Crohn's Disease
I know, you're saying what does this have to do with web design? Absolutely nothing, but I offer resources about things that I have interest in and/or am passionate about and Crohn's is one of them. (I could have just said it's my site and I'll put what I want on it :) hehe) Here you will find a little about me and my battle with Crohn's, information about Crohn's, and links to sites that deal with Crohn's disease.
I was diagnosed with Crohn's Disease in 1992 after about two years of stomach problems. The Crohn's was found by accident when they opened me up thinking that I was suffering from an appendicitis, unfortunately they found the disease. Crohn's Disease is a disease of the gastrointestinal tract (here is more general information about IDB). I have had one surgery to resection the diseased area and have been hospitalized three times and spent many nights in the ER since June 2000 because of obstructions caused by the disease. It's November now, I've been out of the hospital for two weeks and I will start on TPN (Total Parental Nutrition, feed via vein) on Monday and have surgery within the next couple of months. I've put together these pages as a resource for other people who suffer from Crohn's (my fellow Crohnies).
Update: On November 12, 2000 I went into the hospital to be hooked up for TPN. For many months my belly has been very distended when they admitted me they took another x-ray to see what was happening. On the 13th the nurse came in and told me I was NPO and I had to stay in bed (NPO means that you can't eat or drink anything). Evidently they found something on my x-ray. Of course I was scared to death because they wouldn't tell me what and I had been feeling worse than I had ever felt in the eight years that I've had Crohn's. My doctor called a few minutes later to tell me that my intestine had perforated and I had to have surgery immediately. In some ways it was a relief, the thoughts of cancer had been going through my head and I had been putting off the surgery for months hoping that Remicade or one of the other drugs I was poisoning my body with would work. Next came the surgeon to tell me he was going to happen. He told me of the possibility that I would end up with an ileostomy and I begged him not to do it to me. An ileostomy is when your small intestine is basically disconnected from your colon and an opening is made on the side of your stomach for your waste a bag is then attached to collect it. Within an hour of the nurse coming into my room to tell me that I was NPO I was in surgery.
I woke up at about 4:00 p.m., thankful to be alive and then I reached for my tummy, no bag what a relief. I was surprisingly coherent from that point on, I barely slept. A few days later over the weekend an on-call surgeon came to see me and actually put me on clear liquids. I was surprised by this because you normally have to pass gas before you can have any food or drink and I hadn't done that yet. On Sunday he moved me to food I happily eat until Tuesday morning. The doctors were ready to release me.
Tuesday afternoon I started throwing up violently. I don't remember much, I was rushed to x-ray, my surgeon came back in and told me that my intestine had perforated again at the original surgical location. He would not be performing the surgery, another surgeon would be coming to see me. Enter surgeon number two. He introduced himself, told me that he had to go in right away and that I would have to have an ileostomy because he could not reconnect my colon to my small intestine because it would more than likely not hold and they needed time to heal. I was devastated and the begging began again to no avail (he was a tough little sucker). I was rushed back to surgery.
Today is December 28 2000, I'm home. They say the second surgery was due to the high dose prednisone I had been on (prednisone slows the healing process). The recovery has been a lot slower than my first surgery in 1992 and everything is a chore. I'm adjusting to the ostomy and I will have reversal surgery in March (I'll be reconnected and my ostomy will be removed). I've lost about 50 lbs in a little under two months and I can't gain any weight. This wouldn't be so bad, but the surgeon wants me to gain weight before I have the reversal again because I will lose more weight. I ended up in ER once after the second surgery because I my magnesium and potassium levels dropped and now I have to have weekly IVs.
I don't want to sound like it's all bad, I'm pain free for the first time in two years and I'm thankful for that. The ostomy is temporary and it will be reversed soon. If I don't gain weight, oh well, there are worse things in life! ;) I miss my work, my co-workers and most of all my students, but I will be back soon and causing more trouble than ever. :)
Update March 1, 2001 - I had what I believe to be my final surgery (for the time being) on February 23. My ileostomy was reversed and I'm all back together. I'm having a lot of pain right now, but that should subside in a couple of weeks. Thanks to everyone for your notes of concern.
Update June 15, 2001 - I have been back to work now since April 7. I'm feeling great, no major signs of Crohn's. My energy level isn't back to normal yet, but that's to be expected.
Update August 8, 2003 - I haven't updated this page in so long. I guess that's because I'm doing pretty well. I have pain in the gut and the joint pain is still there, but for the most part, nothing major. I find that my hobbies, photography and gardening, are good distractions during painful moments. Work is extremely busy, but I haven't had to take any time off for Crohn's since I returned in April of 2001. I've tried Remicade again, but it gave me breathing difficulties. I really like to breath!
Update July 2005 - I am doing well, life is good. I have some new ailments that the doctors say are related to my Crohn's like Ankylosing Spondylitis and mold and other allergies, but for the most part my Crohn's has been in remission since 2003.
I take a lot of different medications (links) for the disease and I have to follow a restricted diet (links).
I'm very active with a group of fellow Crohnnies on the internet. We meet on Wednesday & Saturday nights in the ChronniesChat Chat Room (yes, we know it's misspelled! Click the link to enter the chat room, if prompted enter your desired nickname and any other information requested) at MSN to chat about everything (not limited to the disease and we get a little wacky). On Wednesday nights we have a designated chat topic and we meet at 10:00 P.M. EST. On Saturday nights, chat is open to any topic and we meet at 9:00 P.M. EST. Feel free to stop by our chats if you have questions or just want to meet the group. If you would like more information about the group, you can visit our home page http://www.tinkertech.net/crohns/. We use MSN Messenger to communicate within the group. For a download and installation tutorial that I wrote, click here.
We just opened a new message board for ChronniesChat at http://pub54.ezboard.com/bchronnieschat stop on by and visit us soon!
Crohn's Disease Resources
I'm still collecting links and resources, so if you know of a resource that you have found to be valuable, please e-mail me at putertutormail@yahoo.com. The links that I have collected give general information about Crohn's Disease. I have found some of them very useful, but I am not endorsing them in anyway. Always consult your doctor prior to trying any treatments that you may find on the internet or anyplace else.
Crohn's Disease Message Boards and Chat Info
Dez sent me many of these links - Thank you! You will find that some of these boards are more active than others. We just opened a new message board for ChronniesChat at http://pub54.ezboard.com/bchronnieschat stop on by and visit us soon! You will also find several e-mail lists for Crohn's at http://groups.yahoo.com/ (just do a search for Crohn's, IBS, or IBD). Don't forget to visit our chat page at http://www.tinkertech.net/crohns/ for additional information on our chat schedule.
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Last Updated:
December 19, 2006