Hi all, this is my first post, I’ve never been a part of an online support and I’m so glad this is here. I was diagnosed with CP at the first of December 2023. It did not present as pain in my abdomen but in pain in my left side. I thought for a few months prior to it getting painful enough to go to my GP that it was trapped gas. The GP suspected a possible kidney stone and sent me for a cat scan which showed the pancreatitis along with pseudo cysts. He said to drink more than eat and gave me some pain medicine and did some more blood test. I won’t go in to the whole drawn out story but I ended up in the ER at the insistence of my family who were worried about how sick I was. I was admitted by the consulting GI and another ct scan, MRI, and no food or water for 24 hours. The result was CP with multiple pseudo cysts and the vein to my spleen having been obstructed and the pancreas had created another path to the spleen. I have never had acute pancreatitis and was shocked I was in this shape. I was questioned by every doctor about my drinking which I told them I was a social drinker and never to excess. I was given looks of disbelief and it was a weird feeling. Out of ignorance I asked the attending GI t be my GI for follow up- it’s been frustrating and more frustrating to try and get the right help. I’ve continued to have pain in my side and back on the left side and cannot put pressure there so I can’t lay on my left side and it is painful to sit leaned back or for my waist band on pants to apply pressure.. I’ve had another MRI and one pseudo cyst is 7 cm which I found shocking but was blown off by this GI. He had referred me to another GI for a consultation on getting an endoscopy but they never called me. I’ve called them several times at first because the GI had first not sent the referral and now it’s been several months and this GI just blows it off. He looks at me like I’m drug seeking when I tell him about the pain and this last visit he said that on my left side isn’t even where my pancreas is and it must be caused by something else 😳 oh I forgot to mention all of the inflammation and pseudo cysts aare on the tail of the pancreas. I go to my GP on Tuesday. I’m going to ask him to refer me to someone. I don’t know. It’s been 6 months now, I’ve lost 40 pounds. I do have Creon and that has helped. I seem to be maintaining the weight. There’s so much more I could say but I know this is already a long post. I don’t even know what kind of support I need or what questions to ask. Basically, I don’t trust this GI to be giving me the best help and I’ve had to advocate for myself so much that I’m frustrated to have to continue with no real plan. Okay lol done.
Thanks for reading : Hi all, this is my... - Chronic Pancreati...
Thanks for reading
Insist on having the cysts removed & an endoscopy. Don't drink alcohol at all now. Also ask to see an enterologist who can help you with drinks to help you put on weight. Good luck, keep us posted
Thank you for replying! I see my GP tomorrow. I will talk with him about it.
Please let us know
I saw my GP on Tuesday. He was very. O ends about the MRI results and is referring me for an endoscopy and biopsy to see what is going on. I was very grateful that he is more on top of it than the GI I was seeing. He had choice words about this GI as well and validated my concerns. He said he put on the referral request to be scheduled ASAP and urgent which he said would mean they should call me to schedule in the next 24-48 hours. Well the 48 hour mark was yesterday and no call. I’m so frustrated with the healthcare in the town I’m in inTN. I will call the office of the referral today before contacting my GP for more assistance. My weight he said is okay but I cannot lose any more. He wants me to drink two protein shakes a day in addition to my meals to try and maintain weight. So… more will be revealed… I have grown to trust my GP and I do believe he will help me all he can.
Hope you have a great weekend! 
The protein shakes are brilliant. So glad you have a good GP. Endoscopy & biopsy is what I had as well as MRI & CT scan. I am in Lanzarote, Canary Islands. Hope your weekend is good also
Wow! I’m so glad we have this forum to connect with people in other parts of the world! How long have you had CP?
I have had it for 3 years but it was only when I spent 2 weeks in hospital 2 years ago despite 2 visits to the E.R. the previous year when they said they could not find anything wrong with me despite my abdomen being so swollen I looked 9 months pregnant, not a good look for a 65 year old ha ha. Yes, great that people from all over the world can share experiences & offer support
My doctor initially treated my side pain for a uti with antibiotics and checked me for shingles! When I showed him where the pain was he said “ your kidney isn’t there!” I said okay, so what is and he said on your left side is your kidney, spleen or colon. That’s when I thought it must be my colon! When I was back in his office in two weeks with the pain again, he ordered the cat scan that ended up showing pancreatitis.
So you never had acute pancreatitis? I have never had it and it is disturbing to me to be in the shape I’m in and no forewarning. I too had a very swollen belly and looked pregnant! The weight gain seemed to progress quickly to me and I went and bought extra large everything! I thought it was because I had just gone through menopause! Now I’m having to buy new clothes again…
I don’t know about the protein shakes! I guess I’ll have to experiment to see what I can tolerate. The ones I bought were delicious but made me nauseous and bloated. I’ve never been able to tolerate dairy but I thought I’d give it a try.
Do you still experience pain?
No, I didn't have acute pancreatitis, like you it just happened. I can tolerate dairy but found some of the shakes made me nauseous, even the smell but found the one called Vital Peptido suited me fine. I hope you find one that helps. Yes, I am in pain nearly all the time, except when I am asleep. Take care
Hi there. Please make sure you keep on your doctors about tests. In March of this year I had severe acute pancreatitis that sent me to the ER. I'd had symptoms of chronic pancreatitis (but on my right side under ribs) for a couple years before that but didn't know what they were. I do not drink but my diet and exercise level left something to be desired.
An ultrasound showed fluid around my pancreas and a distended gallbladder. That led to a CT with contrast, which showed a 9cm "pseudocyst". That led to a endoscopic ultrasound with a fine needle aspiration to drain the cyst/test fluid for CEA levels. The draining failed and they scheduled me for a cystogastrostomy, to attach my cyst to my stomach with a stent so it would drain.
The fluid came back negative for malignancy, but the CEA number (48) came back in a 'grey area', which led them to question whether it was really a pseudocyst. They cancelled the cystogastrostomy and convened a multidisciplinary conference so they could get many heads together to decide what to do with me. If it was not a pseudocyst and they drained it into my stomach, it could flood my digestive tract with bad cells.
They held the conference a few days later, and decided that it was not a pseudocyst. My surgeon sent me home to get stronger and rest my pancreas for 6 weeks, then I underwent a distal pancreatectomy (removing the entire cyst with it) with splenectomy, and a cholecystectomy.
They sent my organs out to pathology- they were right, it was not a pseudocyst, it was a Mucinous Cystic Neoplasm, which had the potential to turn into cancer later on. They got it all out before that could happen.
All of this happened in less than two months. I went to the ER on March 4th and had surgery April 23rd. A month later, I am still recovering but grateful my surgeon was confident and well informed.
Try to find a specialist that deals specifically in pancreatic cysts and cancer. It's worth it. I lucked out in that the ER and Hospital I chose are the home base for just such a specialist in our area. It sounded like people came from all over NC and beyond to see him, because when we said we lived ten minutes away the nurses said we were lucky to be so close, and some people have an hours long journey home.
I'm the meantime, lots of water and a very low fat/low cholesterol diet helped me while I waited for surgery. Avoid saturated fats and trans fats as much as possible too. For protein shakes, Premier Protein ready to drink shakes worked well. The Cafe Latte and Strawberries and Cream are my favorite.
Best of luck with your journey! ❤️
Wow! Thanks for sharing your experience with me! I’m impressed with the car you received! I don’t have much faith in the referral I received to get the endoscopy because although my GP put it was urgent and said I would hear from the in 24-48 hours, there were crickets. This being a holiday weekend I’ll have to wait until Tuesday to call myself. My pain is also under my rib on the left side! The GI doctor I had been seeing said to me that that pain wouldn’t be due to the pancreas! 😳 Needless to say I’m not going back to that doctor.
It sounds like you’re in the US? If your are, would you share with me the area of the specialist you saw just in case?
I will try the Premier shakes as well. The one I’ve bought, I’m getting a little more use to but it is more expensive and I don’t know how sustainable that will be for me!
Thank you again! I’m interested in whatever parts of your journey with this that you want to share!
This is the level of care you deserve to receive too!
I'm from North Carolina, I went to Duke Raleigh (DRAH), and am under the care of Dr. Herbert.
Also, you said your cyst is 7cm? Not a doctor, but I believe the threshold for actively treating pseudocysts/other pancreatic cysts is >5cm. From what I understand, anything under that is a 'wait and monitor' approach (but I'm not an expert, obviously).
Thank you! Yes, I actually have ‘multiple’ pseudocysts and the largest is 7 cm the next largest is 3.4 cm. When I had the MRI in December the largest was 2.5 cm. This awful GI I was seeing blew me off when I was shocked at how big it was. My lipase was at a486 in March which is higher than in December when I got the diagnosis. I was unable to get Creon then because my insurance said I’d not met my deductible yet so it would cost me $1400! Fortunately I got turned on to their website and signed up for assistance so I get it now for $5! I cried! Lol anyway the last bloodwork showed it had decreased to 256. My hope is it continues to drop. I eat low low fat, fruit, vegetables and baked chicken most of the time. I’ve added some cheese here and there and sourdough bread as well. When I was hospitalized overnight in December I was not given any food or water for 24 hours and the last blood test results had shown my lipase had gone down to 156 so I guess is started thinking that if I didn’t eat much that it would continue to drop. I realize and have read that starvation isn’t good for the pancreas either! Having to guess what is right is both exhausting and discouraging at times. It’s been 6 months now… I have high hopes for the endoscopy to get an idea of what’s going on!
Hi Redroad,
Has your GP has been able to help you with a GI referral? Whichever doctor that listens to you, is the doctor to ask for referrals and help. Your GP seems to know what to do.
Mission: Cure has a webinar about Creon that has been helpful for me:
mission-cure.org/managing-p...
Anne
Thank you! My GP has made this latest referral and this GI seems to have a good rating, it’s the scheduling that seems to be lacking. There again, although I’m in a city, it’s more like a small big town!
The webinar by mission cure on Creon is how I learned to take the medication because it was never explained to me and I was taking it 30 minutes before a meal! It was from that webinar too that I found this support group!
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