Yuck. Got pouchitis. I am not sure how or why, but I began showing symptoms about 12 days ago. Pouchitis is an inflammation of the ileal pouch (or j-pouch) and presents with urgency, bloody diarrehea and an increase in frequency. I first noticed urgency, then blood. As I have mentioned before, frequency is an ongoing issue for me, pouchitis or not. Pouchitis becomes a chronic issue for about 10% of pouch owners, so I am just hoping I am not one of them.
After ten years of suffering from UC and spending the last year in a seemingly infinite state of convelescence, I'm sure you can understand why I am not too psyched about having pouchitis. Antibiotics seem to be helping and I have also been taking the potent probiotic, VSL #3. For now I am feeling much better, but I am concerned that I may need long-term antibiotics to keep the pouchitis at bay. Hopefully not. But in reality, if that were the case I would be lucky. Worst case scenario is "bye bye pouch" (ie permanet ileostomy). Still not terrible. Perhaps living with an ileostomy bag or pouchitis is not ideal, but one thing I am sure of is it is better than the alternative.
On Thursday the bank I work for will be hosting a bone marrow drive to see if we can find a match for a six year-old Acute Lymphocytic Leukema patient. The boy, Colin, was diagnosed shortly before Christmas and spent the holidays and the entire month of January hospitalized undergoing intensive chemotherapy treatments. Reading about this was the equivalent of ripping my heart out and stomping on it, and I truly hope that I or one of my coworkers will be able to make a life-saving donation to this truly heroic child. Colin refuses to tell his younger brother of his disease because he does not want him to worry.
Why do I bring this heartwrenching story up in a UC blog? Mostly to provide persepective. If six year-old Colin can hold on to hope and exhibit such selfless dignity in such deeply dire times, I just have to feel lucky, extremely lucky, that my worst case scenario would be a life-enhancing bag that would allow me to live. Colin might not be so lucky.
Tuesday, February 21, 2012
Sunday, February 12, 2012
Post-Colectomy/Laparotomy Scars
Looking back at my most popular blogs, I noticed that my most popular post was the one I wrote about my scars nearly eight months ago. I realized that I had promised to update on the progression, or healing, of these scars at certain intervals, so here we go. As a fairly vain twenty-something year old, I know I was curious enough to know what my body would look like post-total colectomy. In fact, my surgeon confessed that many women will not use him for this particular surgery because he refuses to perform it laparoscopically. He sees it as simply too dangerous to perform such a major surgery without full view of the abdominal cavity. After having almost lost my father to a robotic surgery gone very wrong for this very reason (the surgeon, one of the "world's best" accidentally, and unknowingly, perforated his bowel while removing his prostate. This went undiagnosed for several days while my father was suffering from peritonitis), I opted for the safer option and the uglier abdomen. A small price to pay if you ask me.
Now, keep in mind these scars are fairly fresh. I was re-opened in November of 2011 due to a high-grade small bowel obstruction. You will notice a small and very faint scar on the left side of my abdomen from the sump (healing VERY nicely). The ileostomy scar on the right is also healing well and is approximately eight months old. I had a fairly persistent issue with abscesses following my takedown surgery so, unfortunately, that scar has been through hell and back. Though still raw and purple, the main incision is still healing very well and is really fairly thin. The scar continues down a few inches further.
I will be sure to update again with more scar pictures in a few months. For those of you who think you'll die without your bikini next summer, all I can say is I still had a pretty grand time in Bora Bora in a one-piece.
Monday, February 6, 2012
The Daily Life of a J-Pouch
It's been a while since my last post and I have been thinking that this is perhaps a good sign. Whenever I run into health hurdles, I turn to my blog for self-therapy. As my friend Jen put it in a FB post, "Writing: a profession for introverts who want to tell you a story but don't want to make eye contact while telling it." Therefore, a lack of posts is a good indication of my well-being since there is, effectively, no "story" to tell about a lack of good health. But I thought that for those of you out there that are faced with J-Pouch surgery, it would probably be helpful for me to describe "J-Pouch life at it's best."
It has been almost 11 months since my first surgery, which included a total colectomy, creation of J-Pouch (ileo-anal pouch anastamosis) and creation of an ileostomy. For those of you that follow my blog or know me personally, you know that I had a second surgery in June 2011 to reverse the ileostomy and a third surgery in November 2011 due to a high-grade small bowel obstruction that required an exploratory laparotomy and an eleven-day hospital stay. Now, you might think that running into very serious complications from J-Pouch surgery (extensive Portal Vein Thrombosis, several paralytic ileus, intra-abdominal abscess, several infections and a high-grade small bowel obstruction) might make me quite skeptical about the benefits of this life-changing surgery. That couldn't be further from the truth.
Every morning I wake up and every night I go to bed, I still smile at the fact that I am no longer on ANY medications. I no longer worry about flares, about becoming debilitatingly ill or whether or not I'll be able to go on that trip I booked for the Summer. Of course, I now worry about small bowel obstructions, the chance of J-Pouch failure and permanent ileostomy, global warming and the scary, although unlikely, prospect of Newt Gingrich becoming President of the US of A. I'm learning how to control these anxieties, though, and realizing that life tends to take it's own course of which I have no control. For now, I just feel downright lucky to be living a healthy life.
Daily life with a J-Pouch? I have to empty my pouch around 5-10 times/day. It is highly dependent on what I eat or how convenient it is to access a bathroom. I say empty my pouch because that is what it feels like. It's a different sensation than before and I'd actually like to describe it as almost sensation-less. You learn how to build your muscles around the area to be able to hold the stool in. The longer you hold it, the more uncomfortable it becomes but I have NEVER had a problem with incontinence, pain, blood, tenesmus (the urge to defecate when there is nothing there, this happened to me often with UC), or extreme frequency (with a bad UC flare I used the bathroom anywhere from 25-40 times/day).
One issue I have had is with gas. I no longer have the ability to pass gas without passing stool. This can cause some discomfort as I try to hold gas in for long periods of time as to not be running to the bathroom too frequently. Overall, though, I see it as a non-issue as the benefits of no longer living with UC and the extreme pain and anxiety that come along with the disease (not to mention the frequent need to take a "time-out" from life and all its acitivites over the past ten years) far outweigh any of the small inconveniences of living with a J-Pouch.
If you are faced with J-Pouch surgery and have any questions at all, please ask! It's a daunting surgery and it's a long road to recovery, but once you're there you will never want to turn back.
It has been almost 11 months since my first surgery, which included a total colectomy, creation of J-Pouch (ileo-anal pouch anastamosis) and creation of an ileostomy. For those of you that follow my blog or know me personally, you know that I had a second surgery in June 2011 to reverse the ileostomy and a third surgery in November 2011 due to a high-grade small bowel obstruction that required an exploratory laparotomy and an eleven-day hospital stay. Now, you might think that running into very serious complications from J-Pouch surgery (extensive Portal Vein Thrombosis, several paralytic ileus, intra-abdominal abscess, several infections and a high-grade small bowel obstruction) might make me quite skeptical about the benefits of this life-changing surgery. That couldn't be further from the truth.
Every morning I wake up and every night I go to bed, I still smile at the fact that I am no longer on ANY medications. I no longer worry about flares, about becoming debilitatingly ill or whether or not I'll be able to go on that trip I booked for the Summer. Of course, I now worry about small bowel obstructions, the chance of J-Pouch failure and permanent ileostomy, global warming and the scary, although unlikely, prospect of Newt Gingrich becoming President of the US of A. I'm learning how to control these anxieties, though, and realizing that life tends to take it's own course of which I have no control. For now, I just feel downright lucky to be living a healthy life.
Daily life with a J-Pouch? I have to empty my pouch around 5-10 times/day. It is highly dependent on what I eat or how convenient it is to access a bathroom. I say empty my pouch because that is what it feels like. It's a different sensation than before and I'd actually like to describe it as almost sensation-less. You learn how to build your muscles around the area to be able to hold the stool in. The longer you hold it, the more uncomfortable it becomes but I have NEVER had a problem with incontinence, pain, blood, tenesmus (the urge to defecate when there is nothing there, this happened to me often with UC), or extreme frequency (with a bad UC flare I used the bathroom anywhere from 25-40 times/day).
One issue I have had is with gas. I no longer have the ability to pass gas without passing stool. This can cause some discomfort as I try to hold gas in for long periods of time as to not be running to the bathroom too frequently. Overall, though, I see it as a non-issue as the benefits of no longer living with UC and the extreme pain and anxiety that come along with the disease (not to mention the frequent need to take a "time-out" from life and all its acitivites over the past ten years) far outweigh any of the small inconveniences of living with a J-Pouch.
If you are faced with J-Pouch surgery and have any questions at all, please ask! It's a daunting surgery and it's a long road to recovery, but once you're there you will never want to turn back.
Friday, December 23, 2011
In Anticipation of an Emotional New Year!
2011. What a year. It began with a fairly serious flare of Ulcerative Colitis, not my worst clinically, but my worst emotionally as I knew what the failure of the last-ditch medication, Remicade, signalled. Here was my year in a nutshell:
January: Successful infusion of the chemotherapy drug, Remicade. Hopeful for remission.
February: UC flare exacerbated.
March: Remicade infusion induces anaphylactic shock. Within two weeks I had lost my job and was in the hospital undergoing a major open abdominal surgery that entailed a panproctocolectomy (removal of large intestine and rectum), ileoanal anastamosis (creation of a new rectum-like organ using the ileum, aka end of small intestine), and creation of ileostomy (a hole created on the right side of my abdomen where my small intestine was pulled through. The small intestine had a small hole whereby stool would pass into an external bag).
April: Readmitted to hospital with extensive PVT (Portal Vein Thrombosis), bladder infection, and paralytic ileus. The PVT, blood clots in the portal and mesenteric veins leading to the liver, required a 24-hour heparin infusion to begin anticoagulation proceess, week-long hospital stay, then twice-daily self-injected Lovenox shots, four CT Scans to monitor, daily Coumadin, and weekly INR monitoring for three months until my takedown surgery.
May: Continuation of weekly INR monitoring at primary care physician. Extensive work-up with Hematologist and Vascular Surgeon to check for genetic predispostion to clotting and to monitor PVT. Continued to heal from extensive abdominal surgery and emotionally adjust to ileostomy.
June: Began with pouchagram, a radiological imaging to check J-Pouch for leaks and assess it's usability/determine whether it is ready for takedown surgery. This procedure is painful as your pouch is not quite healed, be sure to make sure radiology team knows what a pouchagram is if you need to undergo this procedure! My takedown surgery took place at the end of June and was, thankfully, successful. After a week-long hospitalization, I was sent home without an ileostomy and full use of my J-Pouch. Downside was I had a very large and deep hole in my abdomen from where the ileostomy used to be which needed careful monitoring because...
July: Readmitted to hospital with abscess under old ileostomy site. After four more days of intravenous antibiotics, I was able to skirt an IR (Interventional Radiology) surgery to drain abscess and was able to return home.
August: Return of abscess. Thankfully, did not require hospitalization, but did require careful monitoring and wound care.
September: Started a job!! Finally feeling well enough to get back to work.
October: I got married (check out quick slideshow of event)!!! To the most wonderful man on earth (Dad, you're the most wonderful too). Also took the trip of my lifetime to Bora, Bora in French Polynesia. Life was good.
November: Rushed to hospital via ambulance at 3am while experiencing severe abdominal pain. After four days of monitoring with NG tube, the doctors were finally able to get a clear CT image and I was taken into surgery. The scar tissue from my previous surgeries caused a complete SBO (small bowel obstruction). My surgeon had to make another large incision through the middle of my abdomen to lyse the adhesions and free my bowel while doing an exploratory laparotomy. Thankfully, no resection was required as a piece of bowel that was dying revived itself. After 11 days of NPO (no food or water) and 11 days in the hospital, I returned home for another recovery.
December: Returned to work, enjoyed a late Thanksgiving feast, and am now looking forward to a wonderful Christmas and hopeful for a healthy New Year.
2011 saw the highest and lowest moments of my life. Many lessons were learned and many experiences were had. I just hope 2012 is less eventful.
Merry Christmas, Happy Holidays and Happy New Year to all of my blog readers! You have been such a wonderfully supportive piece of the intricate puzzle that was this past year. This blog has been read more than 8,000 times by people in over 60 countries and I hope that you will keep reading to see how 2012 pans out. Hopefully, I will be able to provide some insight into J-Pouch life at its best.
January: Successful infusion of the chemotherapy drug, Remicade. Hopeful for remission.
February: UC flare exacerbated.
March: Remicade infusion induces anaphylactic shock. Within two weeks I had lost my job and was in the hospital undergoing a major open abdominal surgery that entailed a panproctocolectomy (removal of large intestine and rectum), ileoanal anastamosis (creation of a new rectum-like organ using the ileum, aka end of small intestine), and creation of ileostomy (a hole created on the right side of my abdomen where my small intestine was pulled through. The small intestine had a small hole whereby stool would pass into an external bag).
April: Readmitted to hospital with extensive PVT (Portal Vein Thrombosis), bladder infection, and paralytic ileus. The PVT, blood clots in the portal and mesenteric veins leading to the liver, required a 24-hour heparin infusion to begin anticoagulation proceess, week-long hospital stay, then twice-daily self-injected Lovenox shots, four CT Scans to monitor, daily Coumadin, and weekly INR monitoring for three months until my takedown surgery.
May: Continuation of weekly INR monitoring at primary care physician. Extensive work-up with Hematologist and Vascular Surgeon to check for genetic predispostion to clotting and to monitor PVT. Continued to heal from extensive abdominal surgery and emotionally adjust to ileostomy.
June: Began with pouchagram, a radiological imaging to check J-Pouch for leaks and assess it's usability/determine whether it is ready for takedown surgery. This procedure is painful as your pouch is not quite healed, be sure to make sure radiology team knows what a pouchagram is if you need to undergo this procedure! My takedown surgery took place at the end of June and was, thankfully, successful. After a week-long hospitalization, I was sent home without an ileostomy and full use of my J-Pouch. Downside was I had a very large and deep hole in my abdomen from where the ileostomy used to be which needed careful monitoring because...
July: Readmitted to hospital with abscess under old ileostomy site. After four more days of intravenous antibiotics, I was able to skirt an IR (Interventional Radiology) surgery to drain abscess and was able to return home.
August: Return of abscess. Thankfully, did not require hospitalization, but did require careful monitoring and wound care.
September: Started a job!! Finally feeling well enough to get back to work.
October: I got married (check out quick slideshow of event)!!! To the most wonderful man on earth (Dad, you're the most wonderful too). Also took the trip of my lifetime to Bora, Bora in French Polynesia. Life was good.
November: Rushed to hospital via ambulance at 3am while experiencing severe abdominal pain. After four days of monitoring with NG tube, the doctors were finally able to get a clear CT image and I was taken into surgery. The scar tissue from my previous surgeries caused a complete SBO (small bowel obstruction). My surgeon had to make another large incision through the middle of my abdomen to lyse the adhesions and free my bowel while doing an exploratory laparotomy. Thankfully, no resection was required as a piece of bowel that was dying revived itself. After 11 days of NPO (no food or water) and 11 days in the hospital, I returned home for another recovery.
December: Returned to work, enjoyed a late Thanksgiving feast, and am now looking forward to a wonderful Christmas and hopeful for a healthy New Year.
2011 saw the highest and lowest moments of my life. Many lessons were learned and many experiences were had. I just hope 2012 is less eventful.
Merry Christmas, Happy Holidays and Happy New Year to all of my blog readers! You have been such a wonderfully supportive piece of the intricate puzzle that was this past year. This blog has been read more than 8,000 times by people in over 60 countries and I hope that you will keep reading to see how 2012 pans out. Hopefully, I will be able to provide some insight into J-Pouch life at its best.
Tuesday, November 29, 2011
A Season of Introspection
It's been three years since my friend Jana's life was taken from her by leukemia at the age of 21. Twenty-One. Jana touched so many lives and the ones she has affected will never be the same. Those that were closest to Jana are some of the happiest, most charitable and most motivated people that I have the pleasure of knowing and they are that way because of the memory of her. Even three years after her death, Jana is still exuding grace, beauty and strength and I know that I personally would not be in the mentally sound place I am today without her. Every time I am wheeled into the OR, put in an ambulance, or given bad news regarding my health, I think of her, and even in those moments I feel like the luckiest person alive.
The more issues I run into with my health, the more I am able to appreciate the delicacy of life. Now that the holidays are here, I feel this even more acutely. I spent Thanksgiving in a hospital bed, in pain, unable to eat or even drink water. But it was the most meaningful Thanksgiving of my life. As my beautiful husband and faithful parents sat by my bed last Thursday, all I could think of was how lucky I am that I am still here, that I still have my father after all of his health issues, that I found the most amazing man on the face of the earth that stands by my hospital bed through thick and thin and that I have a mother to go home to to nurse me back to health.
I have also been so lucky to have so many friends and family come to visit in the hospital and here at home as I recover yet again. It's hard to feel sorry for yourself when you have a support system the size of the Third Reich (although mine is much more well-meaning). And now that it's almost Christmas time I want to ask those closest to me for the most meaningful present I could possibly ask for. Take care of yourself and cherish what you have. Change what you can. Accept what you can't. I hate seeing people watch my pain and then walk back to poisonous lifestyles. This Christmas, I want more than anything for my pain to not be in vain. Let's turn it into something beautiful; a gift like the one Jana has given to so many others. Perche la vita dovrebbe essere bella. (Because life should be beautiful).
The more issues I run into with my health, the more I am able to appreciate the delicacy of life. Now that the holidays are here, I feel this even more acutely. I spent Thanksgiving in a hospital bed, in pain, unable to eat or even drink water. But it was the most meaningful Thanksgiving of my life. As my beautiful husband and faithful parents sat by my bed last Thursday, all I could think of was how lucky I am that I am still here, that I still have my father after all of his health issues, that I found the most amazing man on the face of the earth that stands by my hospital bed through thick and thin and that I have a mother to go home to to nurse me back to health.
I have also been so lucky to have so many friends and family come to visit in the hospital and here at home as I recover yet again. It's hard to feel sorry for yourself when you have a support system the size of the Third Reich (although mine is much more well-meaning). And now that it's almost Christmas time I want to ask those closest to me for the most meaningful present I could possibly ask for. Take care of yourself and cherish what you have. Change what you can. Accept what you can't. I hate seeing people watch my pain and then walk back to poisonous lifestyles. This Christmas, I want more than anything for my pain to not be in vain. Let's turn it into something beautiful; a gift like the one Jana has given to so many others. Perche la vita dovrebbe essere bella. (Because life should be beautiful).
Sunday, November 27, 2011
Discharge Today?
I just ate a bagel. Holy sh&t. After 11 days of NPO (no food or water). And so far it's staying down. The past eleven days have had their ups and downs (mostly downs, unfortunately), but things are FINALLY looking up and I am really hoping to be out of the hospital today. Thank god the piece of bowel that they may have needed to re-operate on seems to have revived itself. Awesome. I am keeping food down. Awesome. My spirits are up. Awesome. I ate. F(*^&g really awesome.
My reintroduction to liquids went poorly, I have a urinary infection and have been having some super serious dehydration issues because of my lack of large intestine (your large intestine absorbs water for your body, so when it is missing hydration can be very tricky). I have spent most of the past eleven days with an NG tube, no food, no water, not able to move much at all, and only being able to speak minimally. Today, I am up and about, rapping in my chair (yes, rapping like Biggie Smalls) ha!, and feeling really optimistic about my prognosis.
Because I had this obstruction and because they had to open me up again, I am more prone to this happening again in the future. There is nothing I can do to prevent it. This means, of course, that I will worry. But it also means that I am going to hold onto every moment I have more preciously. Every time I get to gorge myself with brie cheese, swim in the ocean, walk home from work, or be at home with my dog and my husband will be cherished. I truly believe that only people that have had serious struggles with their health are able to obtain this kind of gratefulness for life, and for that I feel very lucky.
Now, let's hope for a good night's sleep in my own bed tonight and then back to work at healing another incision and rebuilding my sense of security. Because, hey, who knows when the Rapture is really coming, so it seems illogical to worry. But this whole thing sure did come as a shock.
My reintroduction to liquids went poorly, I have a urinary infection and have been having some super serious dehydration issues because of my lack of large intestine (your large intestine absorbs water for your body, so when it is missing hydration can be very tricky). I have spent most of the past eleven days with an NG tube, no food, no water, not able to move much at all, and only being able to speak minimally. Today, I am up and about, rapping in my chair (yes, rapping like Biggie Smalls) ha!, and feeling really optimistic about my prognosis.
Because I had this obstruction and because they had to open me up again, I am more prone to this happening again in the future. There is nothing I can do to prevent it. This means, of course, that I will worry. But it also means that I am going to hold onto every moment I have more preciously. Every time I get to gorge myself with brie cheese, swim in the ocean, walk home from work, or be at home with my dog and my husband will be cherished. I truly believe that only people that have had serious struggles with their health are able to obtain this kind of gratefulness for life, and for that I feel very lucky.
Now, let's hope for a good night's sleep in my own bed tonight and then back to work at healing another incision and rebuilding my sense of security. Because, hey, who knows when the Rapture is really coming, so it seems illogical to worry. But this whole thing sure did come as a shock.
Wednesday, November 23, 2011
Day 2 Post-Op
Day Two Post-Op:
I woke up from surgery on Monday afternoon, so happy to have lived through the procedure. They did a CT Scan on Sunday night and found some "disturbing" results and moved up my surgery to an emergency slot. It's a good thing they did, I had a piece of bowel that was dying.
My doctors and family let me stay blissfully unaware of this problematic piece of bowel for most of the day Monday. I was told by my doctors on Monday night that they will have to keep a very close eye on me, because around Day 5-7 Post-Op we may run into more troubles again. They were able to get rid of the adhesions that were causing the blockage (it was a High-Grade Complete Obstruction), but there was a piece of the bowel involved that was purplish, almost black and may require a resection of the bowel. He was not able to resect while operating on Monday because my bowel was much too distended, rendering the procedure too dangerous to perform.
So, while I am starting to feel better and hope I am on the road to a full recovery, I do nervously await Days 5-7 Post-Op because I REALLY do not need any more surprises. I have also been told that I am at higher risk for obstructions in the future because of this one, so I think this surgery is going to be perhaps the toughest one to tackle mentally. But, hey, I could be hit by lightning tomorrow so worrying doesn't seem logical (although much easier said than done).
Will update again when any significant strides are made. For now, I am still NPO (off food and water) and it has been one week now so I am starting to feel a bit grumpy. Looks like I will probably be NPO for Thanksgiving too. Oh well.
Well, have a Happy Turkey Day everyone….and, please, be so very thankful for your health!
I woke up from surgery on Monday afternoon, so happy to have lived through the procedure. They did a CT Scan on Sunday night and found some "disturbing" results and moved up my surgery to an emergency slot. It's a good thing they did, I had a piece of bowel that was dying.
My doctors and family let me stay blissfully unaware of this problematic piece of bowel for most of the day Monday. I was told by my doctors on Monday night that they will have to keep a very close eye on me, because around Day 5-7 Post-Op we may run into more troubles again. They were able to get rid of the adhesions that were causing the blockage (it was a High-Grade Complete Obstruction), but there was a piece of the bowel involved that was purplish, almost black and may require a resection of the bowel. He was not able to resect while operating on Monday because my bowel was much too distended, rendering the procedure too dangerous to perform.
So, while I am starting to feel better and hope I am on the road to a full recovery, I do nervously await Days 5-7 Post-Op because I REALLY do not need any more surprises. I have also been told that I am at higher risk for obstructions in the future because of this one, so I think this surgery is going to be perhaps the toughest one to tackle mentally. But, hey, I could be hit by lightning tomorrow so worrying doesn't seem logical (although much easier said than done).
Will update again when any significant strides are made. For now, I am still NPO (off food and water) and it has been one week now so I am starting to feel a bit grumpy. Looks like I will probably be NPO for Thanksgiving too. Oh well.
Well, have a Happy Turkey Day everyone….and, please, be so very thankful for your health!
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