Today Joe and I met with GI surgeon, Mary Otterson. She is well known, well respected doctor with 23 years experience. She teaches at the Medical College of Wisconsin and is a staff surgeon at Froedtert. This was a consult to educate us on the pros and cons of surgery, so we are as informed as possible before having to make a decision about removing the colon (Colectomy - I almost wonder if I should make a glossary for y'all? :))
We met for over an hour - never feeling rushed. It was overwhelming to have so much information spewed out at once, desperately trying to retain it all, knowing that most of the details will be lost. The take home message is that this is serious business with risks involved. A total Colectomy for ulcerative colitis (i.e., colorectal cancer may have different surgery recommendations and risks compared to Crohn's disease, and so on) typically results in an Illeostomy and/or an Illeoanal Anastomosis. It is often the patient's choice which one to have.
An illesotomy is what most of you picture - a hole, called a stoma (Greek word meaning 'mouth'), low on the belly that has a bag (or "appliance" per medical jargon) attached to capture bowel movements. This bag is emptied by you, and can be used multiple times. Bags come in all different sizes (none of them are gigantic eyesores) and types of plastic, and are typically purchased in bulk on line. Yes, insurance usually covers x-amount of bags per month. Dr. Otterson said the bag is not detectable beneath clothing, even on her young female clients who may be prone to wearing short, tight mini skirts!
An illeoanal anastomosis is the creation of an internal bag or pouch. This is also referred to as a J-Pouch. The pouch is created by connecting a portion of your small intestine (quick anatomy lesson - your large intestine is called your colon and you can live without it, your small intestine is surrounded by your large intestine, like a picture in a frame, and you cannot live without it) to the anus. Stools collect in the J-Pouch and you expel it from your anus. The catch is you expel a lot more often than a person with a colon, and you can develop pouchitis, which is as bad as the word sounds. Pouchitis is essentially having colitis in the pouch and can lead to physical setbacks.
If you choose to have a J-Pouch (illeoanal anastomosis), which is Joe's preference, the surgery is done in two parts:
PART 1 = Removal of the colon, which can be done laproscopically (through the belly button, sometimes with just an additional small incision beneath the belly button), creation of the pouch, a stoma and a temporary looping of part of the small intestine to the stoma. For 6-8 weeks the outside bag connected to the stoma is used for elimination while the newly created J-pouch heals. An x-ray is taken to insure the pouch has healed, and then you're ready for part 2.
PART 2 = Closure of the stoma.
Each surgery naturally comes with associated surgical risks, most of which give me too large of a headache to think about and type out at this time, but also most of which will never happen for 7-8 out of 10 people. Each surgery requires a hospital stay of up to a week, with an additional month or so off from work (for each surgery). The time off of work is largely related to the need to be near a toilet. The body may take up to 2 years to adjust to it's new system, and in the meantime, there is a learning curve for each individual as well - determining what foods work best for your digestion, which foods might provide the most form to your stools (without a colon, loose watery stool is the norm), what your expelling patterns are (the doc says most people will poop out what they've eaten within 2 hours), how hard you can push yourself physically, etc.
A key issue in life without a colon is staying hydrated - especially if you're athletic. The body isn't able to absorb liquids as effectively, so the frequent sipping of fluids is recommended over guzzling a liter after a long run. And speaking of running, Dr. Otterson noted she has many patients, with either an external or internal pouch, that run marathons and do any number of physical activities! She has performed 600-700 J-Pouch surgeries, and says the average age of her patients is 35. We'd pictured her mainly seeing 80-year old colorectal cancer patients, but she actually sees a ton of teens and young adults with an IBD (inflammatory bowel disease).
So (big sigh), that is the simple explanation of what we may be facing. For now, it feels like too much too soon to think about. We're going to mull over this new knowledge, and then tuck it away, while we focus on willing the current aggressive therapies into resolving Joe's inflammation. We ask that you do the same - visualize healing so a Colectomy isn't needed, or pray, or send us positive vibes, or whatever your schtick is ... it's gotta count for something, right?!
This blog captures the unfolding story of my life - my challenges, my joys, my insights and superfluous musings. Check in whenever you can to see what's happening - maybe you will be referenced, or maybe you'll learn something new. And send me your comments... I love feedback!
Wednesday, June 29, 2011
Friday, June 24, 2011
The Appointment
I last left off with the results of Joe's colonoscopy, stating his biopsy results would return in about 2 weeks, and that he'd regroup with Dr. Naik in mid-July. That time schedule was quickly adjusted, no doubt out of concern for the severity of inflammation witnessed during the colonoscopy. Wednesday, Joe received a call from the GI Clinic (this in itself is remarkable, as most communications with the doctors and support staff occur online through the MyChart email function), telling him his C-diff lab was negative, his biopsies were negative for malignancies, and that Dr. Naik wanted to see him the next afternoon. The urgency of this appointment made us feel certain that the discussion would center around the need for removal of the colon, and we began to brace ourselves for this news... And then the news turned out to be a little better than expected.
Dr. Naik's actual intention for calling Joe in ASAP was to try one last effort to save his colon through an aggressive treatment approach combining the Remicade infusions with the oral immunosuppresant, AZATHIOPRINE (also known as Imuran or Azasan). Before Joe can begin Azathioprine genetic testing must be done to see if his body can utilize this medication, and if so, how quickly it will break down in his system, which will aide the doctors in knowing how much to dose him. The testing is done through blood work, which was completed yesterday, with results pending next week. In the meantime, Joe will be maxed out on Remicade. Instead of having an infusion every 8 weeks, he will have the maximum dosage available every 4 weeks beginning Monday June 27th. The following infusion will be near the end of July, and by mid-August they will take another looksee inside Joe's colon for direction on how to proceed.
Dr. Naik feels we can afford two months worth of time on this aggressive treatment before reassessing the need for a colectomy. He made it clear the goal of treatment is to preserve the colon at any cost, but that removal of the colon is sometimes the best answer. He candidly agrees with Dr. Stein (the doc who conducted the colonoscopy) that a colectomy may be necessary, but offered hope that with this dual therapy, Joe's colon may begin to heal enough to prevent or stave off the need for surgery. However, since surgery may be likely, he would like Joe to meet with the surgeon preemptively to discuss the process further, and to that end,we are scheduled to meet with the GI surgeon on June 29th.
In talking with Dr. Naik we became aware of other tell tale signs of a colitis flare that were occurring in recent weeks. For example, eye infections can be part of a flare. Maybe a month ago, Joe's eyes experienced a sudden painful, irritated redness. He saw his opthamologist and was prescribed antibiotic eye drops, but now we know this was connected to the flare - not an eye infection. Sore joints, especially in the spine or hip area, easily attributed to too much exercise, was another symptom. Dr. Naik also helped us connect the dots as to why they were considering C-diff as an interloper for a flare. Since Joe's flare began within 1-2 weeks of his last infusion, C-diff was a real possibility. For those of you who aren't familiar with C-diff, this is a nasty infection, typically found in hospital settings, which can be deadly. It's symptoms are similar to colitis, and it can cause the colon to appear as it would during a flare. Though Joe's culture returned negative, false negatives do occur, so to be cautious and certain, he is being treated with two heavy antibiotics.
To summarize, here is a time line:
*June 27th - Maxed out Remicade Infusion #1
*June 29th - Consult with GI surgeon regarding total removal of the colon
*Early July - Add the immunosuppressant Azathioprine to the mix if genetics permit (Dr. Naik said Prednisone may be necessary too, but we don't even want to think about that or hear that word .... lalalalalala - our ears are plugged!)
* Late July - Maxed out Remicade Infusion #2
* Mid August - Colonoscopy to recheck status of healing vs. inflammation, Make a decision with Dr. Naik
*Late August/Early September - Still do our Sierra Nevada backpacking trip? Fingers Crossed!
Dr. Naik's actual intention for calling Joe in ASAP was to try one last effort to save his colon through an aggressive treatment approach combining the Remicade infusions with the oral immunosuppresant, AZATHIOPRINE (also known as Imuran or Azasan). Before Joe can begin Azathioprine genetic testing must be done to see if his body can utilize this medication, and if so, how quickly it will break down in his system, which will aide the doctors in knowing how much to dose him. The testing is done through blood work, which was completed yesterday, with results pending next week. In the meantime, Joe will be maxed out on Remicade. Instead of having an infusion every 8 weeks, he will have the maximum dosage available every 4 weeks beginning Monday June 27th. The following infusion will be near the end of July, and by mid-August they will take another looksee inside Joe's colon for direction on how to proceed.
Dr. Naik feels we can afford two months worth of time on this aggressive treatment before reassessing the need for a colectomy. He made it clear the goal of treatment is to preserve the colon at any cost, but that removal of the colon is sometimes the best answer. He candidly agrees with Dr. Stein (the doc who conducted the colonoscopy) that a colectomy may be necessary, but offered hope that with this dual therapy, Joe's colon may begin to heal enough to prevent or stave off the need for surgery. However, since surgery may be likely, he would like Joe to meet with the surgeon preemptively to discuss the process further, and to that end,we are scheduled to meet with the GI surgeon on June 29th.
In talking with Dr. Naik we became aware of other tell tale signs of a colitis flare that were occurring in recent weeks. For example, eye infections can be part of a flare. Maybe a month ago, Joe's eyes experienced a sudden painful, irritated redness. He saw his opthamologist and was prescribed antibiotic eye drops, but now we know this was connected to the flare - not an eye infection. Sore joints, especially in the spine or hip area, easily attributed to too much exercise, was another symptom. Dr. Naik also helped us connect the dots as to why they were considering C-diff as an interloper for a flare. Since Joe's flare began within 1-2 weeks of his last infusion, C-diff was a real possibility. For those of you who aren't familiar with C-diff, this is a nasty infection, typically found in hospital settings, which can be deadly. It's symptoms are similar to colitis, and it can cause the colon to appear as it would during a flare. Though Joe's culture returned negative, false negatives do occur, so to be cautious and certain, he is being treated with two heavy antibiotics.
To summarize, here is a time line:
*June 27th - Maxed out Remicade Infusion #1
*June 29th - Consult with GI surgeon regarding total removal of the colon
*Early July - Add the immunosuppressant Azathioprine to the mix if genetics permit (Dr. Naik said Prednisone may be necessary too, but we don't even want to think about that or hear that word .... lalalalalala - our ears are plugged!)
* Late July - Maxed out Remicade Infusion #2
* Mid August - Colonoscopy to recheck status of healing vs. inflammation, Make a decision with Dr. Naik
*Late August/Early September - Still do our Sierra Nevada backpacking trip? Fingers Crossed!
Monday, June 20, 2011
Colonoscopy #3
Joe had his "I've been on Remicade for 6 months" colonoscopy today - a standard protocol to examine the effects of Remicade. Ideally, Joe's colon would show signs of healing, and this is something we'd been hopeful for, as Joe's symptoms disappeared shortly after starting the infusions. What Dr. Stein saw today did not fulfill that hope. In clinical terms, Joe's colon shows an "active disease process" at work with moderate to severe inflammation.
There appears to be no improvement from October's frightening discovery of "corned beef" parading as a colon. BUT, the hopeful thread to hold onto is that the doctors cannot say whether or not healing occurred because Joe's current flare stands in the way of knowing what progress may have been made. Dr. Stein was able to get about half way through the colon before Joe demonstrated discomfort. He didn't see the point in going any further, having seen enough to know how the rest would look anyway - with pan colitis the entire colon is affected - and didn't want to risk perforation. Per usual, several biopsies of the colon wall were taken, with results pending in 2-3 weeks. Dr. Stein also took a stool sample to test for C-diff on the outside chance Joe is dealing with a nasty infection rather than a colitis flare. It's good the doc is being thorough, but I highly doubt C-diff is the issue here.
Once the results are in, Joe will have a follow up with his GI doc, Dr. Naik, to review his options on July 15th. Until that time he is to continue with his current treatments: Miralax twice daily, hydrocortisone suppositories every night, a low residue diet, his next Remicade infusion on July 8th, and exercise as tolerated. Joe asked Dr. Stein point blank what the odds are of keeping his colon, and received the frank reply that it doesn't look good. The longer the disease process goes on, the more desecrated the colon becomes with a reduced ability to do it's job and increased risk of perforation.
Was Remicade working? Yes. Is it still working? They don't know. Might a higher dose with supplemental steroids work? Maybe, but how will steroids further Joe's osteoporosis? These are questions we hope will be answered in July. At some point more knowledge of the pros and cons of a colectomy vs. steroidal treatments on Joe's long-term quality of life will need to be explored.
Naturally the outcome of today's exam is disappointing, but not entirely unexpected. It's frustrating for Joe to have his body betray him in this way. It's crazy to have your own immune system attacking your body. And until you really begin wasting away, people with IBD's have the added burden of people not understanding how serious it is, because the outside you doesn't necessarily reflect the inside you. Many people are surprised to know Joe is sick, saying how good and healthy he looks (does this invalidate or minimize the severity of his illness - should he look like death warmed over to be more believable?). Others who get it, are still shocked at Joe's level of functioning (11 hour work days, 15-20 miles of running per week, both done with chronic insomnia), including Dr. Stein, who was most impressed with all Joe is able to do in the face of colitis.
There appears to be no improvement from October's frightening discovery of "corned beef" parading as a colon. BUT, the hopeful thread to hold onto is that the doctors cannot say whether or not healing occurred because Joe's current flare stands in the way of knowing what progress may have been made. Dr. Stein was able to get about half way through the colon before Joe demonstrated discomfort. He didn't see the point in going any further, having seen enough to know how the rest would look anyway - with pan colitis the entire colon is affected - and didn't want to risk perforation. Per usual, several biopsies of the colon wall were taken, with results pending in 2-3 weeks. Dr. Stein also took a stool sample to test for C-diff on the outside chance Joe is dealing with a nasty infection rather than a colitis flare. It's good the doc is being thorough, but I highly doubt C-diff is the issue here.
Once the results are in, Joe will have a follow up with his GI doc, Dr. Naik, to review his options on July 15th. Until that time he is to continue with his current treatments: Miralax twice daily, hydrocortisone suppositories every night, a low residue diet, his next Remicade infusion on July 8th, and exercise as tolerated. Joe asked Dr. Stein point blank what the odds are of keeping his colon, and received the frank reply that it doesn't look good. The longer the disease process goes on, the more desecrated the colon becomes with a reduced ability to do it's job and increased risk of perforation.
Was Remicade working? Yes. Is it still working? They don't know. Might a higher dose with supplemental steroids work? Maybe, but how will steroids further Joe's osteoporosis? These are questions we hope will be answered in July. At some point more knowledge of the pros and cons of a colectomy vs. steroidal treatments on Joe's long-term quality of life will need to be explored.
Naturally the outcome of today's exam is disappointing, but not entirely unexpected. It's frustrating for Joe to have his body betray him in this way. It's crazy to have your own immune system attacking your body. And until you really begin wasting away, people with IBD's have the added burden of people not understanding how serious it is, because the outside you doesn't necessarily reflect the inside you. Many people are surprised to know Joe is sick, saying how good and healthy he looks (does this invalidate or minimize the severity of his illness - should he look like death warmed over to be more believable?). Others who get it, are still shocked at Joe's level of functioning (11 hour work days, 15-20 miles of running per week, both done with chronic insomnia), including Dr. Stein, who was most impressed with all Joe is able to do in the face of colitis.
Sunday, June 19, 2011
Denis Sullivan
Yesterday was the quintessential sailing day. Bright blue skies, calm waters and enough breeze to move us along and out into Lake Michigan. The Denis Sullivan is an all wood schooner that was made by volunteer hands in 2000 to replicate the kind of shipping vessels used over 120 years ago. The ship is named after a prominent captain/businessman from the late 1800's who moved goods amongst all the great lakes, with Milwaukee being his home base.
This two hour sailing tour was part of the weekend works for Joe's visiting parents (also a trip to the Waukesha farmer's market, Ethiopian food for lunch, a walk along Milwaukee's Riverwalk with the requisite picture of parent's standing next to the Fonz, and dessert at Chez Liello-Malloy with Aunt Shirley). Over the past 18 years we've taken them to every possible place of interest within a 3-hour radius of Milwaukee, so we were excited to come up with one more fresh idea - particularly knowing how the Liello's appreciate the water. Joe's parents, originally from Queens, NY grew up on the ocean and love to be on or near huge masses of water whenever they can - especially now that they live in landlocked Louisville, KY.
The crew on the DS invite you to help pull the sails up - not an easy feat! Joe has blood blisters to show for his efforts, and I had a thin silver bracelet rubbed off to pieces from the friction of the rope. Leaving land the temperature was in the low 70's, and within 10 minutes sailing east on Lake Michigan the temps had fallen into the 40's. There were a handful of saps on board who weren't familiar with the lake effect on temperature, and sat for two hours freezing in their short sleeved shirts, shorts and bare feet.
The Milwaukee skyline seen from the waters faded from view briefly when we reached the farthest point of the tour. There were lots of small sailboats on the lake, a couple catamarans, a slow moving barge on the horizon and even the Lake Express ferry to Michigan passed us. As we neared the shore we could hear live polka music coming from Polish Fest at the Summerfest Grounds, and we were able to really eyeball the length, height and span of the Hoan Bridge that we'll have to run up and over in next month's race. More on that in another blog :)
The Milwaukee skyline seen from the waters faded from view briefly when we reached the farthest point of the tour. There were lots of small sailboats on the lake, a couple catamarans, a slow moving barge on the horizon and even the Lake Express ferry to Michigan passed us. As we neared the shore we could hear live polka music coming from Polish Fest at the Summerfest Grounds, and we were able to really eyeball the length, height and span of the Hoan Bridge that we'll have to run up and over in next month's race. More on that in another blog :)
Sunday, June 12, 2011
Waukesha Weekly
What a week. A rough week with some highs and some lows. Here are the highlights.
JOY
JOY
- Ran her 500th mile of 2011 this week
- Found on the Lake 2 Lake 10k results page that she placed 4th in her age category, missing out on a 3rd place medal by 36 seconds ... if only she had run through the aide stations instead of taking a momentary breather
- Met with the family of her deceased client and learned of new evidence that makes it clear his death was a suicide. While it offers some relief and peace to have an answer on whether the death was accidental or intentional, it's ultimately a painful loss that continues to interrupt thoughts and threaten tears with no notice
- Has decided to explore what it would take to become a physician's assistant (PA)
JOE
- Found on the Lake 2 Lake results page that he placed 4th in his age category (just as Joy did!)
- 6 months into Remicade - the hoped for miracle drug - he has begun to have a flare. He contacted his GI doctor immediately on Friday. Blood work and x-rays were taken, hydrocortisone suppositories were ordered and a plan will be hatched this week
- Learned the company he has worked the past 17 years with, RMT, has been sold to a larger company called TRC. At this point it does not seem to be a negative change - his job, clients, benefits, are not in jeopardy
MISCELLANY
- CONGRATULATIONS to Laura & Kris on the birth of their second daughter, Annika Bernadine, born June 2nd, 2011 ... 7 pounds, 14 oz., dark hair. All are healthy and well
- The mind numbing kitchen cabinet refurbishing project is nearing an end, which will help to preserve Joy & Joe's sanity
- The Liello's will be in town next weekend for a series of secret new adventures!
- Joy & Joe continue to take pleasure in watching a frequent flyer fox in their yard.
Sunday, June 5, 2011
Race #22
Today I ran my 22nd race since I fashioned myself into a runner. Heather, Joe & I met in the Northern Kettle Moraine Unit to run the 3rd Annual Lake 2 Lake Trail 10k. A lucky day of no humidity - sandwiched between days of unbearable stickiness - we had bright blue skies, a slight breeze, and tons o' sun.
A school bus shuttled us from Mauthe Lake to Long Lake where about 200 runners would pound down a crushed limestone path 6.2 miles to the finish. The course was certainly pretty with lush green foliage around us, but not above us. Translation: no shade made the unfamiliar sun a burden to bear. After a cold, cloudy spring, we have had little exposure to the sun or temps above 50°, making today's sun drenched 80° a lot to endure. BUT, aside from heart rates being higher than normal (the heat) and a twinge of nausea here & there, we all PR'd.
Joe came in at 47:46 (on only 2 hours of sleep), clocking a 7:42 pace! Can I get a Damn! in the house? I surpassed my goal pace (10:00) finishing in 1:01 - a 9:53 pace (Say What???!!!) and Heather, running her first 10k, came in at a very respectable 1:08 - roughly an 11 minute pace. The guy who won the whole shebang? He finished in 34 minutes. Ridiculous.
The three of us will tackle the Hoan Bridge next month in the inaugural Summerfest "Rock-n-Sole" 10k, July 10th. Until then, it's a little bit of rest, and then lots of training, including the much dreaded, yet much needed hill repeats!
Friday, June 3, 2011
Distressd Ruminations
I am not familiar with human death. No one close to my life has died, and while I have lost clients to suicide (which is sad, but understandable) or physical health crises, I have not lost a client to an ambiguous death until now.
Memorial Day weekend was sprinkled with a local news story about a body found near Lodi, WI (about 2 hours from here) on Gibraltar Rock - a beautiful bluff used for hiking and illegal rock climbing. The story grabbed me as all outdoor stories do, so imagine my utter shock and devastation to learn that it was the body of one of my clients. My discovery came on Tuesday. I sauntered into work after a chill 4-day weekend to a mess of voice mails. Voicemail #1 was a discombobulated message from a worker at the supervised apartment my client lived in. She said something about "he left for work", "an accident", "sheriff's are here" and I pieced those tidbits together to mean my client had a bad car accident. Voicemail #3 is my client's father stating, "By now I'm sure you've heard he is dead." WHAT??? My hands begin shaking like I have Parkinson's.
I call the father back, still under the erroneous assumption that his son died in a car accident. As he begins talking, what he says doesn't make sense with the story I've constructed, so I ask him to tell me exactly what happened. This is when I had the sickened enlightenment that the news story of the weekend was connected to me. All we know, and all we may ever know, is that my 29 year old client, who was doing extremely well, fell at least 100 ft.. He was found by hikers, already dead, within 60-90 minutes of his estimated arrival to Gibraltar Rock. Foul play has been ruled out.
Did he fall or jump? That's the question that keeps me mired in sadness. I can identify evidence to support either possibility, and just when I'm certain I have hit on the correct answer, my mind sets out on another train of thought, leading me to a new conclusion. The bottom line is if it was an accident, it's awful and if it was intentional, it's awful. This death is made harder by my closeness to the family. Several years ago we worked hard and intensely together to get their son the help he needed. That experience, coupled with the amazing recovery and growth their son made over the past several years, made me a part of the family. Tomorrow I'll attend the service to say goodbye to my client, and to his family.
Memorial Day weekend was sprinkled with a local news story about a body found near Lodi, WI (about 2 hours from here) on Gibraltar Rock - a beautiful bluff used for hiking and illegal rock climbing. The story grabbed me as all outdoor stories do, so imagine my utter shock and devastation to learn that it was the body of one of my clients. My discovery came on Tuesday. I sauntered into work after a chill 4-day weekend to a mess of voice mails. Voicemail #1 was a discombobulated message from a worker at the supervised apartment my client lived in. She said something about "he left for work", "an accident", "sheriff's are here" and I pieced those tidbits together to mean my client had a bad car accident. Voicemail #3 is my client's father stating, "By now I'm sure you've heard he is dead." WHAT??? My hands begin shaking like I have Parkinson's.
I call the father back, still under the erroneous assumption that his son died in a car accident. As he begins talking, what he says doesn't make sense with the story I've constructed, so I ask him to tell me exactly what happened. This is when I had the sickened enlightenment that the news story of the weekend was connected to me. All we know, and all we may ever know, is that my 29 year old client, who was doing extremely well, fell at least 100 ft.. He was found by hikers, already dead, within 60-90 minutes of his estimated arrival to Gibraltar Rock. Foul play has been ruled out.
Did he fall or jump? That's the question that keeps me mired in sadness. I can identify evidence to support either possibility, and just when I'm certain I have hit on the correct answer, my mind sets out on another train of thought, leading me to a new conclusion. The bottom line is if it was an accident, it's awful and if it was intentional, it's awful. This death is made harder by my closeness to the family. Several years ago we worked hard and intensely together to get their son the help he needed. That experience, coupled with the amazing recovery and growth their son made over the past several years, made me a part of the family. Tomorrow I'll attend the service to say goodbye to my client, and to his family.
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