Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

genital lymphedema


Thu, October 03, 2013 8:45 AM

i have a 17 year old grandson who was diagnosed in 2006 with crohn's disease.  in short, he has tried virtually every drug therapy approved for children with little success.  he also has developed most every complication -- mouth ulcers, joint pain, bone fractures, severe psoriasis, p. gangrenosum, uveitis, perianal disease, kidney stones, pancreatitis to name a few.  two years ago he started a cimzia/methotrexate combo therapy.  shortly thereafter he was admitted to the hospital with a severe rash and accompanying swelling of his scrotum.  after nearly two weeks in isolation he was diagnosed with a rare complication in children -- metastatic cutaneous crohn's.  the lymphedema now includes the scrotum and *** and is frequently accompanied by moderate to severe pain.  he recently underwent surgery to "install" a permanent drain in a fistula that was discovered between the scrotum and the colon in the hopes that infection and fluid would drain from the area and alleviate the problem.  it was been over two weeks and the edema has only increased.  the plan is to discontinue the cimzia and restart humira (along with the methotrexate).  we have been advised by the physicians (and there are many who have been consulted) that our best hope of finding a treatment plan will be through someone who has experienced this because it is so rare (especially in children) that there is virtually no information in the medical literature.  i hope someone out there has some information that will help us. 

FPO lboling
Joined Oct 3, 2013

Thu, October 03, 2013 12:26 PM

 Reply posted for lboling.

I am sorry you are going through this.  It sounds oh, so familiar and I will keep you in my thoughts and prayers.

FPO k1mm1
Joined Oct 3, 2013

Related Topics

Trying to support my husb...
Author Image jessers
Joined Mar 1, 2022

Hi, My husband is 46 and was diagnosed in 2019 ....

read more

Legal system
Author Image Kimdanon1
Joined Apr 20, 2024

My son has Crohn's and is currently in jail. T....

read more