|
|
||||
|
|
|
|
|
|
|
Continued steady progress.July 17, 2005 8:36am ESTI've continued to make steady progress in the last week and am beginning to feel really good for the first time in years. I've spent a full week at work without trouble, my incision is looking great and I have very little to no pain there most days, and I'm even beginning to look toward the future again and plan things for my personal life and my business. Cool. So where does this leave the future of this site? It doesn't make sense to keep an ongoing "health update" section on the front page, so I'm going to redesign and refocus the site over the coming months. This will give me a chance to do the following:
Stay tuned for the changes. I'm getting well (gasp). Now what?July 8, 2005 8:36pm ESTIt's been almost 10 days since my surgery and I'm doing very well. In fact, I returned to a light work schedule this week and tolerated that without a problem, in addition to the light exercise and normal meals I introduced when I returned from the hospital. It will still take months for me to make a full recovery but I'm well on the way and it looks as if my years-long struggle with Colitis and related intestinal problems are finally over. Which begs the question: now what? Oh, I know that Kate and I are going to be parents after the first of the year (I couldn't forget that!), we're still getting settled in our new apartment, and there's always 3000K to pour energy into. That's not really what I mean. I've defined myself by my illness for so long, and filtered every action and plan through the "what if" machine, that I don't really know how to be well anymore. What is it like to wake up and not wonder if you're going into the hospital that day? To be able to just eat, and not worry about the impact that food may have on your intestines? To live without constantly wondering about an upcoming surgery, or doctor's visit, or medical test? I'm a fundamentally different person than I was three years ago before I became sick. Physically I'm a different person than I was even two weeks ago, with more options and a brighter future. Now I have to learn how to be the new me. The first step is going to be figuring out who that is. Home once again.July 4, 2005 2:45pm ESTAnother surgery is behind me, and I'm home recovering (once again). I'll post more later, but for now just wanted to quickly update everyone on my progress. As always thanks for the overwhelming understanding and support! Bring it on!June 28, 2005 8:25pm ESTSo this is it. I've had my last meal - a delicious open face seafood ravioli at The Sole Proprietor. I've started a clear liquids diet until the surgery. I've ingested the magnesium citrate (colon cleaner) to prep for the operation. I'm all set and looking forward to tomorrow and the ensuing recovery. This should be it and the beginning of my life after Colitis and Colostomy. Damn am I ready to start life again. See you on the other side. Cleared for surgery. T minus four days to operation.June 25, 2005 12:03am ESTI met with the surgery team and a variety of specialists at Boston Medical Center on Friday for pre-operation stuff. What kind of stuff? Questions about my medical history, testing, someone else asking the same medical history questions, more testing, more medical history questions, testing, one long wait, and then more testing integrated with medical history questions. It's frustrating that each test starts with the same set of background questions (don't they have a central database with this info by now?), but I am glad they are thorough. And just for reference, no I'm not allergic to latex or penicillin. :) I am tested and questioned out. But that's what it takes to be cleared for surgery. Now everything is all set for next Wednesday, June 29th, when I'll have the colostomy bag removed and the ileostomy reversed. Prior to that I just need to drink a lot of fluids, stop ingesting anything 24 hours before the surgery, and use some bowel cleaning magnesium citrate to ensure I'm truly emptied out. After this surgery I will be recovering for 3-7 days in the hospital, depending on how quickly I bounce back, and then I should be able to return to a light life schedule after arriving home. I will have a new abdominal incision to watch and be careful of, and will continue on the low-residue, low-fiber diet I've followed for the past 2 months. This is it for the surgeries, though. Yea! One more week - the anxiety begins.June 23, 2005 3:47am ESTIn just under a week I will have my follow-up surgery to reverse the ostomy and reconnect my intestines to the rest of my bowels. After this surgery I will be free of Colitis (as I have no more colon) and should be able to put all of these intestinal problems behind me. Only I'm concerned that it won't be that simple. I've been having intestinal obstructions on and off for almost a year now, some partial, some complete. So far the x-rays, ct scans and other tests have shown that, yes, I've been obstructed... but they can't pinpoint the cause. The best guess at this point is that I have an adhesion or scar tissue in my small intestine as a result of one of my past surgeries. And that's the cause of my anxiety - what if this surgery doesn't get rid of the cause of the obstructions and I continue to have problems? I don't think this is an unreasonable fear. I've had two obstructions since my surgery on May 11th, and I had three this year before that. They come on suddenly and without warning and are caused by factors I don't have control over. They are excruciatingly painful and result in emergency hospital stays of undetermined lengths. And recently they've been coming on with increasing frequency. These thoughts make me feel a little guilty. After all, I'm working with one of the best specialists in the country for my problems, I won't have Colitis anymore, and I'm lucky in the first place to have a disease that does have treatment and cure options. In many ways I'm blessed. But I've been sick for years and I really want to put all of this behind me and return completely to my healthy life. Let's hope next week's surgery really will be the end. Out... again!June 20, 2005 10:25am ESTI'm back home from my recent hospital stay. I actually feel fairly strong and well, thankfully this time I wasn't in for too long and didn't have a chance to become very weakened. I'll still need a few days to rebuild before I'm back to my current state of normal. And, of course, I need to build up before my next surgery on June 29th... Being transferred to another floor...June 18, 2005 6:33pm ESTMy partial intestinal obstruction is improving, but I'm still not out of the woods so they are transferring me to a different floor (where they keep the patients with intestinal problems). I will probably not be able to find another open hotspot, so I expect this will be my last post for a while. For the latest news and information please call Kate. I'll post again as soon as I'm out. At this point there are a couple possible courses of action:
There are a few possible causes for the intestinal obstruction, including an adhesion or scar tissue on my small intestine from previous surgeries, a twist or kink in my intestines from the way they resettled after surgery, Crohn's disease, or something else. The doctors are running a variety of tests to try and figure out the cause before deciding on the best course of action to take. More Information: Another hospital readmission.June 17, 2005 2:11pm ESTEric has been readmitted to the Boston Medical Center with a partial intestinal obstruction. More information as he is diagnosed and treated. Back in - and out - of the hospital.June 15, 2005 8:24am ESTHi, friends. Just a quick note to let you know why I've been so silent lately and what's going on. I was re-admitted to the hospital on June 1st with some abdominal problems (a post-surgery and inflammation related obstruction). Wow was it painful! It's cleared up now and I'm back home resting and once again perfecting the practice of easing back into life. My doctors think that I should be fine until the next surgery, but if you don't hear from me for a while I may be dealing with additional complications. As for my next surgery: it is scheduled for the morning of June 29th. For about a week after that I'll be out of touch, too, as I recover in the hospital and then return home to let my abdomen heal. I'll post more interesting information later. For now, be happy with the health news! Incredible new "intestinal bug" technology.May 31, 2005 8:58pm ESTThere's an article titled "Robot combined with swallowable camera could give docs a better look inside the small intestine" at the Pittsburgh Post-Gazette online today. It discusses a new micro-robot that can be swallowed and then used to take pictures and biopsies of the small intestine. Not only is this just cool technology, this is the kind of medical advancement that's really going to help change the lives of people with chronic intestinal illnesses. Instead of having a sigmoidoscopy or colonoscopy to check on ones intestines, this robot could be used instead, and give better results because endoscopes typically can't see far up into the small intestine. And the uses go far beyond just helping those with Crohn's Disease - it can also be used for individuals suffering from certain types of cancer and (hopefully) for general screening. I'm always happy to see new technologies developed that are really intended to improve people's lives. Kudos to Metin Sitti and his team at Carnegie Mellon University. More Information:
Bring on the complications. Sigh.May 29, 2005 1:27pm ESTI've been a little silent online the past few days due to some complications with my stoma (more information on stomas and stoma care). Specifically, my stoma is recessed slightly into my skin so it's hard to get a good seal for the colostomy bag and appliance. This is allowing stomach acids and discharge to get against my skin in a ring around the stoma, which causes a lot of irritation and some bleeding. I'm working to manage the pain - so far it hasn't been too severe, and I've been able to work through it or use some mild painkillers. I have continued to maintain my activity level and diet, so I'm not regressing in terms of my recovery, but this is a setback and it's making life a little more difficult. Thankfully I only need to work with it for another six weeks or so until the reversal surgery. :) Embracing creativity. Living a good life.May 24, 2005 11:55pm ESTHow's your life? (Be honest.) Why the hell didn't you say "Great!"? I keep thinking about value, and meaning, and what makes a good life. Not necessarily a good life in the sense that someone else would define it as pure, or purposeful, or following some set of socially defined moral guidelines. I mean a good life in that I'm happy and that what I do has value and meaning for me. Maybe along the way I'll make a difference to other people, too, but living for someone else can't be your primary goal or you're not really living, you're acting out a script. Lately I've been reading quite a lot, to help pass the time as I recover from surgery in a more fruitful way than watching marginally acceptable TV shows. And I want to share a really cool manifesto I read on being creative. I think it's worth reading, if you can spare 30-45 minutes, and isn't really a "how to" so much as a "wake up and think about your life in these terms for a bit" manifesto. How To Be Creative, a manifesto published at Change This. It's free. And good. Enjoy. It will be interesting to see how my definition of a good life changes once I'm a father. Stay tuned. Easing Back to LifeMay 23, 2005 10:14am ESTI'm pleased to report that my recovery continues at a great pace. I've been walking around outside quite a bit, eating plenty of varied foods (but sticking to a low fiber, low residue diet) and helping out a bit around the house, all without problems or pain. So at this point I feel comfortable easing back into life, and will start working a light schedule from home, as tolerated. If you try to email or call me and don't hear back right away, however, please be patient. Although my recovery is progressing nicely I'm still going to take breaks and rest when I need to, and that means shutting off my PowerBook (gasp!) and turning the ringer off on my phone. You all knew I couldn't stay away for long. :) Surgery WrapupMay 20, 2005 3:05pm ESTI've been home for almost a full day now, and it's great to be recovering here. I'm still a little weak and tired, but in general am recovering much faster than I expected. I have very little pain and feel quite good - I've even been outside for a walk today, which was nice, since I've been indoors for the last ten. My surgery went well, but was more difficult than originally anticipated. I was admitted to the Boston Medical Center a day early with another partial intestinal block, but the team decided to go ahead with surgery instead of postponing it again - there was no reason to postpone and the block didn't cause any of the additional difficulties. Difficulties arose because of my past two years of active Ulcerative Colitis and previous surgery, but Dr. Becker and his team responded well and didn't have any trouble. It just took them more time than expected to operate. My recovery started slow as my body adjusted to the new layout of my abdomen and the incision started to heal, but once I was able to start walking around I began recovering more quickly and feeling significantly better and stronger. Walking is really good exercise, especially when you're recovering from surgery, and I intend to keep up with a steady schedule while I rebuild my strength and return to health. So there you are - I'm at home, walking around a bit but generally still resting and focusing on easing back into things, eating real food, and very happy to be getting well again. Home recovering!May 19, 2005 10:35pm ESTHey, everyone. Just a quick update to let you know that I'm home recovering now. I was released from the hospital late this afternoon. I'll write more later, but for now, I want you all to know that my recovery is going very well, I have only a little pain that is managed quite well, and am generally feeling great. And it's wonderful to be home. The anxiety begins...May 7, 2005 12:28am ESTThere are just a few more days left until I have surgery. I'm beginning to feel a bit anxious about this. I know from past experience there are parts of the recovery which will be very uncomfortable - having a catheter, the tube down my throat to keep my stomach cleaned, the sameness of the room and routine day after day - and I'm starting to focus on those things. I need to keep my eye on the ball, the intent of this is to help me return to health. A few weeks of discomfort and pain to finally recover from years of ongoing problems (and possibly years into the future, without help now), well now, a few weeks isn't such a big deal. Can't Seem to SleepApril 26, 2005 2:43am ESTSince being released from the hospital on Friday I've been plagued with restlessness and insomnia. I know part of it stems from the high dose of steroids I'm on again leading up to the operation - Prednisone does a great short-term job of keeping ulcerative colitis at bay by reducing inflammation - but it has to be more than the drugs. I just feel as if there is so much to do in the next couple of weeks, and I keep waking up after just a few minutes rest, ready to head back into it. I know this is the worst possible thing if I'm trying to rebuild my body's strength prior to surgery - instead of helping I'm hurting. But I just don't know what to do so I can relax and rest. Any thoughts would be appreciated. I Am OvercomeApril 25, 2005 9:11pm ESTI've been trying to write a post, a thank you, an expression, some thing that would be able to capture just how tremendous all the support, prayers, and understanding I've received in just the past few days have been. But I can't. Not without sounding saccharine, or phony, or just cheesy and lame. Under it all there's a very solid truth, though, my core is swelled with the greatness of others, and it makes it all so much easier to cope. I am not incredible. I am not strong. I am not even unusual. I'm loved, and that's way more than I could ever hope for, and will get me through whatever may lie ahead. Details on my Upcoming SurgeryApril 24, 2005 6:30pm ESTAs you've probably heard by now, I've been in the hospital for the past two weeks with severe intestinal problems. Specifically I suffered from a complete intestinal blockage due to inflammation of my small intestine near the spot of my previous surgery. This was exacerbated by ongoing problems with Ulcerative Colitis, lots of ongoing medications, and a possible bacterial infection. Initially my doctors thought I would need emergency surgery, so I was transferred from hospital to hospital until I ended up at the Boston Medical Center. Rest and aggressive medical therapy was able to relieve the blockage. As a result the surgery has been delayed to give my body a chance to rebuild some strength and to schedule the operation for a more convenient time. My surgery is scheduled for May 11th at 7:30 am. This is a major operation, during which I will have the remainder of my colon removed to get rid of the Ulcerative Colitis permanently, a “J-Pouch” constructed for eventual return to normal bowel functionality, and a temporary colostomy bag installed while my insides heal. It will be about a 5-hour procedure followed by 7-10 days of hospital recovery and then a gentle schedule of home rest and recovery. Two months after the initial surgery I will return for a smaller procedure to remove the colostomy bag, which will again be followed by a few days of hospital recovery and then - finally - a gradual return to normalcy. In the time between the two surgeries and initially following the final procedure I'll be working closely with my doctors to monitor and and evaluate the healing and recovery process. I'm very optimistic about this turn of events. I was able to avoid emergency surgery and have a bit of time to prepare physically and emotionally for the operations and recovery. I'm also working with top specialists in this field, a team lead by Dr. Becker, so after three or four months I should finally get back to being healthy. It's been a very long two years and I'm excited to be solving these health problems. Thanks for your understanding, support, prayers, and generally being great while I've dealt with these health problems. I know it's hard because we don't like to see our friends or loved ones in pain, but with a disease like mine there is very little anyone else can do. Now this is finally coming to closure and I'll be able to resume my life - yea! :) -- |
|