Skip to main content

Can Creon, a pancreatic enzyme, caused damage to internal tissue if it gets into a enterocutaneous fistula?

 WARNING, this post contains Medical Graphic Pictures below.

 I can’t help wondering if Creon, a pancreatic enzyme, caused extra damage to internal tissue when it got into a gastrojejunostomy (GJ) stomach leak, then a enterocutaneous fistula? I had the Whipple Surgery in Nov 2023, then a few days post surgery developed a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) leak, gastrojejunostomy (GJ), and a stubborn fistula. The gastrojejunostomy (GJ), the new connection between the stomach, and small bowel, didn’t show up on any CT scans, and wasn’t truly discovered till Mar 2024. 

Do pancreatic enzyme need a stronger warning about the damage they can do to tissue? 

The reason I ask the above question is: I was discharged from the hospital in early Jan 2024, I still had fluid/ paste leaking out the fistula located in the middle of my incision. When I was discharged it seemed that the leak, and fistula were healing. Jan 6, 2024, Home Care Nurse noted: “ There are 2 small opening in the incision”. On Jan 18, 2024 I saw the medical team, they prescribed Creon to help with digestion issues I was starting to have. I started taking the Creon that night, 1 pill Jan 18, 2 pills Jan 19, 1 pill Jan 20, but did not feel well, so had to stop.  I didn’t take any Creon Jan 21st, 22nd, or 23rd. I emailed the medical team on Jan 20, 2024, explaining I was now having a strange feeling after taking Creon, like there was something in my stomach, or touching it. They asked me to try the Creon again, so on Jan 24, 2024 I started taking Creon again, 4 pills Jan 24, 3 pills Jan 25, 4 pills Jan 26, 3 pills Jan 27. On the morning of Jan 24, 2024 there was only one small opening( fistula) the Home Care Nurse could pack, the other had closed up. I was feeling very hopeful the leak, and fistula were healing. Jan 26, 2024, 3rd day taking Creon I started noticing strange material inside the wound manager bag covering the fistula, and stringy material hanging out of fistula. Jan 27, 2024, 11 pm I woke up, the wound manager was beginning to be leaking around the top edge, when I checked it, it fell off me. There was a new opening (now 2 larger openings) with a lot very strange fleshy material hanging out of both openings. I returned to the hospital on the morning of Jan 28, 2024, the ER report noted: “Significant serous discharge with extruded ?tissue”. I was admitted, and the nurse on the unit reported “ Writer removed the dressing and found a puddle of bile with mucous underneath. Cleaned with moist towels. Incision had large attached lump of slough. Writer cleaned around it several times. Skin surrounding was excoriated and painful. After a few wipes, the slough piece lifted on the right then completely, to reveal a crater-like hole approximately the size of a golf ball and about 2cm deep”.

Not sure why this happened, things appeared to be healing before I took the Creon, and that was the only major change I made when the problem started. The only warning there seems to be about it use is “ Do not crush or chew the Creon capsule or its contents, as they may cause irritation in your mouth”. The Creon is use to break down fats, carbohydrates, and protein. If it can cause irritation in your mouth, what happens if it gets into a fistula, and then in contact with unprotected tissue? Is there a stronger warning need for this medication? I still have a large scar where the fistula was, the tissue is much thinner than the surrounding tissue, and my abs are much weaker. No idea if there is more long term damage, or future complications. I feel I need to share this information so it may lead to further discussion, or research on the issues I experienced. A more complete account of the complications may be seen here, and used only with written consent.

UPDATE Nov 24, 2025: I am having tenderness on the right side of the Fistula scar, it maybe form all the internal damaged caused after I started taking Creon. 



 
Jan 5, 2024, day I was discharged.

Jan 19, 2024, day after I started taking Creon.

Jan 26, 2024.

Jan 27, 2024.

Jan 28, 2024. ER picture of fistula.

Lump of " Slough" that came out of fistula Jan 29, 2024

Fistula, Jan 29, 2024.

June 6, 2024, after fistula healed over.

#Creon, #tissue, #damage, #enterocutaneous, #fistula #Whipple, #surgery, #research, #sharing, #medical, #information

Comments

Popular posts from this blog

A short summary of the Whipple Surgery, Pancreaticoduodenectomy, and the complications.

  A short summary of the Whipple Surgery, Pancreaticoduodenectomy , the complications, and 140 day Hospital stay that followed. Most of the information is a direct copy from my Hospital discharge report (spelling mistakes have not been corrected). I have added some other information, those notes are in italics. Warning medically graphic picture links included. A more complete summary, with pictures maybe seen here : https://fap-whipple-report.blogspot.com/2025/01/a-summary-of-key-events-for-whipple_10.html I had the Whipple Surgery in Nov 2023, it seemed to go well, 4 hrs of less in the OR. Normal as it could be the 1st few days, mild pain, walking as often as I could. Nov 24, 2023 Nurses note “ Abdomen +++ distended and firm.” “ Patient now complaining of 10/10 pain and laying in bed in fetal position holding abdomen.” “ Pending CT, form completed, IV access available.” Nov 26,2023 Nurses note “ CT abdomen pelvis ordered on Friday. Still not done on Sunday. Action: I spoke...

The importance of advocating for your self.

 I went into the Whipple Surgery , Nov 17, 2023, with the belief that I would be home in 7 days and recovered in 3 months. The surgery it’s self went okay they tell me, but 4 days later I developed a pancreaticojejunostomy (PJ) leak , followed by hepaticojejunostomy (HJ) leak and there were delays in acting on these complications. It got so bad 2 of my close friends had to come in and talk to the medical team to find out why a CT scan ordered on Nov 24, 2023 still wasn’t done 2 days after it was ordered. By the time the CT scan was done things had gotten much worst and it was the start of a very long recovery . This when I started to notice it was very important for me to pay attention, advocate for my self and my health care. Nobody knows your body and how you feel better than you.  Unfortunately I didn’t start making notes or taking pictures until I was discharged, Jan 5, 2024, after 50 days in the hospital. I was sent home with 2 drains and a very active leak that was com...

Dec 15, 2023 update.

 Originally posted to social media Dec 15, 2023. " Friday update. Day 28, back on full fluid diet, but only able to drink very little to start, took me all day to drink an Ensure, but wow was it good lol. One drain removed this morning, 2 still in(one active), CT scan ordered and waiting for that. The medical team hopes the CT scan may show where the fluids is coming from. Goal is to get me on solid food, off the IV TPN feeding and able to pass it through the digestive system. Still going slow and steady."   Dec 14, 2023.   Dec 15, 2023.