Wednesday, May 8, 2013
With my last update I had started back running when I was set back by an achilles tendonitis injury. So with practically no training I was able to complete the Cooper River Bridge Run 10K in April at what they tell me is a respectable 9 minute mile pace. Still a tough pill to swallow when I was used to running at a 6 minute mile pace. Age and life I guess runs just a bit faster and catches up with us all. Things haven't gotten much easier, I confirmed in February that I have yet another parastomal hernia, a possibility my surgeon refused to entertain after the surgery when I knew something was wrong. I kept getting "Do you know how much mesh we put inside of you". Not much a relief when the swelling and discomfort is back. For the most part I have been able to battle through it. As a single father during the week maintaing and exercise regimen, which necessitates waking up at 4 in the morning I tend to pass out at my Toddler's bedside each evening before transitioning myself to my bed. A few weeks ago life with an ostomy took a new twist when on a Friday evening blood started pouring out of the inside of my stoma. I knew it wasn't a knick and there was quite a bit of blood, so much so that two bags were filled with it. A glass of scotch later and it had subsided. Nonetheless I was quite alarmed and called the surgeon first thing the next Monday. They shrugged it off as a once off pointing to the fact that the intestine is something quite vascular and will bleed from time to time. I did the same...until last Tuesday when at work I started bleeding again. With the next call to my surgeon I was advised to contact my GI and get scoped. My first ileoscopy was this morning, which I insisted upon being sedated for. When I woke to some signifcant abdominal pain I was informed that they found an ulcer on my ileum about 20 centimeters in. The first few thoughts of course were Crohn's, which I'm going to try and resist confirming until the results of the biopsy are in. But then I thought I went to the Cleveland Clinic, a world leader to try and determine whether I had Crohn's before going to a permanent ostomy and was told I did not, now yet another ulcer. I still have to get this hernia and prolapse fixed again so maybe I can spare 20 more centimeters of small intestine and they can remove the ulcer while they are at it. More to come...
Thursday, January 24, 2013
The last time I wrote was over a month ago. At that time I had been dealing with some pain along my incision line, which had just subsided but was still in some discomfort. I also was dealing with a wound that would not close and unrelated to the hernia repair an infected cyst on my back. Yet I was ready to return back to work. That was now over a month ago. I've taken things a bit easier this time around and haven't rushed into the P90X workouts or run 3 miles after having a wound vac removed. I have started walking several miles quite briskly on my treadmill at the steepest incline to get a good workout in without moving things to much. I've also started off with some modified push-up so as to take it easy on my mid-section. I'm waiting for a green light from Dr. Mantyh when I see him on February 5th to pick up my exercise regimen and discuss what limitations if any that I might have. Generally I am satisfied with the outcome. I no longer have the level of discomfort when eating that I had prior to the surgery. Nor do I have the extreme swelling either. There is still a little unevenness and swelling around my stoma from time to time, generally after a meal but I guess after 4 surgeries over the past 3 years I can't be too particular. My midline incision scar from the prior surgeries was tidied up, which pleased me. However there is still a small cavity in the same area where it was previously discovered that I had a diastasis recti. Dr. Mantyh was quick to dismiss any idea of a recurring hernia so early after surgery given all the mesh they inserted in my abdomen. The immediate improvement I saw in ostomy output disappeared a week after surgery, which I mentioned previously and has never really returned. I'd say I probably go to the bathroom at least 12 times or more a day to empty my bag, which certainly isn't ideal but the goal was to be pain and drug free and that I feel I have finally accomplished. My mother-in-law has gone home and while I appreciated her help its nice for everyone to get back into their routine. She was a great help and helped out even further when I had to leave for a business conference in Orlando last week as she stayed with her grandson for the week. Traveling with the ostomy is always an adventure. I had my emergency kit in my cary-on searched. I was also asked at security about my stealth belt, which showed up on the x-ray machine and had my appliance checked for explosives. The good news for me is that with my wife's platinum status I was able to get upgraded to first glass going and coming, which meant easy access to the first class bathroom on the plan and free scotch. Over the holidays I decided to give scotch another try, understanding that it is an acquired taste. What do you know after 39 years I acquired the taste. A glass of scotch and a cigar on the weekend has turned into a real treat. Without the ostomy I would have never been able to enjoy the occasional glass of scotch. I'm getting back into the swing of things at work and hope to really perform at a top level this year at my job if I can stay out of the hospital. To my surprise I had a very favorable review for the year despite missing nearly a third of the year due to multiple surgeries. There are plenty of thoughts and musings about life with an ostomy that I have had over the past month and a half that I have been meaning to share but haven't. I must admit to often being too busy or having too much going on. I hope to do better as the year progresses and this post is a step in that direction.
Tuesday, December 4, 2012
As the year comes to a close and I look back I realize its been quite a year. Unfortunately I spent over a third of it at home recovering from surgeries. Hopefully the upcoming year will keep me out of hospitals for a while. I realize its been some weeks since my first post surgical post. A lot of that had to do early in the recovery with me not really wanting to sit up right at a computer for the added pressure it put on my abdomen. My excuse for lack of contributions the last couple of weeks was simply laziness. I appear to be on the mend and ready to return to work next Monday. Just like all my other surgeries I ran into a problem with the my incision opening up again. I was particularly concerned about infection as I haven't been able to get through a surgery without one ... until now. I did have a scare a week ago as I had a rather intense pain at the top of my incision, which felt like a sharp shooting pain that was rather warm to the touch accompanied by nausea. The pain was rather constant for about 4 days before slowly subsiding. Naturally I wanted to make sure nothing was wrong and scheduled an appointment with my surgeon immediately after the Thanksgiving holiday. Unfortunately or fortunately by the time I got in to see him the pain had let up. I likened the scenario much to a car that is making a weird sound but then seems to be running fine once you get it into the mechanic. That same pain still comes and goes. My surgeon reminded me of the extent of the surgery and the layers of mesh covering my entire abdomen as well as the fact the sutures sewn into my muscles are slow dissolving and can take 6-8 months to dissolve. That of course explains the general soreness that still persists. I did express concern in my first post surgical post and to my surgeon on my follow up about the fact that my output, which seemingly normalized after surgery had increased in frequency while becoming more liquid. I also expressed concern over the abdominal swelling, which I still experience after eating, nearly 2 months after surgery. I was told I needed to allow my body time to heal and that some swelling is still normal. Still my overall condition has improved and its not nearly as unbearable as it was before and I am able to eat more often, though I try to keep meals small. I had gotten as light as 145 pounds after surgery and up to 155 as of yesterday with room to grow I suppose as I am after all 6 feet tall and still a bit on the lighter side. My next follow up with my surgeon at DUKE is in February so I guess we will see how I'm doing then. Right now I believe that the output and swelling issues I'm still experiencing may be due to adhesions. I read my surgical report and was surprised to learn that 45 minutes of the surgery was spent removing adhesions and its my best guess that after surgery number four the form rather quickly. I still have my mother in law helping out by dropping off and picking up my son from daycare as heavy lifting is still forbidden. The plan is to have her here until the end of January at which point I hope to be back on my own. One last little note. It doesn't seem like I'm able to escape doctors and knives even while recovering from one surgery. This time last year it was a knife through the thumb that severed a tendon. Now I have a lipoma or cyst on my back with has grown and become quite painful. I visited urgent care yesterday morning in the hope of having it removed while still out of work but was given a round of antibiotics in the hope it would clear it up first. Friday I meet with a local surgeon to discuss removal of the mast and hope there is nothing more I have to worry about. Fun Stuff! I'm looking forward to getting back to work and into the swing of things next week. I'll hold out hope as well that things will get better in 2013.
Friday, November 2, 2012
Tuesday, October 16, 2012
Abdominal Reconstruction is just two days away and I realize its been nearly a month since my last blog post. I've really just been too busy and too fatigued as of late. I hinted in my recent posts the discomfort associated with eating when your abdomen has more holes than the Titanic, well when I weighed in for my pre-surgical appointments I weighed in at a new low 152. I may break the 150 mark by the time all is said and done. Clear liquids the day before surgery, maybe an ice chip after surgery, and some broth the day following surgery. Yippee! The fact that I'm look forward to the surgery and the accompanying pain and misery that is recovery from such a surgery to me seems a bit sadistic. However, dealing with the prolapse, parastomal hernia, and diastasis recti hasn't been pleasant either and looking at the possibility of being able to eat a meal without feeling like one of the unlucky crew members in the Ridley Scott Alien movies. While I'm no where near as depressed as I was a couple of months ago, I've had my moments. Four surgeries in three years and a plastic surgeon that asks you how attached you are to your belly button aren't the most uplifting experiences. I know that this is only temporary and I will overcome this hurdle. I remember how painful the previous surgeries were and with the added mesh being used and figuring this surgery will be all the more painful. I did like that Dr. Mantyh and the anesthesia group brought up the epidural option, which means they can block the pain immediately after coming out of surgery and there isn't that period of intense pain until the morphine drip gets hooked up and you have the wherewithal to push the button. I will not however be doing any tough mudders in the future as I had hoped. I met with my surgeons and made the pre-surgical rounds on Tuesday and Wednesday of last week at DUKE. Dr. Erdmann, the plastic surgeon involved with my repair said I should stick to cardio for my exercise regimen but if I felt the need to do some weight work, he would strongly suggest exercises that strain the abdominal muscles. I can rule out a large part of the P90X DVDs now. When I told my wife that cardio was still in the cards, her response was "The doctor was probably referring to normal levels not 15 mile runs" and she's intent on getting clarification on what I can and can not do when fully recovered directly from the surgeon's mouth this weekend. The office visits last week were a long ordeal and totally drained me. Admittedly two hours is not all that far of a drive, particularly for a first rate medical center like DUKE. However, doing so in back to back days, while still playing the role of single dad to my nearly three year old son sapped nearly ounce of energy I had. Tuesday I did not get home until seven in the evening. My 11:15 appointment with Dr. Mantyh was pushed back to nearly 2 o'clock, while my pre-surgical rounds did not end until 4:30. Fortunately, my mother-in-law was available and willing to pick my son up from daycare when I told her I would not be home in time. I really have great in-laws, even though like all parents you're ready for them to leave after a while when you want to do things your way, but after this surgery I won't be able to handle my son on my own, so they are moving in for the foreseeable future to help out. It will be a good exercise for me to practice my buddhism and cease to have opinions and in the very least keep them to myself and be thankful for their help and willingness to give up their time to help out me and their grandson. I'll post more after the surgery in particular, whether there was a parastomal hernia or not. The CT Scan showed a diastasis recti as well as a prolapsed stoma but now parastomal hernia. My symptoms and physical appearance are all indicative of a parastomal hernia. Both Dr. Mantyh and his nurse, Carmen also added that the prolapsed stoma typically does not occur without a hernia. I was told that one difficulty in seeing the parastomal hernia on the CT Scan, may have to do with how skinny I am. Apparently fat provides a nice visible pocket for the hernia, of which I have none. The diastasis recti and prolapse are definite repair jobs but the hernia remains a mystery although we're proceeding as if its their. So I am needless to say just a bit curious.
Monday, September 24, 2012
I wanted to update my previous post. Since getting the results back from my CT Scan last week I've been just a little confused. First of all what does this mean for the surgery I had planned on and why exactly has it gotten to the point that I can barely eat anything without being incredibly uncomfortable? As it turns out I don't quite know how to read English when it comes to reading a doctors interpretation of a CT Scan. Apparently, the prolapsed stoma visible on the CT Scan is indicative of a hernia. In addition to the parastomal hernia I also have diastasis recti of about 6 cm. In short, my abdomen is swiss cheese and full of holes. My upcoming surgery is going to be reconstructive abdominal surgery. Having been through this a few times before I have a feeling that this is going to be more painful than any of the others coming out of it. While I'm looking forward to getting repaired I'm not looking forward to the pain and recovery. That being said the surgery can not come soon enough as I can barely eat without my abdomen swelling up and becoming uncomfortable. As you might imagine, the discomfort and constant hunger have made me very irritable. I think my family is as anxious as I am to get this period behind us and have me repaired. I will add that for so many reasons I am glad I chose DUKE. I was speaking with a retired chief surgeon today, who when I explained what was going on with me and why I made the decision I did, affirmed that I made the right choice. Let's hope so.
Thursday, September 20, 2012
Last night I got the results from last weeks CT Scan at DUKE back. It turns out there doesn't appear to be a parastomal hernia after all. The diagnosis was "diastasis recti", which is a separation of the abdominus rectus muscles creating symptoms and a sensation very similar to a hernia. The difference is that the muscle separation isn't a hole as much as it is a separation. Nonetheless it has caused and continues to cause considerable discomfort and my insides push out on my abdominal wall every time I eat. The condition has gotten progressively worse and I'm skipping meals left and right because the discomfort just isn't worth it. I'm losing significant weight as a result. I just hope to get things fixed sooner rather than later. I've had to cut out the weight lifting and strenuous exercise for obvious reasons. Running I'm just now getting close to returning to after my trail running injury but am relegated to walking on the treadmill. The lack of exercise is killing me. I'm just telling myself that once I go through the surgery and give myself enough time to fully recover I will be as good as new. I am certainly glad I chose to go with DUKE for my surgery. Yes, I still feel like a number or lab rat for the Medical Students at DUKE but at I have more confidence that they will what needs to be done and do it well. The hernia specialist here in Charlotte was content to use some CT Scans from the local hospital done in June, which it turns out were done differently and even indicated that he did not really need the CT Scan. At the same time the DUKE surgeon insisted on having a new CT Scan done at DUKE and now that I have the results I'm glad he did. Can you imagine going under and the hernia specialist cutting into you only to find there is no hernia. Dr. Henniford came across as such a schmuck on so many levels. I put in a call today to DUKE because now my concerns are several. First, whether the surgical team remains the same and our pre-surgery and surgery dates are still a go. Secondly, from what I read about my condition the plastic surgeon plays the most important role in repair, so should I make another appointment to see him prior to surgery so I can ask all my questions, which I did not have when I thought the surgery was going to be done another way. This upcoming surgery is hopefully my last. I'm tired of complications, surgeries, and long recoveries which seem to have been ongoing ever since I decided to surgically rid myself of Ulcerative Colitis. Keep your fingers crossed. I will post more as I learn it. In the meantime I hope my surgeon's office returns my call before the weekend otherwise I just may go crazy wondering what's in store.
Friday, August 31, 2012
Thursday, August 30, 2012
Wednesday, July 25, 2012
I've been particularly down as I've been finding it increasing difficult to remain positive lately. Before I get to far into my rant I want to acknowledge that life while life with an ileostomy adds a layer of difficulty it was still the right choice for me. Whether it was ulcerative colitis or chronic pouchitis I still had frequent trips to the bathroom, less control, more pain, and more drugs. The ileostomy has gotten me off the drugs and rid me of the pain. I had some post-surgical complications and see my surgeon tomorrow about an apparently troublesome hernia, but those issues can be fixed. The hernia has added a little stress, in large part due to a lack of responsiveness from my surgeon and the fact that he or his nurse did not return my calls when looking for answers I had simply had to call the office to schedule an appointment. Most of the stress and complication as of late however, comes with being a single parent to a two and a half year old Monday through Friday. When my wife is home on the weekends I have no limits, however during the week its quite the opposite. I have to be cognizant of the fact that I have an extremely active 2 year old boy. I've tried taking my son to the playground by our house in the evening after school only to have to deal with a tantrum of epic proportions when we have to leave so daddy can go to the bathroom. I've been left at the mall after clothes shopping for his dance recital with my son, a stroller, bags, and then the need to empty my bag (a two handed job) to have my son dart from underneath the stall TWICE. Fortunately nothing happened to him but I got some looks from parents...if they only knew. As a result of these experiences I have limited our trips to when mom is home or help is around, which doesn't seem fair to him and upsets me. Last Tuesday we had a thunderstorm that knocked out power from about 5 in the evening until midnight. Fortunately I had not eaten much that evening and felt I could take him to Chic-Fil-A for a bite to eat and so that he could play on the playground as well. I should note, that his potty training also makes things interesting as any parent surely understands. After he has an accident, two seconds after I ask him if he wants to potty and he responds no, we head to the bathroom to change. My two year old almost always feels he must be picked up. He then wraps his legs around your torso with a death grip and like any two year old can be quite squirmy. It wasn't until I sat back down at our table in the restaurant and he ran off to play that I noticed he had pulled my bag of, nicked my stoma, and that now my shirts was soaked in shit and blood. Fortunately I had a pouch cover on at the time, which I feel took most of the damage. There wasn't much I could do however but to grab a few baby wipes from the diaper bag and clean myself off the best I could. Richie still had to eat and after all there was no power at the house. Needless to say there was some added anxiety over the matter. Just over a week later, this morning I'm taking my son into daycare. After walking into his room I feel a little moisture on my side only to realize that I'm covered in shit. I don't think anyone noticed but I told my son that daddy had to leave and quickly exited stage left with his outstretched hands crying for daddy. The thing I have to keep in mind is that my son will grow up and life will get easier in many ways. I won't have to worry about him getting into something while he's unattended and daddy is in the bathroom. Usually the cartoons he watches are enough to keep him out of trouble when at home. There will be a time when he listens better and is much calmer and I can go to the restroom without worry. Sometime soon hopefully he will cease to feel the need to be picked up thus helping my ostomy bag avoid his legs' death grip around my torso and the potential ramifications. Until that time comes however, life as of late has been particularly stressful and gloomy. I've met lots of ostomates on the internet in forums and on message boards and lots who are parents. I have yet however to meet an ostomate who is a single parent dealing with what I deal with. That's not to say they aren't out there but I sure would love to meet them. Right now I would really like to learn from someone who has tackled many of the same issues and how they dealt with them.