Severe Perianal Crohns Disease Experience

Hello,

I am sharing my experience and hoping it will help anyone who is dealing with or has dealt with similar issues I have had over the years.

I have have had Crohns for 5 years and was quickly progressing with no healing. I failed on Remicade, Entyvio, and Humira. My Crohns was confined to my large intestine and was very aggressive in my rectum, leading to many fistulas and abscesses. My doctors said that my perianal Crohns was one of the worst that he has seen.

When I was first diagnosed with Crohns and was dealing with multiple perianal abscesses and fistulas, I decided to undergo a procedure for a temporary loop ileostomy to allow for my colon to heal. After having the loop ileostomy for 3 years, there was no healing in colon which I decided to have a colectomy with an end ileostomy. The plan was to have a complete proctectomy a year later, which I just had performed last week.

This last procedure was very nerve wracking as I was planning on having plastic surgery in addition to the proctectomy due to the old abscesses and fistulas. This was going to extend my hospital stay to 3+ weeks, which was going to be very tough with not seeing my family due to COVID. However, the surgery went significantly better than the doctor had hoped and performed the proctectomy with no plastic surgery. My doctor removed my rectum, sewed everything up, and reconstructed my perineum. I was discharged after 3 days (which blew my mind) and am currently recovering at home.

I have had a very long 5+ year battle with severe perianal Crohns and wanted to share my experience with others in case anyone is in the same situation.

All in all, my ileostomy has saved my life. I hope anyone who takes the time to read this can see that there are better things to come with the advancement of surgeries for Crohns.

Thank you all for your time!

Hello!

I do not believe that there was inflammation in my ilium, but not 100% sure.

I had zero issues with stomach issues my whole life up until I found out that I had C diff in August 2015.. I had severe d with blood, lost 40+ pounds, etc.. and the doctors eventually found out that through a colonoscopy I had Crohns. I am not sure if the C diff brought out the Crohns or not... but after finding out that I had Crohns, my main symptoms were severe d, really bad joint pain, inflammation of my eye, and multiple fistulas and abscesses. I also had severe scarring in my colon. Because of these side effects, doctors diagnosed me with Crohns.

I was on biologics before. I failed on remicade (built up antibodies), entyvio (lupus like reaction), and humira (kept getting skin infections and no healing in colon). Doctors decided to take me off all medicines after my colectomy last year.

This past summer when I met with my surgeon to prep for the proctectomy, he was still concerned about the non healing fistulas holes and wanted to try anything possible to avoid plastic surgery. He placed me on methotrexate as well as starting Stelara and the old fistulas started to finally look better and decreased some inflammation.. This led to the proctectomy to be more successful than originally thought and did not include plastic surgery (and was able to be discharged after 3 days!)

Let me know if you have any other questions. Happy to help any way that I can. Hope you’re doing well!

Post Edited (Jlang12) : 11/24/2020 7:16:08 AM (GMT-7)

Hi!

I’m so sorry you’re going through everything!

I was having severe joint pain and bad acne cysts all through crohns. Once I had the surgery and stopped all medicine, everything went away. I have not had one joint pain since having all of my Crohns removed and have not had any skin issues from being off medicine. I went through so much that I was just ready to get it over and done with and have my life back. Having 3 small kids under 3 was very tough leaving but I knew in the end it would be worth it. The hospital I belong to, I knew that my CRS was the top surgeon in the department and completed the most colorectal surgeries. My case was very tricky and he consulted other doctors across the country that he knew to come up with a plan to close the wound. The decision was to close the rectum from the inside and let it heal without plastic surgery. There is a chance that if it does not fully heal (which it has not fully healed yet, but I have had zero setbacks) I could potentially go in for plastic surgery to close the non healing wound down the road.

I hope this helps and good luck to you. Here’s to a better pain free future!