 Welcome, intrepid space warrior! This is the place to find up-to-the-parsec information about Joe's intergalactic digestive battle (surgery). Joe will be updating it personally when possible, but volunteers will assist him when he is incapable of performing updates. To learn more about ulcerative colitis and Crohn's disease, please visit the Crohn's and Colitis Foundation of America website. If you want to e-mail Joe, use this address (please note that it has changed): joe@monkeydepartment.com NOTE TO AGGIES, PEOPLE LIVING IN ARKANSAS, AND WINDOWS USERS: The entries are in reverse-chronological order. Newest ones first. If you want to see the oldest ones, scroll to the bottom of the page and read upwards. News Section Special Reports: Battle Analysis, part 1 12/21/99: MERRY CHRISTMAS 8:23AM Shhh... I'm writing this from my office, so I have to type fast and get back to work. We took our Disney trip and had a wonderful time. While I was there, I developed what I guess was some mild pouchitis. Definitely nothing as severe as UC -- more an annoyance than anything else. The symptoms were increased bathroom trips and minor abdominal cramping. The j-pouch held together, and it was still no problem to travel. When I got home, my doctor put me on some Flagyl, and it cleared up within a few days. By the way, even with the pouchitis, I felt about 200 times better than I did with UC. Stay tuned to my top-level page, The Worldwide Center for Stupidity [note: The Worldwide Center For Stupidity is not currently active. Visit this link for Joe's website as of May 2002.], for details of my Disney trip. I've got to finish writing it up and scan the photos. It should happen within a week or so. -Joe 11/20/99: CURED! 1:00PM I think I'm ready to say that I have been cured. My guts have settled down after the surgery now, my appetite has come back, and I am eating more adventurously. I had heard from my doctor, and many j-pouchers to expect a period of "bathroom problems" -- incontinence, nighttime leakage, etc. Other than the first few days, I haven't had any of that. Last night I went out with some friends to IHOP and ate a tremendously unhealthy pile of biscuits, gravy, hashbrowns and pancakes -- washed down with coffee. Yes, coffee. Sweet, sweet coffee. I have not tasted this glorious substance for almost eight months. Now I can drink it again, finally. So I guess there's really not much else to say. The only reminder of my recent ordeal is the incision, still a little bit sore, with sutures ready to come out. (They are starting to irritate the surrounding skin.) I have 100% control of my bodily functions, I can eat whatever I want, and I feel wonderful. I would feel totally comfortable eating a large spicy meal, then getting in my car and driving far away from a bathroom. For the first time in my adult life, I am in good health and good spirits. My life has truly begun again. I probably won't be posting any more updates to this site, since I feel like the nightmare is over. Yesterday I went through the house and started getting rid of all the "sick boy" accessories I had collected. All the leftover ostomy supplies -- gone. My shower bench -- not needed anymore. The portable bin of medication that I kept by my bed -- relocated. Anything to remind me that I was feeling so terrible has been put away, and I hope to either donate it all to charity or find a friend or relative who might need it. As final evidence that I am feeling wonderful, I have scheduled a quick, spur-of-the-moment trip to Disney World. We'll only be gone a few days, but I think I have really earned this trip. We really need a mental recharge, SOMETHING fun after eight months of misery, incisions, needles, hospitalizations and pain. Immediately following the trip, I'll return to work. (I'll need to... after the Disney trip, I won't have any money left!!!) I am so very glad I had this surgery. To those of you living with ulcerative colitis: please read this site carefully. The entries are in reverse-chronological order. At the bottom of the page, you will see how very sick I was. I was absolutely miserable. After the surgery, I had a very difficult time. There was a lot of pain, and a lot of emotional adjustment to the ileostomy. I'm not going to tell you to have the surgery. That is a personal decision for you and you alone. All I can say is, I lived for ten years with severe diarrhea and constant abdominal pain. I had to plan my schedule around the availability of a toilet. There were so many things I couldn't do, because they involved long car trips or being away from a bathroom. I had no energy. I felt like I had the flu all the time. I stayed up late at night, unable to sleep because of abdominal pain and diarrhea. If this sounds like you, please talk to your doctor. Please consider the quality of your life, the dangerous medications (prednisone especially) and the risks of colon cancer. If you have questions, e-mail me right away! I will try to answer them. If you've got any extra money or time, please consider donating to the Crohns and Colitis Foundation of America, the organization that provides nationwide support for patients, and funds research into a cure for both UC and Crohn's disease. I hope that someday, the surgery I went through will be totally needless. I hope there will be a pill that you can take, that will cure you of Crohn's or UC instantly. I hope that someday, as an old man, I can speak to a gathering of doctors and patients, and tell them about how in the old days, they used to have to REMOVE YOUR COLON to cure UC! I hope the entire room gasps at this arcane, primitive practice because everyone will know the cause and cure for these terrible diseases. By the way... I still intend to compile everything together into an organized book or story of some kind. Hopefully within the next few months. And sometime, I'll be finishing the reorganization of the site. But I've got more important things to tend to right now... my life! Oh yeah... I've got pictures from the day of the second surgery. I'll post those sometime soon, but I'll have to take down some pics because I am running out of space. Stay tuned for that. My sincere thanks go out to Dr. Ernest Max, my surgeon, who did the actual work. Even though he thinks I have an "extremely poor pain tolerance" (which is admittedly true), I think the man is a genius. His work on this surgery was obviously the embodiment of perfection. My thanks also to Dr. Ian Sachs, my gastroenterologist, who came up with the diagnosis of UC (as opposed to Crohn's disease) thereby making the surgery possible. Dr. Sachs is a wonderful, caring, intelligent and patient doctor. I felt great having him on my side. Dr. Chinn, who is Dr. Max's resident? assistant? (I am unsure of her actual title.) She assisted Dr. Max, visited me in the hospital, and answered my questions when he was not available. Dr. Chinn is a wonderful, intelligent person -- very friendly and easy to talk to. During some extremely stressful times, her presence and reassurance made all the difference. My thanks also to the outstanding medical staff at Methodist hospital. I have been in a few hospitals during my lifetime, and Methodist is a really good one. The nursing staff of Dunn Tower, 8th floor, is a well-trained, friendly and helpful team. Did I ever mention that the food at Methodist is pretty good, as far as hospital food goes? It is! And finally, thanks to my wonderful sweetheart fiance, Jennifer. She had to watch as all of our plans for the year got canceled one by one, as I got sick and repeatedly hospitalized. Our wedding plans got junked, our vacation plans got trashed, our savings account got depleted, and I was not too fun to be around. She patiently waited through all of it, held my hand when I was in pain, did all the chores when I was too sick to participate, and not once did I hear her complain or say anything negative. She also helped me come up with some really sick jokes involving colons. Jennifer is truly the light of my life, the reason I was born, and the most excellent person I have ever met. Thanks Jennifer, I love you. Thanks everyone... See you in the real world... most likely in a Mexican restaurant or coffeehouse. -Joe 11/17/99: MAJOR IMPROVEMENTS! 5:01PM The site reorg is underway. I just needed to make things a little more orderly. I had been slapping new modules onto the old site until the whole thing looked like it had been put together with chewing gum and paper clips. Kind of like the Mir space station, or the Windows operating system. If you notice any broken links or anything that's not working right, please let me know. My health continues to improve. My digestive tract was NOT working quite right when I got home from the hospital. But the improvement over the past 36 hours has been quite remarkable. Most of the rumbling and bloating has gone away. The frequency and urgency of my bathroom trips has reduced as well. I'm still not quite where I'd like to be yet. And I'm still eating a very non-adventurous diet of bland, mild foods that are easy to digest. Incisional pain is still there, however mild and tolerable. It just feels like a very sore muscle. I am able to walk around pretty well, I just have a hard time bending over or sitting up -- anything that really flexes that abdominal muscle on the right side. All in all, I am extremely pleased with the outcome of this surgery -- only five days after! -Joe 11/15/99: BUSTIN' LOOSE! 4:19PM Hey everyone. I'm back from the hospital, feeling extremely groggy, tired and kind of crappy (just like last time). Just like last time, my sleep patterns have been completely disrupted -- I can't get more than 2 hours' worth. Also, just like last time, my appetite is completely screwed up, and my guts are churning. Must be the general anaesthesia or something. Anyway, I just wanted to say... thanks for all the support, I'm OK and the surgery went fine. In a few days, I will post all kinds of goodies, including details about the surgery, my initial impressions of the j-pouch, and PHOTOS of the preparation for and recovery from surgery! Yep, we snuck a digital camera into the hospital, much to the joy of the hospital staff. But you gotta give me a few days. The site needs a slight reorganization. These entries have been piling up here for months and months, and it's getting pretty ugly. As soon as I catch up on my sleep, I'll post good stuff. Until then... -Joe 11/12/99: THE FINAL SURGERY ARRIVES 12:25AM OK, today's the BIG DAY. I was supposed to be on clear liquids yesterday, then stop eating and drinking at midnight. So, at the stroke of midnight, I had a large glass of water. Now I'm NPO (nothing by mouth) until after my surgery. I'm not even bothering to go to bed tonight. It's a lesson learned from last time. Many reasons for this. First, the surgery is at 7:30. I'm supposed to show up at 5:30AM. I'm not very good at getting up early in the morning. Second, I probably wouldn't be able to sleep anyway. Not that I'm terrified, but I am nervous and wound up, which is to be expected. Another good tip for surgery: if you're a guy, get a NICE CLOSE SHAVE before you go in to the hospital. You won't feel like shaving for awhile, and it always feels better (for me, anyway) to have a clean-shaven face. I am really, really hungry. Clear liquid diets suck. I guess my hunger is a good sign, though. Before my last surgery, I was on a clear liquid diet and I didn't even care about it. I was too sick to even want any food. I've been told to expect some problems over the next few weeks, mainly "running to the bathroom" type problems. This is OK, it couldn't possibly be any worse than what I had with colitis. I'm sure I'll post an update within the next few days, hopefully by Monday. Just remember: no news = good news. (Actually, for you Great Space Coaster fans, it's "no gnus is good gnus" - Gary Gnu) I'm actually thinking I might even take pictures at the hospital, so I can post them. I think that might be kinda interesting. Nothing graphic, of course. Just a little pictorial story for the record books. Maybe. We'll see. Since I'm bored and it's late, I figured I'd fill some space with a few shoutouts to my friends. Chris and Phil - thanks for the re-introduction to astronomy. That was the closest thing to a religious experience an atheist like myself can have. I really enjoyed last weekend, and I hope we can do it again. I'm kind of hoping I'll recover fast enough to see the Leonids on the 17th (I think). And if you need any help making that theoretical star-gazing party happen, let me know! Devonie and Robert - You guys are great. Thanks for letting us basically invite ourselves over and create a party at your place, and thanks for letting us share in the fruits of your FANTASTIC grilling abilities, Robert! Thanks Dev for sending me bizarre e-mail throughout the day. Nina and Brandon - You kids are TOO COOL FOR SCHOOL. Thanks Brandon for loaning us your Dreamcast, buying us dinner and basically being so generous. Thanks Nina for the chili, bringing the videos, and being such a patient, calm and pleasant person, who is really fun to talk to. Patrick - Thanks for the toys and being a great gaming opponent. YOU NEED TO TRY THE DREAMCAST!!! Jennie - Thanks for being such a cool friend. Especially thanks for keeping Jennifer sane throughout all of this. Dawn and Jeremy - Thanks for keeping in touch, even though you're halfway around the world. We want to see you soon! Mom, Dad and Tom - You guys have been wonderfully supportive and helpful throughout all this. I couldn't have gotten this far without you. Jennifer - You are truly the reason I was born. Thanks for sticking with me throughout even the toughest and most unpleasant times. I really love you a lot. Your parents are very awesome, too! Those who I have not mentioned - This ain't no Oscar awards speech, so I've got to stop sometime. There are so many people who have expressed support and encouragement, or helped out in some way, I can't thank all of them. You know who you are. See you on the FLIP SIDE, suckas!!!!! Always recycle... TO THE EXTREME!!!!! -Joe 11/8/99: SURGERY SCHEDULED 6:44PM My surgery has been scheduled for 11/12/99, that's this next Friday. I do not expect this surgery to be as difficult as the last one. This will be the final surgery in the j-pouch procedure. After this, my top priority will be to heal as rapidly and completely as possible, then return to a normal, productive life. That is, as normal as I can be, considering what a weirdo I am. This surgery will be the reversal of my ileostomy and the reconnection of my intestinal tract. That will allow food to flow all the way through, and I'll be back to going to the bathroom the "old-fashioned way." -Joe 11/3/99: DERELICTION OF DUTY! 6:44PM Oh dear Lord. I just realized it has been more than a month since my last update! I've been spending my time eating tons of spicy food... recovering from a severe cold... going to (and throwing) parties... surfing the internet... writing music... wasting time and goofing around. I had a "Gastrografin" procedure done yesterday, which was the injection of contrast material into my j-pouch, followed by x-rays. If the results of those x-rays are good, I'll be scheduled for the takedown surgery -- the LAST surgery -- sometime very soon. After that surgery, I won't have an ileostomy anymore... I'll go to the bathroom using the "traditional" method once again. I am very much looking forward to that. I've received much e-mail wondering where I have disappeared to. I hope you'll be able to forgive my lack of updates. It's all because I felt so great!!! -Joe 9/24/99: ON THE TOWN WITH DOMINIQUE! 11:47PM Still feeling great -- although I had what I think was a brief episode of food poisoning. I had a Cherry Icee at K-Mart (not a good idea to begin with) and it tasted kind of funny. About an hour later, it came right through me, red food coloring and everything. For several days after that, I had very watery output, and felt weak and dizzy. I think I've pretty much recovered, but I am still carefully watching my diet. We went Back To The Zoo on Thursday because the weather was so wonderful! Last time, we only saw about half of the zoo. Getting into the zoo is cheap ($2.50) and we only live a few miles away, so we figured it would be a fine way to spend the afternoon. I am pleased to report a Dominique Sachse sighting. We were at Marble Slab on West Gray and Shepherd this evening, just before it closed (10:50PM). In strolls Dominique Sachse and her hubsand (who is a very, very, very, VERY large and imposing man). Due to the presence of the lethally huge individual, we all kept our distance. As soon as possible, I will bring you more information, like what kind of ice cream was purchased. -Joe 9/18/99: EVEN BETTER! 5:22PM Updates may come less frequently from now on, until just before the second stage of the surgery. Essentially, since I'm still just recovering, there's not a lot of new information to report. Oh yeah... We went to the zoo yesterday. Click here to check it out. Also, today we went to an art museum (the Menil Collection). I am really enjoying going out and getting exercise -- the weather has been freakishly gorgeous! Oh yeah, thanks again to EVERYONE who has been writing to me to compliment me on the website. I am really glad that people are finding this information useful. Still to come: part 2 of the battle analysis. I am still writing that, it should be up within a week. -Joe 9/14/99: STILL DOING WELL! 11:30PM This will be a brief update. I am still doing very well. I had an appointment with my surgeon, Dr. Max, yesterday. He is pleased with my progress, as am I. Still eating well, although I am now trying to cut down on the fast food. As I start to feel better and better, I want to restart my favorite hobby -- cooking -- and start making all my favorite healthy foods. I was told by my surgeon that it is extremely common for people with UC who have this surgery to put on a lot of weight afterwards, because they are no longer sick and can eat anything they want. I can understand that! Before the surgery, it was very difficult for me to gain weight. I could eat a lot of cookies, candy and cakes, and not gain a pound. I don't think that will be a problem anymore. I went on a long walk through my neighborhood today -- the longest yet. It was probably about 3/4ths of a mile. Tomorrow, I'll try to go to an Astros game at the Astrodome! I have solved the problems with the skin irritation around my stoma. I switched appliances -- I am now using a Convatec Durahesive appliance. But I think the big difference is that I am now using a product called Eakin seals. These things are incredible. It's made of a material that's like a sticky, waxy plasticine or play-dough. It's in the shape of a disc with a small hole in the center. You can mold it and shape it to match the contours of your body exactly. You get an incredibly secure seal, there are absolutely no leaks onto the skin, and the feeling of comfort and security is just incredible. What's more, the material itself is apparently medicated to promote healing of the skin underneath. Which is just what I needed! Anyway, no more itching or burning, no more discomfort. The redness is almost completely gone. I still have only been able to get the appliance itself to last 3 days before a change -- I'm told that's not too good. Oh well. As long as it's not uncomfortable, I'll settle for 3 days between changes. Another thanks to everyone who has written to me saying they like the site. I really appreciate your kind words, and I hope that my online ramblings might be helping some people who are considering this surgery, or have recently had the surgery. -Joe 9/6/99: LABOR DAY MEANS NOTHING WHEN YOU'RE ON DISABILITY LEAVE 8:54PM I went to Target today. It was the biggest, most physically challenging trip I have made since the operation. Lots of walking around! I bought a small satchel that I'll be using as an "ostomy travel kit" containing extra supplies. That way when I go somewhere, I can throw it in my car and have supplies ready in case I should need to change my appliance on an emergency basis. Also, I keep eating things that I would have avoided before the operation. I had McDonald's today for lunch. No big deal -- their cheeseburgers contain a paper-thin slice of beef. Practically no meat at all, actually. I am still really enjoying the fact that I am able to get in a car and drive somewhere without worrying about a bathroom. I had to worry about that for 10 years! To suddenly not have that problem anymore, is just like entering a new world. I feel like a kid in a candy store! By the way, I really need to put on some weight. Which I am doing, with considerable gusto! At the beginning of the year, I weighed 170 pounds, and I felt comfortable with that weight. Then, starting in March when I got really sick, I steadily lost weight, dropping to 140 by mid-May. After the surgery, I was down to 135. Thanks to my newly expanded diet, I'm already almost back to 145! Nevertheless, I'm really going to have to settle down with the junk food soon... And speaking of junk food, I have read that marshmallows are good for people with ileostomies, because it serves to thicken and slow down the output. Same deal with peanut butter. So I have been eating a few handfuls of marshmallows every day, and also the occasional handful of Reese's Pieces. The sacrifices I have to make for my illness! ;) Still having ostomy problems. The skin around my stoma is still terribly irritated. But it's weird, the skin at the BASE of the stoma, and immediately surrounding it (about 1/8"), looks pretty good. I think the stomahesive powder and non-stinging barrier wipes really helped. But there's a ring of bright red, irritated skin around the stoma that extends out about 1 inch. It itches and burns terribly. I don't know what's causing it yet. Perhaps an allergy to the Stomahesive paste... maybe an allergy to the wafer itself... maybe a yeast infection. I don't think it's being caused by a leak, because I inspected the appliance today after I removed it and the seal looked pretty good... REALLY good, actually. Interestingly, the irritated area seems to correspond exactly with the area where I apply the stomahesive paste. So maybe it's an allergy? It wasn't causing problems until recently, though! Too weird. I really want to solve this because it's driving me nuts! Before I had the surgery, I was not scared of having the ileostomy at all. I actually looked forward to it. Immediately AFTER the surgery, however, I had some problems adjusting to it. Ironically, before the surgery, the one problem that I feared was skin irritation, because I knew that I have very sensitive skin. I mean, just wearing a band-aid will sometimes give me a rash. I knew that gluing this disc onto my belly over and over again would probably mess my skin up. Looks like I was right... but there must be a way to solve this problem. If there are any ostomates out there who might be able to offer me some advice about solving this, please let me know! I'm going to visit my ET nurse later this week, but I want to get as many opinions & ideas as possible. OK, end of ramble. Sorry for all the gory details. I am trying to chronicle this in detail, to help others who might be considering, or recovering from, the same surgery. -Joe 9/5/99: THE ULTIMATE VICTORY 5:32PM I ATE AT CHUY'S MEXICAN RESTAURANT!!! This is one of my favorite restaurants in Houston. We met some good friends there (Devonie and Robert!) and I ate a decent-sized meal. We had a wonderful time. It was really good to see my friends again, too. By the way, I did not skimp on the hot sauce. I seem to have survived the journey! Could it be??? Could I finally be really cured??? Incidentally, I think I may have improved the skin irritation problems with my ostomy... This morning I changed the appliance and used a lot of stomahesive powder, non-stinging barrier film wipes, and karaya paste on the irritated areas. No itching or burning so far, and I have been walking around all over the place today! THINGS ARE GETTING BETTER AND BETTER!!! -Joe 9/4/99: STILL GETTING BETTER 11:44PM Still doing well... my appetite is REALLY increased, probably due to the fact that I am still taking prednisone. That's OK, I need to gain a little bit of weight. I have cut down on the fast-food Mexican meals, though, in favor of healthier stuff. Today's daring "miracle meal" was homemade chicken fajitas... low-fat, but I did use some really good salsa with them, so they were nice and spicy. Again, this meal would have been very painful before the surgery! I'm trying to get out and walk more and more. I went on my first public outing yesterday, to the pharmacy and to the grocery store, with Jennifer. I was VERY sore afterwards, and needed to take some pain medication and lie down. You kind of take those abdominal muscles for granted... they are constantly working, though, when you stand or sit in an upright position. You are always using them. Well, mine still get sore after I use them for a while. But I was very proud of the fact that, other than sore muscles, I experienced no other problems. My heart rate was good, my blood pressure stayed normal, I didn't get out-of-breath or break out in a cold sweat or feel like I was going to pass out. I just got sore. This shows that my cardiovascular system is in good shape! Also, I try to go for at least 2 walks a day... each time, I try to go around the apartment complex at least once. Now the bad news... all this walking around is made more unpleasant by the difficulties I am STILL having with my ostomy bag. I think they might be my fault -- I think I was cutting the opening a little too small. The result was some terribly irritated skin around the stoma. Now whenever I walk around or shift positions, my bag moves around and it irritates the skin even more. Every single step causes the itching to get worse. So I have been avoiding a lot of movement for the last 24 hours. I have purchased some skincare supplies, talked to my ET nurse, and I think I will be able to solve this problem soon. Once I get the problem solved, I think I will be starting a "normal" rehabilitated life very soon. As it stands now, it is just very unpleasant to walk around, due to the chafing of the appliance. Think about this... I have been sick, pretty much constantly, for at least the past 3 years. During that time, I have been unable to travel much, I have had to severely limit my diet, I have had low energy and I have felt terrible. Once I get out from under this surgery and adapt to my new bag, I am going to go absolutely nuts. There are so many things that Jennifer and I have wanted to do, that we have been unable to do. I could never go out on a spur-of-the-moment outing, like to the zoo or a picnic, because of my health. I could never do things like go for a drive, or a walk in the park, or a trip to the mall. I always had to know where the nearest bathroom was. I had to plan my travel very carefully, so I could take my antidiarrheal medication at least 1 hour before I was going to be in the car. Ideally, I would plan my meals so that my guts would be empty during travel time, eating only when I arrived at my destination. That is soon to be an ancient memory! -Joe 9/1/99: CONTINUOUS IMPROVEMENT! 11:40AM In the last 48 hours, I have successfully eaten a meal from Taco Cabana, a meal from Taco Bell, and one of those nasty El Charrito frozen dinners with enchiladas and tamales. The only problem was some mild heartburn. The Taco Cabana meal was especially spicy -- along with the chicken fajitas, I ate a container of their hot sauce by scooping it up with tortillas. Other than feeling very, very full afterwards, this caused ABSOLUTELY NO DIGESTIVE PROBLEMS OF ANY KIND. I am also out walking around more... Jennifer has been forcing me to walk! Yay Jennifer! Anyway, I have been walking around our apartment complex. Today I went around the entire thing once. That's a pretty decent distance. I sneezed today and it did not cause any kind of agonizing muscle pain. Those muscles are really healing now! By the way, here's a link to the Mac audio version of the Screaming Colon sound effect. Some people were having problems with the .WAV format for some reason. scream.snd 100k, Macintosh System Sound (PS... I think I may have fixed the WAV file, too... there is a problem with uploading files in MSIE 4.5. Stuff can get corrupted when it uploads, unless you use Netscape. So I re-uploaded it with Netscape... hope this helps.) -Joe 8/31/99: THANKS TO COLLEEN! 1:46PM I just realized that I have forgotten to thank my ET therapist, Colleen Reeves. She has really been an invaluable resource in dealing with this new body part. Thank you so much Colleen for everything you have done for me! -Joe 8/30/99: BATTLE ANALYSIS ONLINE AND MORE! 1:41PM I've posted part one of a multi-part in-depth chronicle of the j-pouch surgery. If you are considering the surgery, or if you are just curious about what it is like, you should read this. Battle Analysis: Part One Also, I have acquired exclusive audio of my colon being tortured to death! That's right! Immediately following the surgery, an angry mob of surgeons gathered around it and tortured it. They kicked it, stomped on it, abused it, and finally doused it in lighter fluid and set it on fire. A tape recorder was on hand for the final moments. The Death of the Colon (104k, WAV format) Enjoy! -Joe 8/29/99: THE HEALING CONTINUES 10:44AM Joe here, feeling better and better! I want to take a moment to concentrate on some of the GOOD things that have happened since the surgery! Liver Tests Returned to Normal: Ever since I had ulcerative colitis, my liver function tests have been elevated. This meant that my liver was slightly inflamed, probably as a result of the ulcerative colitis. (Ulcerative colitis can inflame other parts of the body as well.) Within a week of the surgery, my liver function tests returned to NORMAL for the first time in 10 years. Diet Improved: This is the part I am really happy with. I just ate a big greasy plate of biscuits, sausage and gravy for breakfast today. Yesterday I ate a nice big roast beef sandwich on pumpernickel bread with mustard and horseradish. Split-pea soup on the side! I am able to drink fruit juice again. These kinds of meals would have put me in AGONY before my surgery. Fruit juice alone would have given me horrible cramps. Day by day, I am slowly broadening my diet -- I don't want to go too fast. Coming up soon is the ultimate test: Mexican food! If I can handle that, I can handle anything. Really, I don't see any reason why I SHOULDN'T handle it! I also want to slowly introduce fresh fruits and vegetables into my diet. Those had been "Enemy #1" as far as my colon went. But I really love fruits and vegetables, especially squash, salads, apples and nectarines. I'll go slowly, but I really don't foresee any problems! I'm just supposed to chew the living daylights out of everything so it doesn't cause a blockage. Improved energy:My mental energy has improved. Let me explain this a little better. Before the surgery, the colitis gave me an overwhelming sense of fatigue -- a more profound tiredness than I can describe. I didn't want to do anything. My brain was in a kind of fog, because I felt so horrible. That fog has lifted, and I am actually feeling some initiative and sparks of energy again! Unfortunately, my body hasn't caught up yet. Yesterday, I went for a walk to my mailbox. I wanted to sprint there! Mentally, I actually felt good enough to sprint. Physically, I knew better than that, though. I won't be sprinting ANYWHERE for a while. I'll just stick to walking for now. By the time I got back from the mailbox, I was VERY sore, and pretty much out of commission for the rest of the evening. But the exercise felt very good! Looking better:I haven't noticed, but my family insists that my color is better. They say I had a greenish, sick-looking tinge, with dark circles under my eyes. Now they say I look much better. I can't really notice. But hey, I'll take whatever compliments I can get! Making peace with my new "cybernetic attachment:" It has been very difficult to adjust to the temporary ileostomy. For those of you who don't know, I will have an ileostomy until the second surgery, several months from now. The ileostomy drains waste out of my abdomen, bypassing the "under construction" area of my guts. This gives my guts a chance to heal. I have to tape a bag to my abdomen to catch the waste, then empty it regularly. Unfortunately, it can be a bit of a shock to wake up with a new body part -- especially a dramatic one like an ileostomy. My brother thinks it's cool... he feels like I've got some kind of new cybernetic attachment. "You're CYBER, Joe!" he says. But quite often, I just see it as a hideous sack of waste attached to my abdomen. Anyway, I was having a hard time, but I am getting used to it. I was having problems anytime I had to clean it, or change the appliance. Mainly because I am so squeamish! But I am learning to deal with it, and earlier this week, I was able to change the appliance with a minimum of fuss, without feeling scared or nauseated. I'm sure by the time I get totally comfortable with it, it will be time for the second surgery! Outpouring of support and love from family and friends: So many people have written and called to offer their support. It really means a lot to me. Thank you everyone. Each and every person who wrote or called are contributing to my recovery in some way. I would especially like to single out my immediate family: my fiance Jennifer, my mother and father, my brother Tom. Jennifer's family, especially her father Robin and her mother Ruth. All the people of the newsgroups alt.support.crohns-colitis and alt.support.ostomy. My surgeon Dr. Max, my gastroenterologist Dr. Sachs, and Dr. Max's resident Dr. Chinn. (Watch out, world, for Dr. Chinn! She's a force to be reckoned with!) -Joe 8/23/99: POST-BATTLE ANALYSIS 11:30AM OK, I'm back OUT of the hospital again... was kept overnight for observation and was released on Friday afternoon. I was having problems with dehydration that now seem to be solved. It's possible that I was just released a day or two early, and still needed some hospital care. Anyway, my appetite is returning, which makes it easier to stay hydrated and fed, of course. Sorry for the lack of updates recently. 100% of my energy has been devoted to recovery. This has been a very difficult ordeal (definitely the most difficult thing I have ever done) and it really requires some willpower and devotion to get through it. My thanks to all who have been there for me to help, especially Jennifer, her parents, my parents, and my brother. Thanks also to those who have sent me messages of support and encouragement. It really meant a lot to know that there are people thinking about me. I'm getting my staples out today. They really hurt... they probably have caused more pain than anything else in this damn surgery. Because they are READY to come out... as the skin grows around them, they start to itch and burn. OUCH! At some point in the future, I will be compiling the complete story of this entire ordeal, from beginning to end. Maybe within a month. Those of you considering this surgery... I urge you not to take it lightly. It has been a serious challenge. If I had realized exactly what I was in for, I might have put it off for a month or so, just to try to build up a little more strength, but I would have still had the surgery, due to the cancer risk. -Joe 8/19/99: THE EMPIRE STRIKES BACK 12:26 PM Joe returned to the hospital this morning around 5 AM. He is dehydrated, but this is hopefully nothing a day on an IV won't fix. I'll keep you all posted here on his status. I'm sorry I was too lazy to post, but Joe was released from the hospital last Monday (the 16th) early afternoon. We all started celebrating his victory, and posting seemed less important, I guess... My bad. If you'd like to drop him a line, I'll send messages along to him for you, as usual. Get well soon, Joe! -Tom 8/16/99: JOE RELEASED FROM HOSPITAL!!!! 8/15/99: JOE IS WELL ENOUGH TO POST Sunday Hello! It's me, Joe, finally writing in with an update. This must be brief , due to my still-low energy levels. After I'm out of the hospital, I will post a lot of gory details, but here's the summary: 1- Drugs work. I don't remember anything from Tuesday to about Thursday evening. I also did not feel much pain. If you are considering this surgery I can definitely offer some reassurance that the amount of pain involved has been amazingly low. The only problem is, I think they may have been a little too generous with the drugs, as I am still having dizziness and memory problems. But don't worry about pain - they take CARE of you! 2- I am now eating food! Also, my energy levels are increasing. I'm still super-sick, having all kinds of post-surgery fun. There is some abdominal pain and tenderness, the incision site is sore, and weird muscle pains. They are keeping me well-medicated for this, though. It will probably be a month or so before I am back to feeling like a normal human being. 3- Every time I look at that incision, I think to myself "My god, dude, I DID it!" The incision goes from about an inch below my sternum all the way down to my groin. It has lots of big staples all over it. 4- The pathology reports came in from the laboratory. My colon was SCREWED UP. It was loaded with what is called "high-grade displasia," meaning it was just about to go cancerous on me. So we removed this colon JUST IN TIME. That's the big news - the colon came out in the nick of time. 5- I don't know when I'll be out of the hospital. I don't know if I'm ready to leave on Monday. Maybe one more day. My thanks to ALL of you who have expressed support during this time. It has really meant a lot to me. If I talked to you from Tuesday afternoon through about Friday morning, I probably do not remember it. But thanks. I hope that in my drug-induced haze, I didn't say anything bizarre or insulting. -Joe 8/13/99: A TIME OF HEALING FOR THE ALLIANCE 6:10 PM Tom here. Jenn has prompted me to make this report: Joe has walked six times since the surgery, and as of today begins eating (clear liquids only, but previously he wasn't even allowed water or ice chips). Joe also reports that he is now officially feeling better than he did before the surgery. That is what I would personally call the "Magic Point", the event horizon, the point where the pain of the surgery and the healing is less than the pain of the disease that has been cured! Joe has personally asked me to gather guests! Please email me immediately at [OLD E-MAIL ADDRESS EDITED OUT] if you're interested in paying Joe a visit. He is feeling much better and is ready for guests. He'll probably get out on Monday, so this weekend is the perfect time to drop by! -Tom 8/10/99: THE DEATH STAR err COLON IS NO MORE!!! 3:10 PM Hi, this is Tom (Joe's younger brother) reporting in to inform the rest of the rebel alliance that the evil Death Colon has been destroyed! I have just returned from the hospital. Joe's surgeon has informed us of very happy news -- it appears that only the colon was infected with the Dark Side. The small intestine and the liver appeared to be in the clear. This is indicative of ulcerative colitis -- which is now cured, since Joe's colon has been removed!! We all saw Joe after the surgery, once he was moved from recovery to his room in the Dunn building. Joe's color was pretty good and he was even cracking a couple (semi-incoherent) jokes. Joe is now on the road to recovery! I will be returning to the hospital tonight to check back with him and perhaps provide contact info here. In the meantime, you can email me at [OLD E-MAIL ADDRESS EDITED OUT] with any messages for Joe. I will print them out and deliver them. Note for clarity's sake: I've gotten a couple emails asking whether Joe is now done w/ surgery. He is not. He will have another procedure in 3 months or so. That procedure is detailed on this website. Thank you. -Tom 8/10/99: THE CLIMACTIC BATTLE SCENE It's 4:00AM, I'm up and getting ready to go to the hospital. Last night, I had a fistful of antibiotics to take -- this is not an exaggeration: 12 pills total in a 4 hour period. I guess these are supposed to kill off any bugs that you might have in your digestive tract. All I know is, they made me extremely nauseated. At this point I feel like I should give a shout-out to my fiance and best friend, Jennifer, who has been so supportive and understanding throughout all this. She has been so wonderful -- I love her so much. Anyway, I better get going. Lots of stuff will be done to me today! It may be a few days until the next update. I will try! -Joe 8/9/99: THE DAY APPROACHES Here it comes... I guess I'm not going to get out of this after all! Last night at 6pm, I drank a bottle of magnesium citrate, as directed by my surgeon. This stuff is supposed to "clean you out" and get you ready for the surgery. The results were so unpleasant that I will not be referring to this episode at any other point in this narrative, other than to compare it to, perhaps, some kind of medieval cure. It was as if I woke up in the 15th century, and my doctor thought my illness was caused by an imbalance of bodily humours, and had administered this bottle of purgative as a treatment. So now I've just got to wait until tomorrow. I'll be showing up at the hospital at 5:30 AM. Then there's nothing left for me to do but lie down and let them cut me, gut me, root around inside me for awhile, then staple me back up. Pretty simple! -Joe 8/7/99: On Thursday (8/5) I went to Methodist hospital to meet with my enterostomal therapist nurse, and to get all the pre-operation stuff (bloodwork, x-rays, etc) done. Since I was feeling poorly, my dad was kind enough to drive me there, and wait around in the waiting room for hours and hours. Thanks Dad! Anyway, the ET nurse showed me the appliance that I will be attaching to my body, and how it will work. My thoughts were: it was far sturdier than I thought it would be. I had only seen photos and drawings of ileostomy wafers before, and they always looked really flimsy. They are TOUGH! Made of thick, rubbery plastic-like compound, backed with a gauzy material. Seeing the wafer was great, because one of my only worries was that this thing would always be slipping off of me, or tearing. I am no longer afraid of that! She also measured and marked me for the placement of the stoma. She basically looked at how my body is constructed and tried to find a good place for the stoma. The bad news is, on my body, there is really not a good place for one. I wear my pants very low (not quite gangsta-style, but almost) and I've kind of got some mild "spare-tire" love handles, made worse by years of taking prednisone. This means that just about any place on my abdomen is a bad one for a stoma. She marked the place for the stoma by scratching my skin with a needle. She said it wouldn't hurt. It HURT!!!! It was more like she carved an "x" on my abdomen using a needle. I don't know how I'm going to handle the stoma placement. I can either wear my pants higher than normal (and I mean MUCH HIGHER than normal -- we're talking Ed Grimley, that guy from Saturday Night Live) or I can wear them loose. I think I'm going to opt for loose. I also got to talk to an anesthesiologist. I told him I was going to be very nervous before the surgery, and I basically wanted them to start giving me sedatives as soon as they could. Because that's the part I dread the most. Not the recovery, not the actual surgery, but the hour or so before the actual operation, where I'll just be lying on this stretcher, letting my imagination run wild. And they wheel me into the operating room, and I'm scared out of my mind. I know myself well enough to know that I have the ability to turn that into a very unpleasant situation. So the anesthesiologist promised that I would be given liberal amounts of sedatives, and even wrote on my chart in big red letters, "ADMINISTER VERSED [a really good kind of sedative] ASAP." I've taken Versed before. It was a good experience. I am no longer worried. PS. This operation cannot come too soon for me. I have been feeling terrible recently, and it just seems to get worse and worse every day. I want this colon OUT OF HERE! -Joe 7/30/99: Thanks everyone who has visited so far, and offered kind words of support and encouragement. I'm pretty sure I'm actually going to make it all the way to the date of the surgery without getting in my car and fleeing to Bolivia or something like that! Actually, every time I start to lose my nerve and have second thoughts, my colitis acts up again, as if to remind me why I'm having this done in the first place. It has really been interrupting my sleep recently, so I have a bizarre schedule -- I sleep during much of the day, and am up almost all night. A few nights ago, I felt so crummy (cramping, fever, the runs, etc) that I was tempted to perform the surgery on myself using a rusty breadknife, a turkey baster, and a spork from Kentucky Fried Chicken. I got a phone call from a very friendly enterostomal therapy (ET) nurse that will be working with me. An ET nurse is specially trained in all the aspects of adjusting to, dealing with and caring for an ostomy. Since I will have a temporary ileostomy, I will be meeting her next Thursday. I'm going to be measured for the stoma -- she'll look at how my body is constructed, how I stand and sit, and where my beltline falls -- so that it won't interfere too much with my movements. I have to admit it is a really freaky idea that I'm going to be having an extra hole where I didn't have one before. By the way: by special request of Steve Banks, there will soon be a new line of Colon Wars Action Figures! -Joe 7/27/99: The surgery has been scheduled!!! August 10th, 1999... I'll be going in at 5:30 AM for the BIG FUN! I know there's not much to this site right now... I'm trying to keep it fairly simple. I'll be adding a "mission briefing" section to this site when I have the energy to do it... just briefly, the story of my problems with colitis and why I finally decided to have surgery. -Joe 7/22/99: This site has been born! I figured I would need a cool way to keep friends and family informed of my progress. Stay tuned for actual information! -Joe |