Suspect Chronic Pancreatitis. Need help with my symptoms.

Digestive health
1

Hi everyone. Male/37y/83kg. I need help with my symptoms. I believe I have CP but doctors reluctant to call it. 

Symptoms (Going on for 8 months now):

- Dull pain in upper abdomen right under the right rib (always right rib never left side) sometimes radiates to back like muscle pain. Kinda like a strained or pulled lower back muscle. Sometimes I feel it up on my shoulder like a pin. Very specific area. 

- Pain sometimes feels more like pressure. Specially when I lay down on my stomach. Feels like there is something underneath my right rib area.

- Pain and sensation is the lowest during mornings. Increases right after I eat. Lasts a couple of hours after. This happens regardless of fatty food. And it is not 100% of the time. Maybe 80%?

- No weight loss

- No jundice

- No nausea, no vomiting

- Very litlle loss of appetite but not enough for me to actually make a difference in my eating quantities. 

Test Results

Endoscopy -> All ok. No findings. 

Ultrasound -> No findings. Gall bladder free of stones or sludge. Conduct ok. 

CT Scan (x2) -> Show enlarged head of pancreas (5cm to 6cm) with stripes on pancreatic fat near the head (could be inflamation)

EUS -> Less than 1 Rosemont Criteria. No change in tissue in head or rest of pancreas. No need for biopsy. Endoscopic Doctor specialist in EUS and pancreas says: Not CP. Maybe Chiliaditi Syndrome.

Blood -> Fasting Blood sugar (112) / Cholesterol (277 - LDL 203) / Amylase 63 / Lipase 233

Stool -> Bristol 4 or 5. No floaters. No oily water after. No diarrhoea. 

Treatment so far:

- All sorts of antiobitics. Parasite chasing. IBS control. 

- No alcohol since 8 months ago

- Strict diet (just this past 4 weeks). No fat. No complex carbs. No sugars.

- Exercise 25 min a day. This I do like 4 days a week. Should be more I know. 

Story

I am really stressing out. I know this could be CP. I used to be a heavy social drinker. Quite for a few years. Maybe since I was 16 or 17. I am now 37. The pain first started when I was at my brothers for vacation. We were doing some serious drinking when I felt this pain described above. A week or so after I started seeing Gastro Dr. Stopped drinking. Took a trip with the wife to Playa del Carmen a few weeks after. Decided to lift my ban on alcohol for a few days. Felt worse after day 3 of drinking. Ate normally for a few months. No alcohol. Pain did not get any better or worse. Always there. Started dieting a few weweks ago. Felt better, but pain is still there. Probably placebo effect or just better health from eating better. Decided to have a couple of glasses of wine for anniversary celebration. Felt worse 3 days after. 

People with CP or with experience with CP. What can you tell me from the info above? Am I right to suspect CP? Or am I crazy?

I am still following up with my Dr and probably start seeing an Endocrinologist. Just need some piece of mind (for or against). Its not knowing thats making me desperate.

2

I hesitated to reply because my story followed exactly the same pattern as yours for nearly a year. However, I gave up alcohol right at the beginning and was strict about following a low fat diet. Scan after test after scan and all that ever showed up was an inflamed head of my pancreas. Well, four weeks ago I suddenly developed jaundice and an infection that necessitated a hospital stay and during that time I had an ERCP to fit a stent and guess what? The blockage is a tumour. I suddenly have cancer. Goodness knows what will happen now but I'm going to stay positive.

I'm not trying to scare you but do remain vigilant. Pancreas issues are vague and hard to diagnose and treat. If you see any sign of jaundice, get to hospital immediately. It won't necessarily mean cancer but will need dealing with. Live every day as it comes and try not to honk ahead too much. Try and embrace and enjoy your life the best you can. Sometimes our bodies give us no choice but we can choose how we live.

3

Hi Chepox,

My story is a little different than yours. My symptoms began in July 2016. My stomach started hurting on my left side and raidiated to my upper back, almost as if the pain shooting directly through (if that makes sense). I had blood work done to test for pancreatitis but that came back normal, I then had an ultrasound and an endoscopy which both were normal. Since I have a history of adhesions I thought it could be that, so I asked my doctor for exploratory surgery but because I have a nerve disease I'm too high risk therefore my doctor ordered a CT Enterography which showed atrophy of my pancreas (irreversible degeneration of the pancreas). Since I'm not a doctor I did research and found out that atrophy is normally associated with chronic pancreatitis. I had to tell my primary doctor what I read, since it's not really her expertise but she agreed with me. I also read once your pancreas is damaged enough it stops producing enzymes and your blood work will appear normal. I don't drink (although I used to drink but not an enormous amount just socially) however the specialist said it wouldn't have caused it. I'm only 37 and it's not common for people my age to have atrophy unless you're born with cystic fibrosis (that's what my specialist told me) but I don't have cystic fibrosis. My specialist sent me for more blood, stool and a MRI with and without contrast because she said a CT doesn't really give a great picture of what's going on. I also don't have a gallbladder or an appendix but she said I could have a stone in my bile duct that's causing me the pain after I eat. When this initially started I weighed 154 and now I weigh 115 (I'm only five feet tall) and now my bones are showing. It's a good thing you're not losing weight but if you do then go to your doctor. I think you probably have chronic pancreatitis but it's hard to diagnose with blood. You can have your doctor order a stool test to confirm.

4

Oh man. Really sorry to hear that. I really do hope you can get proper treatment and improve your health. 

Did you ever have an Endoscopic Ultrasound? The reason I ask is because the doctor mentioned cancer as a cause of the enlarged head of the pancreas and suggested an EUS to rule any cancer possibility (they can take a biopsy during en EUS in case they find evidence of suspect tissue). Mine returned with nothing (no biopsy needed) indicating that the enlarged head of the pancreas might be an anatomic anomaly. Of course I dont have a CT scan of before I felt the pain to compare to. 

 

5

I did have an EUS in November but there was no cancer evident then. It only became apparent after the ERCP last week when they took a biopsy. It's like it's popped up from nowhere but that's the nature of the thing. As far as they can see it's not anywhere else. Pinning my hopes on an operation (Whipple) so we'll see. Just bad luck. I plan on fighting this - no way am I dying. Oh no.

6

Well I guess its a good thing you caught right away. Opens up possibilities.

Now I am wondering if you just had bad luck or if its a the course of the illness and its a matter of time before it happens to me too. 

I will be very vigilant of my condition and keep working until I find out if it is really CP or some other condition. 

You keep fighting dude/dudette. Early detection is the key to beating cancer (so I've been told).

7

As a 52 year old female it's very unusual for it to go that way - so random. And not there one minute and there the next and all the time they were looking for it. Well, it's here now so time to try and get rid of the sod. So I wouldn't worry about it for you.

8

You case sounds very similar to mine except that I had 3 criteria on the EUS. My lipase has been elevated for the last 10 years and I have experienced no significant pain. It is possible if you have CP, but it may never develop into a severe stage. 

In my case, I thought my pancreas woould be   destroyed by now. Less than a week ago I had a CT scan because of some minor pain on the upper left side of the abdomen. After ten years I decided to finally find out how deteriorated my pacreas was. The CT scan still showed no abnormalities of the pancreas.

Suggestion: Don't drink or smoke. Excercise and eat healty. If you are lucky, you can be pain free for many years to come. While I have experienced an uptick in pain in recent weeks, it is nothing significant. I don't even need tylenol for it. 

The pacreas remains an elussive organ. Even the top pancreas specialist in the world can't explain its misteries. 

Mild Chronic Pancreatitis (some doctors now suspect), may not developed into a chronic stage. Perhaps I am one of those lucky ones.

Please ping me if you have any questions. 

9

Thank you so much for your answer. I honestly don't feel sick. I feel pain and discomfort but that's about it.

I quit drinking and I have never smoked. I am also eating extra healthy. It is an extreme diet. No fats, sugars, complex carbs. 30 min of cardio a day. The works. This has been going on for a couple of weeks now. Just these past three days I have felt very different. Pain is still there but much reduced. And there are times in the day that I feel 100% normal with no pain or bloat (mostly mornings). I am beginning to feel hopeful every now and then. Your comment definitely helps! I might be a similar case as you.

I have a follow-up study in a couple of weeks where I hope my cholesterol and sugar levels improve. I will keep everyone posted. Just in case this helps someone in the future.

10

There are a few things you can start doing now: you mentioned that you stopped drinking, and that alone is perhaps the best big step you can take. Smoking is just as bad. Diet and exercise are important in that a healthy diet may alleviate the pain and exercise will keep depression and anxiety at bay.

In short, take it from me, 10 years with CP and there were no signs of abnormalities in the CT scan. I currently have some mild pain but I don't know if they can be traced to the pancreas.

I am seeing Dr. Christopher Forsmark, the leading doctor in the world treating Chronic Pancreatitis. He has written that the natural history of Chronic Pancreatitis is not yet understood. The belief that the disease is always progressive is now being debated. In autopsy, they are finding deceased people with Chronic Pancreatitis. These people were never diagnosed or suffered significantly.

The larger point is that CP tends to progress at a remarkable pace in most patients which is terrible. Perhaps you, like I, are the exception. I feel great 10 years into CP. No significant pain, never threw up or had nausea. I have never been hospitalized as a result of pain. For that I am grateful. 

 

If you end up progressing at a fast pace, start having a plan now. Before a diagnosis is established, get a disability insurance policy (income replacement), go see the best doctor with knowledge not only of the pancreas, but someone who understands pancreatitis well, and then and develop a plan to deal with its complications (diabetes and malabsorption of important nutrients) But I don’t think you will get there. If you are going on two years without any significant pain, things do not look bleak for you.

 

It is a tough disease to have, but it can be managed and some of the good things in life can still be enjoyed.

Please stay in touch,

11

Thank you for all your advice. My changes in life style were long overdue. I plan on keeping them for good. 

Still, the question remains If I do have CP or not. GI in charge of the EUS said no, main GI I go to also said no. They both said it COULD (both put a lot of emphasis on COULD) be something called Chiliaditi Syndrome where the colon displaces and moves behind the liver and creates all sorts of problems. 

I could go with that, but I still question why the head of my pancreas is bigger than avg (anatomic anomaly?) or why I felt worse two days after I had some drinks with the wife for my aniversary. 

I am guessing I am reaching a point where it no longer matters if a I have CP or something else. Treatment seems to be the same for all the possibilities left. Better diet, exercise, no drinking or smoking.

To your comment above, I really do hope that I can return to being normal and not thinking about the pain and discomfort 800 times a day. 

Good thing is they have ruled out cancer and a couple of other nasties. And if this is going to kill me, it is going to take quite some time. That should give me enough peace of mind to carry on with a normal life, regardless of the diagnosis. 

Thanks again. And if I find out anything else about my condition I will for sure post it here.