Perianal disease: A timeline PART 4 (updated Nov 7, 2015)

Perianal Disease timeline part 4 cover
Share
Share
Pin
Tweet
Email
Print

This is the last entry in a four-part series on my perianal disease timeline, including the healing after my proctectomy. This post will be updated as I continue to progress with my healing. Part 3 can be found HERE.

5 months since proctectomy and beyond (April 2014 – current)

Healing seems to have slowed down as mid-April hits. The size of the wound hasn’t been changing and I still get discharge throughout the day, so a 2″x2″ gauze pad is still used to cover the wound. While I’ve been able to do everything, including using my stationary bike, having a small wound is still frustrating. The wound looks as if it simply needs to skin-over, but at this point, I don’t know how I can assist it further. I may speak with a WOCN (Wound, ostomy and continence nurse) to see if there are any tricks I can use. Since my next follow-up with my surgeon isn’t until the end of May, there’s still a long way to go before I can hear her thoughts. Perhaps by then, the wound will be closed up.


UPDATE Nov 7, 2015 (2 years post op): Over the summer, my wound has slowly healed, although at some point, I would feel burning and itching down there (heat and humidity, perhaps?).  At of Nov, 2015, my wound is pretty much healed, and I don’t use any gauze to collect drainage. On occasion, I do still have bleeding, as if the wound tears, but it’s manageable, and this will likely be as good as it gets.

UPDATE March 11, 2015: A lot has happened over the past several months, and it hasn’t been positive! I had that MRI on Dec 7th, 2014, which you can read about HERE, but the only good news was that there’s no fistula or anything like that going on. Unfortunately, a new wound opened up in December and it’s been sticking around ever since! I’m waiting for a referral to see another surgeon, and hope that something can be done to close this up once and for all.  I’ll update again if any significant changes happen.

UPDATE Nov 20, 2014: I went in to see another doctor, since the surgeon who performed my proctectomy is no longer practicing.  I went because I’ve been having pains around my rectal area, near the site where my abscesses and fistulas had really created a mess. She suggested that I get an MRI done to see what’s going and said there could be many reasons why I’m having pain, but since my wound still isn’t healed, it may be related to the problems I’m having.  I’ll be waiting several weeks to months in order to get in for the test, so until then… I wait.

UPDATE Sept 22, 2014:
There hasn’t been any significant changes in regards to healing. The wound still hasn’t closed up and I still keep a gauze pad on it to keep the draining from staining my underwear. I don’t expect any more healing at this point, but I don’t have immediate plans to get more done to the wound. I’ll likely wait until mid-winter/spring to make a decision.

UPDATE MAY 28, 2014:
I saw my surgeon again today. My hope that the anal wound would be closed up before this appointment has fallen short and I have to either give it more time, or accept that it’ll never fully close up , which means I’ll always have a gauze wedged between my butt cheeks. It was explained that because I had severe perianal disease due to Crohn’s that this is normal, however, if I choose to do something more about it, I do have another option. If I wanted to, I could go back to have the wound crapped with the hopes that it’ll cause new tissue to form and hopefully heal up. Of course, it could do nothing and I’m back to where I am now, so I’ll be giving it more time before a decision is made. In the meantime, she discovered that I still have a very small tunnel going into the wound and some silver nitrate was applied to it. She also told me that she won’t be practicing surgery come July and has accepted a new position in another hospital. It makes me sad that I’ll likely never see her again. She changed my life forever and I’m so grateful to have had her as my surgeon. I do wish her the best of luck.

As promised, here is the healing timeline I’ve put together. I hope that it offers some education value and shows just how successful this surgery can be in fixing the damage caused by severe perianal disease.

pdf_logo

DOWNLOAD HERE *GRAPHIC CONTENT* (UPDATED Nov 7, 2015)

(Please note that the color quality may be low when viewed through the browser. Download the full PDF for better quality).

QUESTION: Are you considering this surgery? Have you had it done already? What were your experiences?
Share
Share
Pin
Tweet
Email
Print

4 thoughts on “Perianal disease: A timeline PART 4 (updated Nov 7, 2015)

  1. Wow man! Those pictures are intense! I was actually wanting to ask you why you hadn’t had an ostomy reversal. I too have an ostomy from Crohns colitis (September 3, 2015 so I’m a brand new ostomate. Lived with what we thought was UC for 17 years until the pathology report came back…) and my GI and surgeon are hot-to-trot on getting me a reversal once my single fistula heals but frankly I am not sure I want to ever use my butt-hole again. I was curious why some of my favorite osto-bloggers hadn’t opted for a reversal, but I don’t even need to ask you now. I am so sorry you went through that it looks like it was terribly painful and here I am complaining about one singular tiny perianal fistula. Anyway… I love your blog. Keep doing what you’re doing. It makes us newbies not feel quite so alone.

    • Thank you.

      Yeah, my disease was so aggressive down there that the option to reverse it wasn’t even a consideration. Honestly, I don’t think I would have gone with a reversal, knowing that having an ostomy really isn’t so bad!

      I think that for people, reversal is always on the table, and some simply choose not to do it, while others (like me) don’t have much of an option when you weigh the pros against the cons.

      I wish you the best!

      Eric

  2. My son was diagnosed with Crohn’s at the age of 12 with no previous symptoms until bloody diarrhea and colonoscopy to tell us his colon was so damaged there was a very real fear of rupture. It did rupture 3 weeks later requiring emergency surgery and a colostomy. Seven weeks in ICU with a wound vac on his abdomen and many visits to the OR. Long story short, 2 years later, 2 surgeries, colon and rectum removed, another surgery to bring muscle from thigh up into the cavity that would not heal even with a vac and packing, over 150 visits to the OR, we are finally seeing some progress. We have been here at Seattle Children’s Hospital and Ronald McDonald House for 16 months and just had an exam under anesthesia 2 weeks ago and we are looking at only another 2 months to be completely healed. It has been a long long road with many hills and valleys but we are almost done. It was wonderful reading your story and knowing there are others out there that have gone through a similar life change. Thank you for your story. Q’s Mom

    • Hello “Q’s Mom”! Thank you for sharing your son’s story – he’s been through so much, but he sounds like a true fighter!

      I truly hope that your son will finally get some relief after such a long processes to get things under control.

      When I hear stories like yours, I can’t help but be motivated to continue advocating for those of us with IBD. While the general public may see Crohn’s as just a bad tummy ache, it’s pretty obvious that we can suffer much more than that!

      Please keep in touch and let me know how he’s doing in a few months!

      Eric

Leave a Comment