Wednesday, September 10, 2008

The Story So Far

This is my first post here on my new Crohn's blog, and let me preface it by saying that I'm creating this blog because I was inspired by another blog I came across: I'd Like to Buy a Bowel. Alicia's blog really cracked me up and it was inspiring to read how she can keep her sense of humour through all of the 'crap' that Crohn's throws at you. It made me feel like I wasn't so alone... to read someone else's honest story. So I figured if there was a chance that my story might help someone in a similar way, it's worth doing... that and the fact that I find writing to be highly therapeutic. As evidenced by my endless journals.

Anyway, my Crohn's saga (cue Star Wars music) began about two months ago, but prior to that I suffered for about 7 years under the un-diagnosis of IBS (Irritable Bowel Syndrome). Sometime in mid July I got what I thought was a flu. Fever, vomiting, felt horrible. I was barely keeping any food down, and watching my fever hit alarming new highs when I discovered a pain in my lower right abdomen, and a strange bump. Worried, I went into the hospital where I stayed for a few days and received all manner of tests including, the key diagnostic test- a colonoscopy (which by the way, wasn't so bad, I was unconscious the whole time). The on call GI doctor, who did the test, and asked me a bunch of questions about my 'IBS' history, informed me that I had Crohn's in a section of my small intestine. He couldn't get into it with the colonoscopy because it was so inflamed. He prescribed me 40mg of Prednisone once per day for 4 weeks, tapering off by 5 mg per week after that. The antibiotics given me at the hospital cured my fever, so they sent me home.

A few days later I was back in the hospital with sever pains... but I was given a new pain medication - Percocet - and told to give the Prednisone time, then sent home. Over the next couple weeks I started to feel slowly better and better. But by the middle of August the pain was getting quite bad, and I stared to notice a visible bump in my abdomen where the pain was. And I could feel something round and swollen in there. Then my fever started to rise and I noticed my heart rate was up. So it was back into the hospital for me.

Turns out that a perforation in my inflamed section of small bowel formed that when to the abdominal wall (skin). This is called a fistula. My body formed an abscess around it and that was the round ball. A big 'ole ball of pus. Lovely. My body was trying to wall off the hole and protect the rest of my body. I was told that it was about 5.5 cm in diameter and had to be drained. I was in agony.

An attempt to drain it via needle and ultrasound was a failure, it was infected and too thick to drain that way. A sample was sent for testing, and I was given lots more antibiotics, and told I would need surgery to drain it! My first surgery ever!

With the support of my wonderful boyfriend and my family... I went in for surgery and it was a pretty interesting experience. I was totally knocked out and woke up feeling sore and disorientated and my throat sore from the air tube. The next day I was given more anti-biotics and informed that I now had a bunch of gauze stuffed in a hole in my abdomen. This is to keep it open so that it heals from the inside out. I was sent home and they hooked me up with a home-care nursing service that now comes once a day to change the gauze packing, and my bandage.

My first day home was a big shock when I discovered (disclaimer- gross stuff coming up in this paragraph!) that there was not only blood, but stool coming out of my wound and leaking out the bandage. A call to the surgeon confirmed that this was normal, as the fistula was still there and it hard to heal those. The hope is that the leakage would get better and better. Gee- nice of them to warn me about this ahead of time. It was quite a shock, and really put a damper on my appetite. Not good, since I've lost 13 pounds, and need to gain it back.

It has now been about 3 weeks since the surgery. I was prescribed a new anti-inflammatory now that the Prednisone is almost tapered off (down to 10 mg this week!), called 5-ASA. I'm feeling pretty damn good. The pain is low, I'm eating. The bowels are moving regularly and solidly, and the wound appears to be healing and the leakage is getting less.

On the down side, it appears that the Prednisone is having horrifying side effects. Early on, when I was at the 40mg I was getting heart flutters and insomnia. Now those are gone but instead I've noticed my hair is thinning. It's frightening, and makes me even more sure that Prednisone is not as viable an option to me in the future. I'm just praying that the hair loss stops once the Prednisone is totally done, and that it comes back!! *cry*

Yesterday I had a different nurse fill in for my regular nurse (who I'm getting rather fond of and attached to- she so nice!). This new nurse is a wound care specialist and she said that gauze is like, so old school, and that she was going to pack me with a new product that contains silver in it and fights infection and encourages healing much better. It's called Silvercel. She said that with this stuff I'll only need a nurse every other day. She also said in 3 weeks I should have seen faster healing- so this will help. Today.... more than 24 hours later, I don't see the shadow of blood through the bandage like I have every other day, and didn't have to change the outer dressing myself. So maybe it has helped reduce the leakage. That would be great! I'm curious to see it when the nurse comes tomorrow.

So... that's my situation. My GI doc wants to send me for more tests once this wound has healed. And the 5-ASA is my medium-term treatment for now. It turns out I have some hardening of that section of bowel, so it may have to come out within a year or two. That's very scary! Thankfully, my boyfriend, family, and friends are all being so amazingly supportive. I couldn't do this without them!

Stay tuned... the saga continues...

1 comment:

  1. Hi there! I look forward to reading your blog. The fistula and abscess sound awful (so far, I've been spared those particular delights). I'm glad to hear you're recovering from those.

    I'm sure your hair will come back after you're off the Prednisone. Mine thinned, too, but after some months was back to normal (better absorption of nutrients and not having a pus-filled abdomen helps with that, too, I am sure). Don't forget to take your calcium supplements every day! My bone density dropped drastically with the Pred, so anything you can do to slow that side effect, the better.

    I hope you are feeling as best you can!