Sunday, January 10, 2010

Alarmed. And New IBD Support Chat.

New IBD Online Support Chat

UPDATE: Jan 14: Got out of the hospital in the nick of time. The chat is still on!

I'm organizing the second online IBD support chat. For those who didn't join the first one, the chat is open to those with Crohn's or Ulcerative Colitis. I set up a chat window on a webpage where we can all discuss our experiences, ask questions and offer support. If you would like to join, please let me know either via comments to this blog, or via email (see at right) so I can get a feel for how many people will be attending. I am planning it for this Thursday, January 14 at 7:00pm EST (that's GMT-5:00). It will be here at this webpage:

There is a bit of a warning about this scheduled chat. Since I am in the midst of a big flare up, the chat is dependent on me not being in the hospital and feeling well enough to set it up and host it. So if you visit that page at the scheduled time and don't find a chat window there, you'll know why and I will reschedule. *knocks on wood* Hope to see you there!


Well, the ticking bomb in my abdomen has decided to go off again. Over the Christmas holidays I started feeling the return of pain in my abdomen. I shrugged it off as just holiday stress and food. And more food. By boxing day however it was dramatic and the day after I went to the hospital. To make a long story short I've been back 2 more times since then, and after an abdominal Xray, CT scan, and ultrasound it was pronounced that I have a trivial sounding 'micro' abscess. Micro?!? As the picture here will show, I think 'micro' is some kind of sick joke.

I figured since so many of my fellow bloggers like to share various pictures (often disturbing) I would try for my own disturbing Crohn's picture of the week award. As the picture shows, my new abscess is right behind the scar from the surgery to treat my previous one. The scar which is normally recessed a few millimetres into my skin, is now puffed out and sitting on top of a red little hill about an inch and a half long (the pen in the photo is for scale).

I was given two antibiotics and beefy pain killers. According to the hospital and my G.I. the antibiotics will solve the abscess problem. Really? It seems absurd. As for the painful flare up of inflammation in my ileum my G.I. and I discussed options. Humira and Remicaid came up but I was leary. Nothing will repair the damage already done, but we need to get this inflammation under control. Then, the dreaded P word came up. That's right- Prednisone! I vehemently said that I would not take it again. Not after the fluttering heart beats, fear that I would fall asleep and have a heart attack, hair falling out, and many more side effects. He then suggested Entocort. It is also a corticosteroid but in a capsule form which targets the intestine rather than blanket your entire body with it. He said it generally has much fewer side effects. It's generic name is Budesonide. I know what you're thinking - why didn't he give me that the first time around? Why prescribe Prednisone at all anymore? Who knows. So... I reluctantly agreed.

I've also been referred to a surgeon, the woman who did my surgery a year and a half ago. I'll ask her whether the lump will actually be taken care of just by drugs. However, we will likely be discussing surgical treatment options for the root problem. I must admit, the thought of removing this 'dead' piece of ileum (10cm my doctor tells me) is attractive at this point. Extreme pain, a very restricted diet, these episodes.... a resection is seeming more and more tempting. I just want to live normally for a change. It's a scary option though.

So, in the meantime, I'm taking a bucket load of drugs each day, suffering alarming pains and strange sensations, and waiting for the surgeon's office to call me. Alarmed is the word.


  1. so sorry to hear that your new year has opened this way. the little dude on your tummeh definitely wins Most Grotesque Model of the Week. best of luck with Budesonide; almost everything i've heard makes me wish my GI had thought of it before putting me back on Prednisone.

  2. While checking my daughter's blog I noticed that you wrote a new entry. Please know that there are non-chronies out there thinking of you and wishing you well. Kathryn's Mom

  3. I am on the Remicade right now and I have taken it before. It always works wonders for me, but I do get hives and other allergic reactions about a week later. I have hives and a silly looking swollen lip right now as I write this. Also, don't be afraid of the resection. I am not sure if the antibiotics will help with the abscess since once you have that it is pretty much trying to seal it off from the rest of your body. It may just have to be drained.

  4. Hi Bright Side,

    If still on, I can do a chat on Thursday, but unfortunately will probably log on a few minutes late (7:15 pm EST), if that works (?).

    I'm so sorry to hear of your abscess. This disease definitely has an emotional toll: always wondering when it's going to get "bad" again, as it inevitably will. I've been on Entocort a few times with no bad side effects: I hope it works and I'm pulling for you through this bad flare,