Over two years of being sick. Need answers.
Posted , 4 users are following.
I'm going to try and make this part short and answer any questions anyone can think of later on. Me and my girlfriend both became severely ill about two years ago. I am 29 years old and she is 28. We both had on and off bouts of issues beforehand but nothing that put us out of work like this did. We have had extreme fatigue, muscle and joint pain, abdominal cramping, and alternating diarrhea and constipation. We ended up both being diagnosed with c.diff after getting colonoscopies. We received various vancomycin and flagyl. Finally we both got FMT with no resolution of symptoms what So ever. My doc gave me creon a few days ago and my cramping subsided today. Can someone shed some light?
0 likes, 8 replies
Shortie79 Ahack90
Posted
Creon is just a supplement that your pancreas already produces. Your pancreas provides digestive enzymes (Creon) and insulin. If the pancreas isn't up to par then it won't produce enough enzymes needed to digest foods. However, there's a fecal test to see if your pancreas is producing the amount of enzymes it's supposed to. If it's not then Creon is used to supplement. I have a family member who was diagnosed with C-Diff and it wiped her out. She was very sick for a long time. Sometimes more antibiotics are needed but you can't take them because your body needs to heal from the last set. If a person gets too much antibiotics that too can make a person very ill. Have they done any scans on your pancreas? If you had pancreas issues you would be in a world of agonizing pain. There's a slew of symptoms that comes with pancreatic issues. However, muscle and joint pain aren't a symptoms (in my experience). I was born with a pancreas condition that caused chronic pancreatitis. After years of nothing working I just had my pancreas removed. It's a huge surgery and I'm still in the hospital trying to recover and I've been here since Oct. 3rd. Just FYI the pancreas is the hardest organ to diagnose, but you're pretty young to have a pancreas issue unless you have a family history, cystic fibrosis, or Pancreas Divisium (born with two ducts like me). Hopefully the Creon continues to help you.
Ahack90 Shortie79
Posted
They considered us very low risk for the c.diff as well but we both ended up with it. We do get extremely sharp pains in that area all they way down to near the belly button. I myself actually went through a series of cardiac tests that all came back good. including MRI with contrast. but during the incident I had a sharp horrible pain on the bottom part of my heart. couldn't even lay on the side for two weeks after.
vedawms Ahack90
Posted
It sounds like you got sick while traveling? I became deathly ill in South America 25 years ago (rotten alpaca), and never really felt right again. Medication didn't touch the diarrhea or weight loss for a year. It finally just stopped...
It's possible your doctor is trying out an "off-label" use for CREON, on the grounds that it's hard to do a lot of damage.
I couldn't really say why it works for you, except that it may be reducing gastric rumbling? Usually protonics (Bentyl) will work in that case, not CREON.
I'm interested in what your doctor has to say about the CREON.
Ahack90 vedawms
Posted
so we tried alot of probiotics in the process, even tried cultivating our own in efforts to introduce larger amounts of probiotics, nothing worked. c.diff tests are negative. Also other medications tried were bentyl and dispiramine. neither worked and side effects from dispirimine were rough. The weird thing is really didn't do any traveling, however I did work around alot of exotic animals. So maybe I didn't have to travel, maybe it came to me. We are getting O&P tests repeated. Also SIBO tests were negative. Whatever it is, it had effected both of us equally with all the same symptoms which also leads to possible communicatable something. We have also been cleared for HIV, hepititis and everything down that route.
vedawms Ahack90
Posted
Hmmm... I worked at a tiger preserve, and nothing infectious jumps to mind, other than toxoplasmosis, which doesn't fit. Chagas (kissing bugs) maybe?
The CDC recommends getting a referral to a state epidemiologist if you can if you think it's exotic. That would be my first step, even though the wait may be long.
In the meantime, you probably know the drill about keeping a food diary. Include meds, beverages, activity, anything different. See if the pattern leads to continued improvement. Also, make sure your current gastroenterologist is not a generalist. See if you can find one steeped in exotic diseases. And try to piece together when you first noticed symptoms.
Did you make friends while you were traveling who were also sick? Perhaps you can ask how they are faring?
On the off chance it's not exotic, you can get your water tested, usually for free.
What about Lyme Disease? If you're in the New England area, it's an epidemic, and almost all symptoms match, as far as I can tell.
I am sorry to say that I feel your agony. I hope you solve this awful mystery.
tammie68224 Ahack90
Posted
Actually that sounds more like Lupus than pancreatic problems. Although Lupus is somewhat linked to pancreatitis because the stress of Lupus can cause Pancreatic problems.
vedawms tammie68224
Posted
But two people at the same time?
Ahack90
Posted
It's the fact both of us that have the same symptoms is the weird thing. I did have one lyme titer done waiting on getting another one as I read they can be pretty inaccurate.