Pancreatic insufficiency that’s not responding to treatment?
May 30, 2021 8:19 AM Subscribe
My partner is having pancreatic insufficiency after gallbladder surgery. He is not responding to treatment and the symptoms are ruining his quality of life. What are our next steps?
My partner has had digestive troubles his whole life. Giving up gluten 10 years ago did a lot to ameliorate that. Two or three years ago he began having stabbing abdominal pain, and last summer he had an emergency gallbladder removal. Then he became one of the few who can’t seem to digest fat after gallbladder surgery, and the last year has been a misery of digestive troubles that have kept him, at times, in the bathroom 24 hours a day.
The gastroenterologist has diagnosed him with pancreatic insufficiency and referred us to a pancreatic specialist. She has prescribed something with a name like cholesterine (the gritty, sludgy thing you drink) which he wasn’t able to get down without nausea. And then we tried creon, which didn’t help, although maybe he didn’t take enough of it. All through this he has stuck pretty close to a vegan and gf diet, as animal fat triggers the worst attacks (but even on the vegan diet he still has random attacks with no rhyme or reason, as a food diary shows.) He’s had all the imaging and an endoscopy. He’s due for a regular colonoscopy soon. His elastase numbers go up and down but are way too low overall.
Spirits are low here. Have you had this experience and found a solution?
My partner has had digestive troubles his whole life. Giving up gluten 10 years ago did a lot to ameliorate that. Two or three years ago he began having stabbing abdominal pain, and last summer he had an emergency gallbladder removal. Then he became one of the few who can’t seem to digest fat after gallbladder surgery, and the last year has been a misery of digestive troubles that have kept him, at times, in the bathroom 24 hours a day.
The gastroenterologist has diagnosed him with pancreatic insufficiency and referred us to a pancreatic specialist. She has prescribed something with a name like cholesterine (the gritty, sludgy thing you drink) which he wasn’t able to get down without nausea. And then we tried creon, which didn’t help, although maybe he didn’t take enough of it. All through this he has stuck pretty close to a vegan and gf diet, as animal fat triggers the worst attacks (but even on the vegan diet he still has random attacks with no rhyme or reason, as a food diary shows.) He’s had all the imaging and an endoscopy. He’s due for a regular colonoscopy soon. His elastase numbers go up and down but are way too low overall.
Spirits are low here. Have you had this experience and found a solution?
Colestipol (brand name Colestid) is another bile acid sequestrant that comes in pill form.
posted by yarntheory at 8:58 AM on May 30, 2021
posted by yarntheory at 8:58 AM on May 30, 2021
The pancreatic replacement enzyme pills can require a lot of trial and error to get the right dosage. It sounds like you may have given up on them too early. I believe you can also take proton pump inhibitors to improve their uptake. This sounds miserable; good luck.
posted by praemunire at 10:18 AM on May 30, 2021
posted by praemunire at 10:18 AM on May 30, 2021
I'm an emergency physician/medical toxicologist.
1) Your partner is in excellent hands. Though neurosurgeons might beg to differ, pancreatic specialists (formal name: hepato-biliary specialists) are almost always the smartest person in the room--and that includes rooms full of doctors. Here's why:
The hepato-biliary system (liver, pancreas, gallbladder) functions as center or hub, so to speak, of every metabolic and homeostatic process in the body. It is dizzingly complex, even when something isn't wrong with it, and you have to know your shit cold, back and forth, to qualify as a specialist in treating it.
Also, exocrine pancreatic insufficiency is quite common, and gallbladder surgery is the most common operation performed in the United States.
upshot: this guy will know what to do
If that doesn't make you feel better...
2) One of the hepato-biliary surgeons at my old hospital was an Estonian guy named Bent Koch, invariably pronounced "cock" over the PA
posted by BadgerDoctor at 10:30 AM on May 30, 2021 [11 favorites]
1) Your partner is in excellent hands. Though neurosurgeons might beg to differ, pancreatic specialists (formal name: hepato-biliary specialists) are almost always the smartest person in the room--and that includes rooms full of doctors. Here's why:
The hepato-biliary system (liver, pancreas, gallbladder) functions as center or hub, so to speak, of every metabolic and homeostatic process in the body. It is dizzingly complex, even when something isn't wrong with it, and you have to know your shit cold, back and forth, to qualify as a specialist in treating it.
Also, exocrine pancreatic insufficiency is quite common, and gallbladder surgery is the most common operation performed in the United States.
upshot: this guy will know what to do
If that doesn't make you feel better...
2) One of the hepato-biliary surgeons at my old hospital was an Estonian guy named Bent Koch, invariably pronounced "cock" over the PA
posted by BadgerDoctor at 10:30 AM on May 30, 2021 [11 favorites]
The thing that made cholestyramine work OK for me was making sure I took it with abundant amounts of water and carried on sipping water throughout the day. Fluids are so important for carrying things through your gut, and sadly neglected.
posted by ambrosen at 10:31 AM on May 30, 2021
posted by ambrosen at 10:31 AM on May 30, 2021
My son was diagnosed with exocrine pancreatic insufficiency via fecal elastase, but then undiagnosed after a pancreatic MRI and direct pancreatic stim test showed no EPI. His elastase is still extremely low but the three enzymes tested in the stim test were normal. Can you ask your pancreatologist if those tests are worth doing for your husband, ideally while he’s already out for the colonoscopy? My understanding is that there are specific things you can do if some enzymes are low but others are normal. (Also, my son did not have gall bladder issues with this so I’m not sure if this is relevant.)
And yes, agree that Creon took a LOT of trial and error to figure out how to dose.
There’s also a pretty active EPI Facebook group that may have ideas called Living with Exocrine Pancreatic Insufficiency (EPI) Support Group - worth checking out. Best of luck to you guys.
posted by bananacabana at 11:08 AM on May 30, 2021 [1 favorite]
And yes, agree that Creon took a LOT of trial and error to figure out how to dose.
There’s also a pretty active EPI Facebook group that may have ideas called Living with Exocrine Pancreatic Insufficiency (EPI) Support Group - worth checking out. Best of luck to you guys.
posted by bananacabana at 11:08 AM on May 30, 2021 [1 favorite]
IAARN, IANYRN,TINMA
After having a gangrenous gallbladder removed emergently, I ended up in the same situation as your partner, still sick, doing tests including upper and lower GI studies. I finally told my GI that I wasn't swallowing any more liquid nastiness including medications when he suggested cholestyramine. We agreed on the pill version of colesevelam (Welcol). When I asked why he just didn't do that in the first place, he said it's because you need to swallow 6-8 of them per dose. I tried that and ended up constipated for about a week. I was able to cut it down to two tablets every other day. That was me being me - your partner should probably get his GI's OK to play with the dosage before he does it on his own.
I will warn you that they are about 3/4" horse pills, but they *are* swallowable. I now only take two of them when my stomach is really acting up (I'm about 12yrs out from the surgery but I do have IBS). At this point, I'm able to tell based on how I've been feeling whether or not I'm going to need them and kind of head things off at the pass.
Ask for the pill version, but know that your partner will have to play around with the dosage to find what works for his body. While he's at it, your partner can also ask his GI about instantly dissolving tablets for nausea (ondansetron). Even if he gives him just a couple weeks' worth till the other meds kick in, it will help. They work pretty quickly and make a huge difference. I remember all of this vividly and it's a pretty crummy situation. It will get better, just hang in there.
posted by dancinglamb at 12:28 PM on May 30, 2021 [1 favorite]
After having a gangrenous gallbladder removed emergently, I ended up in the same situation as your partner, still sick, doing tests including upper and lower GI studies. I finally told my GI that I wasn't swallowing any more liquid nastiness including medications when he suggested cholestyramine. We agreed on the pill version of colesevelam (Welcol). When I asked why he just didn't do that in the first place, he said it's because you need to swallow 6-8 of them per dose. I tried that and ended up constipated for about a week. I was able to cut it down to two tablets every other day. That was me being me - your partner should probably get his GI's OK to play with the dosage before he does it on his own.
I will warn you that they are about 3/4" horse pills, but they *are* swallowable. I now only take two of them when my stomach is really acting up (I'm about 12yrs out from the surgery but I do have IBS). At this point, I'm able to tell based on how I've been feeling whether or not I'm going to need them and kind of head things off at the pass.
Ask for the pill version, but know that your partner will have to play around with the dosage to find what works for his body. While he's at it, your partner can also ask his GI about instantly dissolving tablets for nausea (ondansetron). Even if he gives him just a couple weeks' worth till the other meds kick in, it will help. They work pretty quickly and make a huge difference. I remember all of this vividly and it's a pretty crummy situation. It will get better, just hang in there.
posted by dancinglamb at 12:28 PM on May 30, 2021 [1 favorite]
I’m not a doctor, but my job involves reading a lot of charts for GI patients, many of whom have PEI. Creon seems to be the enzyme most often prescribed by the panc specialists in my neck of the woods. As others have said, it takes a lot of trial and error to dial in the dosage. This page has a good overview, and towards the bottom includes tips on taking enzymes to ensure maximum efficiency. From what I understand it’s a long road, but once the optimal dose is found the enzymes make a big difference in quality of life.
posted by bluloo at 2:43 PM on May 30, 2021
posted by bluloo at 2:43 PM on May 30, 2021
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posted by FencingGal at 8:51 AM on May 30, 2021 [2 favorites]