I’ve moved this blog to blogspot as it allows me to do more with the blog and be a bit more creative.
The new address is:
I went to the doctor today. I had been concerned because the original blood clot/open wound at the base of my incision had led to the formation of a second one and seemingly healed scar tissue to come undone. When you hear the words “I’m not quite sure why this is happening” you’re never really filled with a sense of security. I expressed concern over the fact that it seemed to me that the scar tissue may give way further and come even more undone. For that I got, “It very well may.” Also not very reassuring. I was given some antibiotics and told there is still nothing to worry about.
Now I’m supposed to return to work next week. I expressed my concerns and the doctor informed me that he did not want me to return to a full work day for the first week or so. My larger concern is that I have been out 6 weeks already with this surgery, 3 weeks going back to last November for treatments and illness, and at least another 3 weeks coming up with the reversal or takedown surgery. If you do the math if I miss no more time than already alloted I will have exhausted my FMLA protection and I really want to keep my job, particularly with a kid on the way. To top off my FMLA and STD worries, I just found that my team at work was reorganized today and I will be reporting to a brand new manager.
Tomorrow will be 4 weeks since my surgery and still I’m in pain and popping vicodin periodically. The good news is the large blood clot in my groin seems to be improving slowly. The bad news is that the pain and inflammation does not seem to be dissipating with it. If I sit upright for too long or am on my feet for too long it causes frequent and sharp shooting pains around my nether regions. Needless to say my condition continues to hinder my mobility. I’m of course concerned because it appears that these lingering after effects from the surgery are lingering longer for me than most, at least based on feedback from others that have had the same surgery. Perhaps this is the difference between minimally invasive versus open surgery? Unfortunately there wasn’t anyone here locally or even at Duke University Medical that performed the surgery laproscopically.
Additionally concerns with my recovery include the frequency with which I’m emptying my bag. When I’m up and about it doesn’t seem I can go longer than 30 minutes to an hour without needed to empty my ostomy bag. In talking to others I found that some take imodium to limit their output, something my surgeon acknowledged I could do but seemed concerned and reluctant. I include many of the stool thickening foods in my diet such as yogurt, cheese, oatmeal, etc. but this does not seem to slow things down at all. How will I manage this when I go back to work, not to mention the bulge in the pants? Don’t even get me started on clothes. I dropped $30 bucks per pair of shorts at Dicks sporting goods for some Northface cargo shorts with an elastic waistband as my drawstring shorts and belts seem to apply too much pressure to my ostomy bag. Anything that constricts the flow to the ostomy bag seems like an accident waiting to happen.
In summarizing, I’m not quite where I want to be yet and not certain how and when I’ll get there. Maybe I worry to much? Maybe by the time I’m schedule to go back to work all these issues will have resolved themselves? For now I’ll continue to tackle the issues one at a time.
Posted February 2, 2009
MONDAY, Feb 2 (HealthDay News) — Two immune system proteins may someday help doctors treat and prevent colitis-associated cancer (CAC), a new study suggests.
The Interleukin 6 (IL-6) cytokine, a protein released by cells in the immune system, plays a key role in tumor production of colitis-associated cancer, according to a study on mice done at the University of California, San Diego, School of Medicine. This work by IL-6 appears dependent on STAT3, a transcription factor that encourages cancer development, according to the findings published in the Feb. 3 online edition of Cancer Cell.
The findings suggest that targeting IL-6 and Stat3 mught be a way to stop or treat CAC, said lead researcher Michael Karin, a professor of pharmacology and pathology at the university and a member of its cancer center. For example, when researchers removed STAT3 from intestinal epithelial cells, the development of colitis-associated cancer stopped in the mice.
Inflammatory bowel disease, such as ulcerative colitis, puts people at a greater risk of developing colorectal cancer. Nearly half of people with the malignancy die from it.
The new study backs previous work by the San Diego researchers, who suspected that IL-6 helped foster chronic inflammation and the survival of malignant cells that helped promote cancer.
The article can be found at: http://health.usnews.com/articles/health/healthday/2009/02/02/new-clues-to-stopping-colitis-linked-cancer.html
I wanted to share with other ostomates the key to reducing odor and extending the life of my ostomy bag. I’ve begun using a small water bottle that can be found out any running store, generally used for hydration. After emptying my bag I squirt water into my bag and allow it to flush the bag out. I refer to it as my ostomy bidet. I use less toilet paper doing this, have a cleaner bag which reduces odor, and extend the life of my bag. The bottle is small enough to through in a small bag or even a large pocket and take with you to work or when traveling. I believe other “professional” ostomates have realized the same thing but wanted to share this with others that may have not.
my ostomy bidet
Today I was a little creative with my free time and created a logo for my fantasy football team this year. With the help of those on the j-pouch.org site, “The Semi Colons” was chosen for my team name. So here it is. 
my new pouch
I guess I’m doing better than most in that I’ve found a way to get my bag to last four days while still taking showers. The answer…waterproof medical tape. I got the skin colored tape to blend with the bag. Still just three weeks post surgery, changing the bag is an ordeal. I’ve changed it 4 times already completely on my own. I followed Anna, the ostomy nurses advice and change it in the morning when my output is at its low point. Today was a bit more troublesome than the past couple of times as excrement continued to ooze out of my stoma while changing. I was able to wipe it up and go about my merry way.
I do love my new bags, well as much as anyone can love an ostomy bag. Upon being discharged with the help of my ostomy nurse I ordered the hollister “new image lock n roll drainable pouches with integrated filter”. Its great because unlike the ostomy bags provided in the hospital with the transparent front, I no longer have to see my own shit and neither does anyone else. The bag also has a carbon filter to filter odor and gas and prevent the bag from filling with gas. I went a step further last night and ordered a pouch cover through c and m ostomy supplies.
In a previous post I discussed expectations. Well I was under the impression that I’d be using less toilet paper with an ileostomy than I did when suffering from UC, boy was I wrong. The advantage now is I can buy the cheap recycled sand paper stuff since its cleaning my bag and not being used to wipe more delicate areas.
I just got back from the doctor today, my second visit since being discharged from the hospital. My surgeon tells me that the issues I’m coping with are normal for a surgery of this magnitude. I can’t help but think that not only were my expectations with regard to the surgery were way off base but the pace of the recovery as well. As I mentioned in my previous post I had no idea of the amount of pain I would be in for with the surgery. I typically have a fairly high pain tolerance and generally avoid pain medicines unless absolutely necessary. The day of the surgery was a giant blur. Certain things I do remember distinctly, the amount of pain I was in for one. As I was coming to and being rolled into the recovery room I remember writhing in pain groaning “ouch” and “ow” while being told by the nurses to be quiet because others were in the room with me. It wasn’t until I was moved into my room and the morhpine drip begun that I was subdued by a narcotic induced slumber.
The next day I awoke to the reality that I had a bag attached to my stomach and a complete lack of mobility. The lack of mobility during the initial stages of recovery and feeling like an invalid was almost as difficulty to cope with emotionally as the reality that I would now be pooping into a bag attached to the outside of my body. I required assistance for most of my hospital stay in emptying my ostomy bag because of my lack of mobility and need to measure my output. This task was one that I got the impression the nurses and techs there were exceptionally reluctant to perform. As I began to regain some mobility I attempted to empty my ostomy bag on my own. However, attempting to empty the bag while pulling the hospital gown up high enough and juggling the measuring container is quite a feat. A feat that I failed at miserably on one occasion as the container fell out of my hand, the bag came off, and shit flew everywhere. It was one of many emotionally trying experiences for me.
I went into the surgery planning on a 5 day stay. By the time I was discharged I had been in the hospital 8 days and had dropped 15 pounds. Three to four days were spent on just ice chips. A liquid diet was introduced by the evening of the second day following surgery. I was quickly transitioned to a full liquid and then low residue diet. I have reservations as to how closely the dietary staff followed those instructions or whether they even considered what I should be eating concerning my surgery and had to make several calls to the dietitian during my stay. I was told that I should be asked each day what I wanted, though that happened only twice during my eight days at the hospital. My surgery was on a Tuesday and the plan was to discharge my on Saturday. By Friday I had been feeling better and taken off the IV and morphine, though I continued to receive almost hourly heparin shots until being discharged. I certainly felt I was making progress yet I still had reservations about going home so soon after surgery. Late Saturday morning it became apparent that my reservations were well founded. I began writhing in a pain comparable to that, which I experienced immediately following the surgery. The pain came in waves followed by nausea and vomiting. The act of vomiting seemed tore at my staples and bloodied the gown. The cycle continued three times by the time I was provided anti-nausea medication and reconnected to the IV and morphine. I was scared thinking it might be a blockage and require more surgery. Fortunately, as it turns out it was just a matter of food being reintroduced to quickly and my system reacting the way it did. The next couple of days were spent on ice chips before the liquid, full liquid, and low residue diets were re-introduced over a two-day span. I could not help but think at the time that the rapidity at which everything was introduced and my surgeon wanted to get me discharged is a result of the insurance system in this country.
Other things that I was not prepared for in the hospital included waking up in a pool of blood that leaked through my rectum. I was told this was normal and just the result of the stapling of the j-pouch. Black and blue genitalia from catheter was something else that was disturbing. Probably the most disturbing, however was a blood clot and corresponding painful bulge just an inch north of my genitals. Again this was apparently normal but disturbing nonetheless. On the eighth day following my surgery I was discharged. With my wife out of the country and still lacking mobility and stamina, I opted to stay with my in-laws in their one-story home rather than climb three flights of stairs to my apartment. My first night outside the hospital was another scary one as just two hours after falling asleep I awoke in a pool of my own fecal matter. I was told that this two was normal. I then donned depends for the first time and hope its only temporary. Since then I’ve had urges to expel mostly mucous through my rectum and done so. As with everything else this too is normal. Probably the most disturbing and persistent of my post-op experiences is the blood clot just above my genitals. My surgery was open, which means I have one large incision running from just an inch above my genitals to about two inches above my belly button that was stapled together on the surface. The bulge created from the blood clot eventually turned into a fairly grotesque opening. A significant hole (about 3/4 of an inch in length and 1/2 an inch in width) so close to such an important area was certainly alarming to me. The staples in that area were no longer holding flesh together. When I went to get my staples removed several days later I was told that this was nothing to worry about, that the blood clot would go away on its own, and the wound would close on its own as well. The fact that the wound was open was a positive and make it easier to avoid infection. Now three weeks after surgery the clot is still there and I continue to stuff the hole with wet gauze and change the dressing on the wound 2-3 times a day. Still another issue that I had to cope with was a bruise that appeared on my left ankle that gradually swelled up like a baseball. While painful there was the larger concern of a blood clot. An ultrasound put the worry to rest but not the pain, which is slowly subsiding.
After a week at my in-laws I felt I had the strength to go back home, where I’m being helped by my brother. At home I’d be more comfortable and the first few days at home went swimmingly. I even was able to get behind the wheel of my car for the first time this past Friday and catch a movie with my brother and niece relatively pain free. By Friday evening however the pain was back. Practically my entire groin area was inflamed and a blood vessel had burst in my testicle creating a very painful bruise. Sitting down and getting up has become painful again and brings me back to my days in the hospital. Saturday night I was running a fever of 100. The temperature subsided though by the morning. It was these turn of the events over the weekend that prompted me go in to see the doctor today. I was reassured that I have nothing to worry about and everything is par for the course. I was reminded that I’m only three weeks post surgery and that the recovery does not happen overnight.
Upon reading about my experiences, one might ask whether its worth it. God knows, I’ve asked myself the question a few times over the past couple of weeks. The answer is yes. I no longer have gut wrenching cramps or have to run to the bathroom or confine myself to the bathroom for hours on end. Once my strength is back I’ll be able to take walks without having to worry about soiling myself or having sleepless nights because I have to get up and go every two seconds. I’ve also eaten some foods that I’ve not had in over 6 years such as a cheeseburger and ice cream, though I don’t plan on making those things staples just because I can. I can now have pasta carbonara without the pain. I virtually removed the colon cancer risk while recognizing other risks. Following the surgery I was informed that my pancreas was a little harder than normal, most likely a result of the UC drugs I no longer have to take such as remicade or abatacept. Most importantly, I’ll be able to lead a normal life with my son after he’s born in November.
Counting down the days to the reversal…..
Surgery pictures can be found at: http://www.flickr.com/photos/paulrlagrange/sets/72157621439700850/
Its been several weeks since my last post, which was pre-surgery. While I’m still not close to feeling 100% I am slowly but surely regaining my strength. I can honestly say that I had no true idea what lay in store for me from a pain and recovery standpoint and no amount of reading and questions can truly prepare you for that. Nonetheless, I am still glad I opted for the surgery while looking forward towards the reversal. I will in the next several days attempt to chronicle my experience in greater detail.
Tomorrow is the day I’ve been waiting for, the chance to finally rid myself of my diseased colon and the symptoms that have plagued me for the past six year. I have and will continue to try and laugh at this all. For the first time I felt nervous about the surgery today. I know I really can’t understand the pain associated with the surgery until I’ve experienced it. I still remain excited about the longterm prospect of a normal life. Since creating this blog, I have met so many wonderful people who have offered support and advice. It is everyone’s supportive words and encouragement that help brighten the light at the end of the tunnel. I also want to thank Mark and Megan, the creators of the J-pouch.net site. It was their chronicles of Mark’s experience that have helped myself and many others make a difficult decision with the promise of a better life. Likewise I hope to take pictures and chronicle my recovery. While in the hospital I’ll be updating the blog through the twitter feeds from my blackberry when possible. Elise in Virginia is going through the same surgery on the same day and we have created our own support group of two since we will be recovering together. Elise, GOOD LUCK!!!!!
I have a couple of hours remaining before the bowel prep begins and soon the first chapter of a new life.
