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

Labels:

Comments

Post a Comment

Popular posts from this blog

Getting my strenght back after a Pancreaticoduodenectomy, The Whipple Surgery.

 The  Pancreaticoduodenectomy or "The Whipple" , Nov 2023, went okay they tell me, but after I developed a pancreaticojejunostomy (PJ) leak, followed by hepaticojejunostomy (HJ) leak, gastrojejunostomy (GJ), and a stubborn fistula. The resulting complications , leaks, and fistula did so much extra damage to my body, and abdominal muscles, I lost most of my core strength, and flexibility. I was very discourage and worried my quality of life was going to change more because of the complications, than from the changes to my body from the surgery. I told my friends if I can walk, and eat everything else will be a bonus, I just wanted to get out of the hospital, and get on with my “new normal” life. I still have a golf ball size scar in the middle of my incision, from the fistula, the tissue is sunk in, and much thinner the the surrounding tissue. I am concerned about future problems, like hernias, but live a very active life so have to balance getting stronger, enjoying what I li...
Post a Comment
Read more

Remembering my Dad, Feb 12, 1980.

 On the  45th eve of my dad’s passing, I was reading some hand written notes by my mother. Talking to dad on one of his last days. I was struck by a few lines that stated dad was upset that on one of the last time I was to see him I had a very blank look, and wasn’t showing any emotion. But inside I was crying and no idea why I didn’t show it. I have lived with this guilt I guess from that day. We did get to visit one last time and he told me he was proud of me, I told him I would never forget him. He was funny, kind, and a gentle soul, always wanting to help those around him. We were close growing up, but somewhere along the way I started to rebel and pretend I didn’t like to hang out with him doing chores around the yard, but honestly these were my favourite times. He had a habit of making up songs, one was called ‘Scott of the Arctic”, he was singing it one day and for some reason I told him I hated that song and never want to hear it again. I think I wanted to go play with...
Post a Comment
Read more

Jan 29, 2025 double track fat bike ride, exploring in K Country AB.

Jan 29, 2025 double track fat bike ride, exploring in K country AB. Beautiful spring like temps. 1 st time on these trails, can't wait to go back and ride more. The days leading up to this adventure had been very emotional. It was a year ago, Jan 28, 2024 that I was readmitted to the hospital after complications from the Whipple Surgery . I had no idea when I went to ER that it would be the start of a 90 day Hospital stay. What a difference a year can make, this ride helped get me out of the funk I was in. I love riding my bike. Things were seeming to be improving, the leaks and enterocutaneous fistula I had seemed to healing, and I was starting to eat more to get my strength back. On Jan18, 2024 I was prescribed Creon, a pancreatic enzyme, to help with digestion. After taking the Creon for a few days, things started to go poorly. I had strange feeling in my stomach, and the fistula went from a small pencil size hole, to a golf ball size, with a large piece of “slough”, tissue ha...
Post a Comment
Read more