Posted 5/17/2012 12:32 PM (GMT 0)
Hi All,
I'm new to this site, however not new to Crohn's Disease. I have recently found some comfort here, just listening. I was diagnosed with Chrons in "87. Since then I've had multiple surgeries, like most here have. The usual - abscesses, and fistulas, side effects from this and that... I have been living life with an Ileostomy for the past 20 years. The quality of my life so improved after they got all that out of me. We kept my Rectum intact, just incase....However, my sphincter muscle has been cut into so many times that I really don't see that happening. Which brings me to why I'm writing.
Three years ago, I ended up with a complete Hysterectomy. At that time there was a Hernia that had some how looped around what little part of small intestine I have left. Before it inferred with my Stoma, I told them to fix it while they were in there. Here we go....My body filled with infection, basically rejected the mesh they put in for the Hernia. So, decided to leave me open with a Wound Vac. After 6 surgeries within 6 months, we finially got a closure! I have been draining since. I never had Hydranitis before, now I have outbreaks all over. The site from the Hernia repair constantly drains.
I'm sure that most of you can relate, I needed so time to be left alone. In hopes that this thing would heal on its on. My docs here all told me to be patient. Yea, right! I finially consulted my Colon Rectal Specialist at Cleveland Clinic. He did my Ostomy years ago, and I trust him. I was there this past Monday. He has scheduled surgery for July.
In a nutshell....The Mesh needs to come out. He wants to use a Bio Med Mesh. Can't believe my docs here let it go this long. Possibly relocate the Stoma, and go ahead a take my rectum. My fear is going through - what I went through 3 years ago. It was awful, the wound was so deep, the pain was horrible during the changes. It was the first time I had a Wound Vac, and swore it'd be my last. He has brought in a Plastic Surgeon for closure, which I've already consulted. He seems fairly confident he'll get a closure (it's just staying that way!). I've been cut so many times, theres very little muscle for him to work with.
I've been through alot. But, I live my life with a smile on my face. I am so thankful for the quality of my life, in comparison to years ago! My Chrons is doing okay. I just cant handle this drainage, obviously after three years we have to do this. The infection is running ramp-id. I'm frustrated, that I have to do this again though. I'm upset with my doctors here. If the wound stays closed, I'll be fine, but if it don't, I just don't know if I can handle it again!!!
Thanks for listening,
Kelly