to you!

Manda

Hi Manda,

Yes it was really nice to get out with my friends for the day.  Really enjoyed myself and a good distraction from the pain.

Happy Birthday to your son!  Hope you and him really enjoyed the party even though it's such a struggle with the pain and feeling sick.  And it's really nice that your son keeps you going through these tough times.

And very sorry to hear that surgery is not an option to improve your pain.

Yes it was be nice if we could take everyone's pain away!

Best Wishes,

Brett 

Brett,

​I am so glad to hear you had a good time. it is so important for us to feel like we have some kind of "normal" life! Yes I had a very nice time my little boy is such a gift he had a great time. I told him I was sorry I was sick on his B-day. He said, "mommy it is not your fault". then he hugged me I am so blessed to have such a kind and caring son! It's okay about the sugery I am hoping to go to Nebraska next month too see how they can help me. It is a 6 hour trip one way so not looking forward to the long ride. But keeping a smile and positive out look on things. I wish you the very best! I hope you find help soon!

Hugs,

Manda

Your post about your son's birthday party brought tears to my eyes Manda.

Congratulations on getting through it and giving him a great day, you deserve a medal.

I never dreamt that the pancreas could cause such awful pain and symptoms until a year ago. It makes it worse that most people don't understand this kind of pain at all and how ill it can make you feel. Also most people have never heard of pancreatitis.

I feel so lost without a diagnosis. The pain is daily and I cannot be on my feet for much more than half an hour now before I'm in agony - the cramping under the ribs and through to back are so intense, I say to my husband it's like trying to walk about with labour pains. It scares me and I wake up in the mornings full of dread.

Your dark feelings are a normal reaction to an incredibly hard situation Manda. Don't feel bad for having them, but try to hold on to the fact that you can have better days and it won't always feel quite as bleak.

You are giving your son an amazing gift, just by staying alive every day and enduring this pain. When I feel overwhelmed by the pain and fears for the future that's what I try to tell myself. If the only thing you can do is bear this pain and live another day then you have achieved a huge amount. I know it's not easy and you have suffered longer than I have with all this so who am I to give advice?! I'm just wanting to encourage you in any wat possible. When every day feels like Everest we need all the encouragement we can get.

Really hope you can get some relief soon, love and hugs x

Oh.... Ruthie,

I was wear you are for years no diagnose. It made me feel crazy. Keep getting checked it is so hard to diagnose CP. You are so right if I walk or stand to long. I am in so much pain I can hardly move. Right now I am on a jello and yogurt diet. Can't keep anything else down. Everything I eat causes me pain. I am so sorry you have to go through this. Its frustrating seeing people going undiagnosed when the symptoms are right in front of the Dr.s You are amazing keep fighting you are a kind soul who deserves happiness. This disease is not only hard on us but our loved ones I so wish I could take their pain away. I think.seeing them worry so much about me is the worst pain of all... I wish with a I am you happiness and answers!

💗and hugs,

Manda

Thank you nettie,

I sure try to some days are harder than others. Thank you for your kind words. I hope you are doing well yourself!

Thank you Gem,I am trying so hard to stay positive. My sons birthday is Friday and I am trying so hard to get everything ready. This pain is so unbearable...... Hot knife through my side and into my back pain has been constant for 24 hours. I amways have pain but not like this.... I can't seek help till after the holidays I don't want to ruin my families holidays... TY for your kind words. How are you I hope you are doing well!! Hugs,

Manda

 

I hope your son enjoys his birthday

My pains have hit another level this week. So pain in my front going thru to my side and back. It is very much like a hot knife it's pretty much constant and I'm not getting much relief from it

But still, there's nothing wrong with me! lol!

I really hope you enjoy tomorrow as well! Xx

TY Gem,

Your pain sounds exactly like mine. I have had CP a long time. Don't give up and keep searching for answers. I am still hurting bad today. Just trying to make it till November. I was gonna wait till January but I am so miserable I don't see how..... I hope you find out something soon sorry you are hurting!

xx Manda

Hi Gem, how are things going with you now?

My pain has got worse, it's been like a knife through me the last few days. But also I feel so ill all over - terrible daily headaches, nausea, burning in stomach and still getting loose, yellow stools. This has all got worse in the last month. I'm thinking allsorts and my anxiety is out of control.

Trying to take it one day at a time. If only I could get my mind off it for five minutes but it's hard when you feel so rough and have no answers. I'm finally due to see the pancreas specialist on Wed but don't know if she will have seen my previous CT, MRPC, and EUS scans I had done with my gastro doc. I don't want to have to start all over again with the scans.

Have you had any news on your gallbladder appointment yet?

Hi Ruthie,

Sorry you're still struggling and in pain.

I'm the same as you, pain has gotten a Lot worse the past week and has changed to being almost constant and like a hot knife through me

Good luck at your appointment. I hope they are able to try and sort you out. They shouldn't need to re-scan you as long as the scans are recent. Well you would hope they wouldn't! Lol!

I see the surgeon on 1st December. I was hoping he would be a pancreatic specialist but he isn't. He's just a basic surgeon I don't know whether to ring up to see if I can see another surgeon or just see him anyway coz I don't wanna have to wait any longer than I have too

What are you taking at the moment tablet wise?

Gem xx

Hi Gem, sorry you are having a bad time again. Do you feel nauseous and ill with the pain too? I'm losing more weight as eating makes the pain worse.

I've emailed the gastro secretary to see if all my scan results can be made available to the pancreas doc - I would feel better if I knew they were being reviewed by a fresh pair of eyes.

Maybe you should stick with the Dec 1st appointment but still push with your GP or gastro doc for a pancreas specialist referral too?

I am taking Buscopan and paracetamol or co-codamol but to be honest by the end of the day when the pain is bad none of the meds touch it. I am just lying down every half an hour. We've just had a week in Spain, I nearly didn't go, but spent the whole time near a sofa or sunbed as I just can't be on my feet or sat in a car for long. The drive to airport and flight were a real challenge. My daughter and husband enjoyed it though and that made me happy.

I've been wondering if your hormones are playing a part Gem, post pregnancy. I've read oestrogens can impact the gall bladder and pancreas and many women have gall bladder issues during pregnancy because of this (I did years ago). I've read oestrogens can also make the Sphincter of Oddi contract. This can be an issue for women in pregnancy, taking the pill or HRT, or with oestrogen dominance or hormone fluctuations. I am in perimenopause and this problem started the same time my hormones went haywire. I don't know if it's caused it or just revealed it or if it's unrelated. Unfortunately the research on the impact of female hormones on the biliary system just doesn't seem to be there but there is a known link. Just wondered if you noticed a pattern at all with your hormones?