Perianal Crohn's- Will a stoma help

[Mallory92]

Hi everyone,

I'm a 22 year old female and was just recently diagnosed with Crohn's disease in the perianal area this past January and things have progressed relatively quickly. I've had three surgeries to remove abscesses and one to have 3 drains placed. I currently have 2 setons in place and I'm receiving remicade every 8 weeks, taking 6-MP daily, and on flagyl/cipro 2x daily. There has recently been talk about getting a bag placed temporarily to help with the healing process and I'm interested in knowing about your experience's and how it changed your life?

Any advice or stories would be greatly appreciated. Thank you

 

[DJW]

Hi. I just replied to you on the stoma thread but I'm happy to do it here also.

In a word...yes. Fistulas were one of the reasons I got my ileostomy. It gave me my life back. No regrets.

 

[Jay Woodman]

Hi everyone,

I'm a 22 year old female and was just recently diagnosed with Crohn's disease in the perianal area this past January and things have progressed relatively quickly. I've had three surgeries to remove abscesses and one to have 3 drains placed. I currently have 2 setons in place and I'm receiving remicade every 8 weeks, taking 6-MP daily, and on flagyl/cipro 2x daily. There has recently been talk about getting a bag placed temporarily to help with the healing process and I'm interested in knowing about your experience's and how it changed your life?

Any advice or stories would be greatly appreciated. Thank you

Mallory, I currently have been diagnosed with Isolated Perianal Crohns. I have 3 fistulas which are double tracts. So a total of 6 draining setons are currently in place. My colonoscopy is clear & my blood work (ie.CRP etc.) are also great. I am currently staying the course with the draining setons in place & no other medications at the moment. The setons are comfortable & I have no drainage with them. Do you have Crohn's diagnosed in the colon in addition to the perianal fistulas? OR is your Crohns also Isolated Perianal Crohn's with no other concurrent colonic presentation? I understand Remicade is usually helpful with healing Perianal Fistulas. Are you having further complications in addition to the three perianal fistulas? OR are these existing perianal fistulas complex?

 

[dgg]

Hi Mallory. I was diagnosed with perianal Crohn's five years ago and my major symptoms were fistulas. I had a very complex fistula, called a horseshoe fistula that's located high up and I wasn't a candidate for fistulotomy. I had three seton drains in place for several years while also starting remicade. Every few weeks I would have increased pain, with the setons not draining as well and I had to go back into the operating room about 12 times to try and relieve the issue. That course of action seemed to not be working and I was absolutely miserable, dealing with drainage and ongoing pain (not to mention going into surgery all of those times which interfered with my life).

When a doctor first mentioned the idea of getting a stoma to help, I was in tears. I imagined it being something horrible, but after researching it and speaking to others with positive experiences with stomas, I decided to try it. I have to say that my life is now SOOOO much better!!! I feel like I have my life back again since I'm not in pain. I have completely adjusted to my ileostomy and don't know if I ail try to reverse it since I'm feeling so well. I have to add that 3 months after having the ileostomy surgery I was still having some drainage and my surgeon then did a flap procedure (covering over the fistula opening) and a few weeks later my drainage stopped (almost a year ago today). Good luck and let me know if you have questions and if you decide to go the stoma route I'm happy to share my tips.

 

[smallfry]

Hi Mallory,
I've had a diverting loop ileostomy to give my butt a rest from abscess/fistula issues and constant antibiotics. Now I had many many years to make a decision and for that I'm very thankful for. I did however still have problems with abscess even with the loop ileo but we are all different. You also have some other med choices to go through if that is what you want, like increasing your remicade intervals or other biologics. So, I had many years to come into acceptance but when I had it done all I thought was why didn't I do this sooner?!! I do now have a permanent loop end ileostomy because I kept abscessing.
Here's a link to how my diverting loop ileostomy surgery went down, hope it is helpful to you: http://crohnic-crohns.tumblr.com/post/52921841409/diverting-loop-ileostomy-my-first-weeks-stoma

 

[Mallory92]

Mallory, I currently have been diagnosed with Isolated Perianal Crohns. I have 3 fistulas which are double tracts. So a total of 6 draining setons are currently in place. My colonoscopy is clear & my blood work (ie.CRP etc.) are also great. I am currently staying the course with the draining setons in place & no other medications at the moment. The setons are comfortable & I have no drainage with them. Do you have Crohn's diagnosed in the colon in addition to the perianal fistulas? OR is your Crohns also Isolated Perianal Crohn's with no other concurrent colonic presentation? I understand Remicade is usually helpful with healing Perianal Fistulas. Are you having further complications in addition to the three perianal fistulas? OR are these existing perianal fistulas complex?

Jay,
Sorry it's taken so long for me to reply. But no, my crohns is specifically located in the perianal area like you. I have had recurrent abscesses form but have not had one since about February, and lucky for me the setons were able to drain it but taking hot baths. However, I am still experiencing pain on a daily basis often after I use the bathroom. I've been experiencing a lot of pain this week and believe something else may be going on now. I'm sick of the constant pain and want some relief so I'm so unsure of where to go from here. Thank gosh for this support group!