Help me figure this out, I am lost and stumped…

Hi Andy,

Thank you for your reply. I will ask about those tests. Any thoughts about what could be going on? Have you had any of this?

i am not an doctor . there are lot of thing can go bad . even though your elastase test is normal i would suggest to do these test to rule out pancreas issue. mean while go on low fat, easy to digest food diet and no alcohol .give your pancreas a rest to heal.

Hi Shortie!

I can not tell you how much I appreciate your reply. When you are faced with weird symptoms the rest of the world just doesn't quite get it! I am very thankful for this group!

Would an abdominal CT scan tell me anything?

They are doing a colonoscopy tomorrow just to rule out large intestine issues...

I'm surprised they haven't performed a CT yet … the CT was one of the first couple hundred tests they ran on me lol, which revealed atrophy of my pancreas (when researched … atrophy of the pancreas is usually associated with CP). When I told my primary care doctor that's when she sent me back to the GI because it was out of her expertise. The GI had already done a regular endoscopy by then. My primary had said my CT was normal and saw no reason for my abdominal pain, that's when I told her about my research which she looked up and agreed. I went back to my GI and she performed a MRCP (gold standard for noninvasive tests), (an EUS and ERCP can both diagnose pancreas issues but they both can cause a pancreatitis attack after the test). The MRCP is the ONLY test that revealed I was born with two pancreatic ducts that never fused together (normally found during an autopsy). My GI still thought my symptoms were IBS related so I demanded a pancreas specialist. The pancreas specialist confirmed my Pancreas Divisium diagnosis but also diagnosed me with CP and performed 10 ERCPs before removing my pancreas … removal was the last resort. Before removal, I also tried the Celiac plexus nerve block (if you have nerve issues I don't recommend that treatment), stents, duct widening etc., there was a lot of scar tissue that started to cause more problems. It's confusing unless you know me … sorry if I am confusing you. I had a colonoscopy but I was already diagnosed and the only reason they ordered it was because I had black stool (which meant blood), after I had the colonoscopy I was fine, no more black stool. My results were normal and then my pancreas was removed and now I'm dealing with my current issues … bloating, gas, steatorrhea, soft stool, acid reflux, etc. Upping my Creon (digestive enzymes) helped a ton but it was my Endocrinologist that warned me if I didn't take enough Creon, it'll cause abdominal pain (basically gas, from what I feel). If you're not on any digestive enzymes you can buy them online. Another thing to consider, there's other medical conditions that'll mimic pancreas issues. One medical condition is gastroparesis, basically it's slow digestion (I have this condition too) but it's another rare one. Although frustrating, clear tests are a good thing, but I get the NEED for answers. I would recommend getting a CT, MRCP, speak with a Dietitian or Nutritionist to confirm you don't have any food intolerances (they can develop at any age). I would also journal your symptoms, this way you may be able to tell whether it's food related … for example red meat might cause more symptoms especially because red meat is harder to digest, you start journaling your food. The next time you get sick you might be able to say what triggers you (if it is your pancreas, food is a trigger period but your body will tell what foods your pancreas can no longer tolerate). When you journal, you can refer back to it, and trust me when I say, there's been many times in the beginning when I didn't remember if a certain food made me sick, so I started writing down what foods stayed down. Then it got to a point when I would have a good day but didn't remember what I ate (meds side effects, memory loss), I had my journal to refer to for my safe foods. You may not be puking but certain foods may be upsetting your stomach. My specialist had me eating six small meals rather than three big ones … it's easier on the stomach to digest. I had to substitute apple sauce instead of fresh apples, frozen veggies over fresh, stuff like that. Not something I would have thought about but definitely helped me out, once I had the knowledge.

Dear Shortie,

Thank you for that excellent information!

You have been through so much! So many procedures...Your doctors had to be impressed that you went through all of that!

When they did the first CT did they see an issue with your pancreas? Did you do the abdominal CT with contrast or did you do the CT Enterography?

What were you original symptoms that let you know you had a problem in the first place?

What other conditions mimic pancreas problems? That may help me zero in on other tests to run...

THANK YOU for all of your help!!!!

I have a lot of medical issues and I barely just turned 40 but it all makes me stronger. Back in 2014 I had surgery which left me pretty much bed ridden. My primary doctor added a new pain medication for my CRPS (nerve disease that attacks the limbs, contracts the muscles and pretty much paralyzes you until the nerves decide to do whatever they want). Anyway, I started vomiting from the medication and didn't stop after I stopped the medication. Shortly thereafter, I noticed pain after I ate then my stomach would have gut wrenching debilitating pain which would radiate to my back. I don't have my gallbladder, appendix, uterus, and I knew something was wrong. I have, had at least one surgery if not up to five surgeries some years from 2002-2016, therefore I paid close attention to my body (plus my stomach had adhesions in my prior surgery and my symptoms weren't this bad). I had loss 50 pounds in a matter of months (before I couldn't lose weight going to the gym 3-5 times a week, eating clean and working three jobs, then being bedridden I suddenly lose weight?, that's never a good sign), my hair was falling out and/or stopped growing, migraines, nausea 24/7, feeling of fullness only after a couple bites, acid reflux, waking up vomiting undigested food in the middle of the night and itching (bile was backed up in my ducts), constipation and/or clay colored stool. Everyone is different and will experience symptoms differently. The gallbladder and stomach can both mimic pancreas issues but I'm not a doctor, and I feel those are questions for a GI specialist.

Dear Shortie,

You are strong! That is an incredibly tough journey!!!

When you say clay colored stool, I see that mentioned a lot on medical websites.

Does that mean light brown like a tan or khaki color? Or is it different?

Thank you,

David

It can depend on what you eat but it's not the usual crap brown color family. It is more of a gray/beige/taupe color (they say clay color because it literally looks like clay) but it usually only happens when you get an attack or your bile ducts are clogged. I currently have light yellow/brown stool which looks nothing like what I dealt with when I had a pancreas. However, I am dealing with EPI now and I wasn't dealing with that when I had a pancreas.

Hello David,

I hope you're feeling better at this point and I'm glad that your colonoscopy procedure went smoothly! I've been following your post since last week and it caught my attention because I've had similar symptoms since March of 2019, so almost a year now. I'm a 39 year-old female and have been in good health until this point. Sudden change in bowel habits, which at first started with me needing to go to the bathroom almost constantly, pressure, so much gas and rumbling intestines. It felt like there was a constant pressure against my rectum, and only a little bit of stool would come out leaving me with a feeling that I still had to go. Stool was not a diarrhea but rather loose or a mix of constipated at loose at the same time, also undigested pieces. I saw a primary care who did not want to hear anything and just suggested it sounded like an IBS and said to stay clear of dairy, grain and take probiotics, and pushed me off to go see a gastroenterology specialist. I was very worried because my family (maternal line) had notoriously bad stomachs, my grandmother had gastritis, constipation and horrible digestion, and I lost my own mother to colon cancer at the age of 56, so I went to an urgent care to get it checked out. The doctor looked at me like I was crazy and said that I should go see a gastro and they could not diagnose me there. I literally had to yell and insist on CBC(complete blood count) test and an abdominal X-Ray (which I figured would at least reveal if something terrible was going on). The blood work was fine and the X-ray did not reveal anything other than the fact that I was backed-up. I finally got to the gasto in September, he did pretty much the same blood tests that you mentioned in your post, stool tests and Celiac and IBD panel. He did not think I needed a colonoscopy or endoscopy-which I would not be able to tolerate in any case. He said that I could do a CT scan if I wanted to but I declined at the time because a CT scan involves a lot of radiation and I did not want to put myself through that unnecessarily. So it was just left at that, the doctor said that my symptoms appeared to be very non-specific and no diagnosis. He did not seem to worry that anything serious was going on. Meanwhile the issues continue, some days are better an some not so great. I manage it by taking natural supplements such as slippery elm (which does wonders for my stomach) and peppermint oil caps as well as tumeric. However, my stool never stabilized and is still malformed-going between loose and constipated and I still have false urges and pressure. I don't have any weight loss or red flags like blood in the stool and things are not getting worst by any means, by I'm still worried. I've now made an appointment to see the gasto again in March and this time will tell him that I want a CAT scan-which is the only other option that would reveal anything out of the ordinary without having to get a colonoscopy. I've been going out of my mind researching for almost a year now and my symptoms are consistent with IBS but I know there could be many other issues but the fact that he did the IBD panel and celiac, and crohns at least tells me that it's not that. Did you ever hear back from your doctor regarding your colonoscopy findings? I know that everybody's different but I'm curious to hear if your doctor was able to diagnose your issue. Thank you very much for reading and I hope that you feel better soon and wish you a speedy recovery!

Did they perform an EPI test? It's a fecal test to see if you can digest/absorb fats. It's actually a condition too. Normally they test the fecal for bacteria only, I would inquire. Those who don't know anything about the pancreas have no idea of what affects it has on digestion and bowel habits. My own GI thought my symptoms were IBS related (I only had constipation) and I had two pancreatic ducts that caused chronic pancreatitis. I was only 37 at the time and in my case I had my pancreas removed but I deal with weird bowels now. I have the urge but can't go or need to run like crazy. It's lose but because I don't have a pancreas I have to depend on digestive enzymes (the pancreas usually produces these) in order to absorb what I eat. If my dose isn't high enough then it causes havoc in my stomach. If there's a block in any duct it can cause EPI.

Hi Shortie,

Thank you so much for your reply. They tested for EPI by doing fecal elastase -I actually insisted on it because I did a research and knew that EPI can present symptoms similar to IBS. When they did all my blood tests everything came back normal but there was a slight mal-absorption of fats. That's when I insisted on fecal elastase and it came back completely normal. So the previous fecal fat test was a false positive. I also know that SIBO can cause similar symptoms and I suspect that I might have it because before my digestive symptoms started, I had bacterial infections in the female area and repeated UTIs(pointing to bacterial dis-balance) but doctors don't want to hear it-to them it's a "mysterious illness". I will be going to an alternative, naturapathic doctor to sort this out in the near future because they dig deeper and do better testing, especially when it comes to gut bacteria/overgrowth.

Thank you again for writing an I wish you good health and all the best!

Makes sense. Even when I had my pancreas my EPI test was normal, I'm suffering now but they removed 5-10% of my intestines. I would try getting Creon online, take it with food (you might just not be able to absorb everything at a proper rate). They can also test for gastroparesis (slow digestion), it gives similar symptoms. We know our bodies and know when something is wrong, you'll figure it out but I suggest a female doctor, they listen more.