Friday, October 10, 2008

My Crohn's Status Update for October 2008

I've read posts by other Crohn's bloggers about how they are feeling and what they are going through, and they are often tales of mind boggling pain and dozens of trips to the washroom. I'm so fortunate not to be having those particular problems, but rather am dealing with other 'fun' issues, so I figured that it would be worthwhile to write about my current situation.

It's about 7 weeks since my surgery to have an abscess which formed around a perforation (fistula) in my small bowel drained. The 5.5 cm abscess was drained, I was put on antibiotics for a couple weeks (done now) and my now empty abscess hole was packed with gauze and I was discharged under the care of a home nursing agency. Thank god the government pays for this service! Over the last 7 weeks, the wound has been packed with a smaller and smaller amount of gauze, Silvercell, Iodosorb and various other cool products which fight infection and promote healing. I'm also now applying for a new product called Prisma that contains collagen. Anyway, what once was a large wound into which about 2 feet of gauze was packed... is now a 1.5 cm deep hole as narrow as a tooth pick. Needless to say, packing this narrow hole is rather painful, but it's necessary to ensure it heals from the inside out. Luckily I'm down to having a nurse come only 3 times per week. Thanks to Iodosorb which fights infection and lets me keep the same gauze in there longer. Keeping a wound warm, moist, and un-bothered is the best way to help it heal. Frequent fussing is not good. It also allows me to go in to the office to work on days I don't have a nurse (I work from home on the days a nurse does come). Thankfully I've been able to continue to work full time.

While my wound is slowly healing... it still requires me to have a good size bandage on my abdomen which collects the blood and other oozing fluids. I'm struggling with the fact that this makes me feel hugely unattractive. Sometimes it even smells like stew for some reason (no, I don't eat stew), which compounds this problem 100-fold. I'm sure my wonderful boyfriend is noticing that I've been more distant, but I find it nearly impossible to feel attractive and affectionate with a big stinky bandage on my stomach covering a sore, gauze filled wound. I don't know what I would do if I ever needed an ileostomy or those other nightmarish procedures. That is my absolute biggest fear at this point. I try to think of it as being better than suffering pain or even dying... but it's still a horrible fear.

To make matters worse, my relationship is still on the new side... so I feel horrible that I can't be my normal outgoing, upbeat, and affectionate self. Especially since he's been so supportive and positive about this whole ordeal, and seems totally ok with having a Crohn's-y girlfriend. I feel like I'm just putting my life on hold, waiting for the wound to heal so I can move on with my life, the further medical tests I need, and the treatments my doctor wants to try. It's all riding on this wound, so it's become a hated nemesis. I just wish I knew if there was still any stool present in the drainage, like there was at first. Then I could at least know that the fistula had healed. But now with the blood, the brown Iodosorb and the yellowish natural wound fluids, it's too hard to tell if there's any stool present. Maybe that's the stew smell? I don't think so however, and my nurses say it looks good and that if there is any stool, it's a minuscule amount. So I guess that's good.

Besides my wound troubles, I'm still fighting with the side effects of the Prednisone despite having been off it for a few weeks now. My hair is still falling out in alarming amounts, I've got extra acne and fuzz on my cheeks. Not cool. So if I'm feeling unattractive- you can understand why. I'm obsessively wondering when these things will go away and if they will at all. Will my hair thicken back up? Will the peach-fuzz fall out or do I have to wax it out? Etc. It's maddening.

I've also been making a few trips to the washroom each day. Mild diarrhea has returned, but nothing like that described by other Crohn's sufferers. But enough so that it makes me dread having to use the restroom at someone else's house. Luckily it's about the same as it has been for the last 7 years of my life, so I'm not too put out by it.

Luckily my pain level has been about a 1 to 3 out of 10. So that's pretty darn good. I think most of the pain is coming from the wound and not the internal Crohn's thankfully. So pain is not a very big issue for me, but tiredness is. I've always had a problem with going to bed early enough. I tend to get deep into a book or something that makes me lose track of time. So, even though my recovery requires EXTRA sleep, I'm still probably not even getting enough for a normal situation. Part of my plans for the short term is to get to bed earlier. I'm yawning way too much.

Overall I think I've been feeling pretty good physically. It's the emotional things I'm struggling with. Feeling kind of ugly, and not knowing what my future holds with this disease are particularly hard. Luckily when I get too sad about it, I can look on the Bright Side at all the things I have to be thankful for, and that helps turn my mood around. From reading other blogs I also know that it could be much, much worse... so I'm thankful it's not.

Crohn's is hard, both physically and emotionally, but when I read stories of other sufferers, I am always inspired by their courage and determination. It's partly because of that inspiration as well as from a desire to be proactive and help find a cure... that I'm going to be organizing a fundraiser shortly. It will go through the official CCFC and CCFA websites, but I'm going to collect a tally of the donations that people make. I am setting up a web page all about it, and a form people can use to tell me about their donation so it can be added to the tally. Once I have this ready, I'll post it here. So if you're planning on making a donation soon... just hold off and you can join my little group donating event! Stay tuned!

And to everyone reading my blog- thanks for visiting- and stay tough! Your comments and messages mean a lot- thanks!

1 comment:

  1. Hang on a little longer, Bright Side. All will be back to normal soon. I guarantee it! You may smell something but I would bet no one else can. The Prednisone side effects will fade but it takes time. It takes a drug twice as long to get out of your system as it does to get into your system to start working so however long you were on it, it might take at least double that for the effects to leave - but don't lose hope because you will return to your regular self soon! Be grateful that your boyfriend hasn't jumped shipped. It takes a strong person and great love to stay with someone with our specific problems and if he understands and is patient with you that shows a lot about his character. And no matter what the outside might feel like and what you may think you look like it doesn't matter in the eyes of those who truly love you. I don't even know your name, let alone what you look like, but I can tell you that you are a beautiful person! You can fight this with shear determination and the strength of God who loves you! E mail me anytime you want at
    HUGS & lots of love - Jenni