J-pouch Redo, Part II

by on Monday, February 17, 2014 16:12

File this entry under: Coping/Support


Hey, friends. If you’ve followed my story you know it’s been a frustrating 8 years since the inception of my J-pouch.  A post-colectemy, end-ileostomied 22 year old Liz wondered, “Should I do this J-Pouch thing? Do I really need a J-pouch? I don’t mind the ostomy…It works great, I feel better. But, if there’s an internal option, I’ll probably do that.” Because, you know, although I was 22 and dating someone, I knew he wasn’t THE one.  And although I could deal with an ostomy, it seemed like a lot to introduce to most college-aged guys.  Anything internal seemed more convenient vs. an external bag.  So, that’s what I did. I got a J-pouch.

At the time, I had a wonderful surgeon who had a high success rate.  A three-step J-pouch procedure was performed in 2005 in May, October, and December, respectively.  I felt great after the colectemy.  After the J-pouch creation I felt not-so-great. I had a fever and horrible pain in the hospital.  It was a pretty brutal surgery.  The takedown was a breeze and although I spent the next year dealing with a recurrent stricture and chronic pouchitis, things were so much better than they’d been before the colectemy, I thought I was home free.  I wasn’t crapping exclusively blood 30 times a day, writhing around in my bathroom floor praying for relief or death anymore-anything was an improvement!

Then came more mechanical problems including prolapse (the pouch came out of my bottom so much that I had to push it back inside) and a twice-twisted pouch (ouch!), more surgeries, and a Crohn’s diagnosis.  Then I started a biologic that scared the hell out of me, but all other drugs had failed, so I succumbed.  I took it in combination with 6mp, a chemo drug that I’d taken many times before surgery. I took hand fulls of antibiotics for chronic pouchitis on a daily basis and rotated them when necessary.

Despite worsening problems like photo-sensitivity to any sunlight (turn lobster red from 20 min in the sun and start vomiting), severely swollen joints (I could barely walk and couldn’t bend my knuckles) all my doctors blamed Crohn’s and upped my meds. I got sicker and sicker, then after insisting on a slew of blood work to check for some of those scary-ass biologic side effects, I was diagnosed with drug-induced lupus and stopped the biologic.  I considered going to Northwestern to have my body blasted with chemo and rebuilt with stem-cells, but through divine providence a better option presented itself.  I got my arse to Cleveland Clinic, the hub of pouches, and in TWO DAYS got a proper diagnosis of IGG4 autoimmune pouchitis and an improperly constructed pouch.  After an improved 3 years of trying pouch guru Dr. Bo Shen’s tricks, my pouch finally gave out on me in early 2013.  He told me from the inception of our treatment I may have to eventually have a reconstruction of the J-pouch or have a permanent ostomy, though he was not excited about either of those options.  But at least I was prepared for it.

By the beginning of 2013, I was miserable.  I had constant, more intense pelvic pain, my stomach was so swollen I looked 5 months pregnant. I also had symptoms of a fistula and one showed up on an MRI, so I went back to Cleveland in March 2013 for a fistula surgery with Dr. Remzi, the surgeon recommended to me by Dr. Shen.  During that surgery, Remzi examined my pouch and said essentially that my pouch was a hot mess and had to be redone or cut out. He thought it was responsible for 90% of my problems.  So, after a few months of deliberation, worsening symptoms, I knew he was right.  I scheduled the first surgery to revamp my pouch: a temporary loop ileostomy in June 2013.  The ostomy was necessary to give my infected pouch time to rest.  After the surgery, with the J-pouch in rest (or limbo) I immediately lost 10 pounds that I never regained after that surgery. (Full of shit anyone?)  I felt pretty good through the recovery, and I hoped I could just enjoy my new ostomy and let the J-pouch hang dormant, but no such luck. I developed diversion pouchitis which meant I was passing blood through my pouch, had low-grade fever, arthritis flares, and generally felt awful.  Combined with a high-output ileostomy which denied my body of nutrients and hydration, I lost about 16 pounds in two weeks. My body was sick again. After following a strict high-protein diet, coupled with gallons of Pedalyte, handfulls of immodium, and daily enemas for the diversion pouchitis, I saw vast improvement.  Still, I had pain and occasional bleeding.  Also, I passed a lot through the old pouch (thank you, loop ileo) and it was just too much damn maintenance.  The special enemas were expensive, and I just wanted ONE butthole-not too much to ask for, right? So, after months of deliberation, I decided I’d try for the J-pouch redo with Dr. Remzi at Cleveland Clinic.

A former surgeon in Oregon who was on the right diagnostic track back in 2010, told me my rectal cuff was way too long and needed to be shortened, but said the surgery had a high failure rate (success less than 10%) and that no surgeon would attempt it, that I’d have to have my pouch amputated and have a permanent ostomy.  I was fine with the ostomy option, but less thrilled with the prospect of losing that much of my small intestine. So, when I found out Remzi’s success rate for a J-pouch reconstruction, shortened rectal cuff and all was 85%, and that there was a chance he could salvage the old pouch, I figured I have to try; mostly to save what’s left of my guts. (By the way, thanks to all you guys for the support on that decision! I love my Jpouch.net family!)

I had the reconstruction just over a month ago. Every single doctor from Shen to Remzi to the nurses, told me how horrible this surgery would be.  Dr. Shen could barely talk to me about it because he knew what I was about to go through. He would just shake his head, look down and say, “Okay to do.” I believed them all and I dreaded it right up to the moment they put the oxygen mask on me in the operating room. I kept thinking, “It’s not too late…I can jerk the IV out of my arm and bolt out of here. The crazy expensive enemas aren’t so bad. Shitting blood’s not so bad.” But, then I realized, it really was. The pouch hurt so much. It always had, even when it wasn’t officially working. It had to be redone or come out and for the sake of preserving what’s left of my insides, I decided to try the option that might let me keep what’s left.  So, I sucked it up, sucked in the oxygen and passed out on the table and let Remzi work his magic.

This was approximately my 15th surgery. (I’ve lost count of some of the “lesser” surgeries like stricture dilations, etc.)  and, it was rough. I had my first epidural before the surgery. I always incorrectly assumed an epidural was a single shot that provided hours of blissful numbness from the waist down. Nowadays, they insert something akin to a catheter or an IV into an area by your spine and you get a button (much like a pain pump) to shoot numbing meds and Fentanyl into your back.  It worked the first day-so well that one of my legs went numb and I couldn’t move it. So, they backed off the dose. After that, the sucker came out. I knew this because there was blood all over my pillowcase, bedding, gown, etc. and my back felt wet. Despite this, and my multiple complaints, it took 3 days to have it removed.  There was a fresh new crop of interns and residents, and as a result, I had to deal with some frustrating situations.  I’ve never dealt with pain management before. My doctors have just always given me a pain pump. The end. This was a frustrating game of changing meds around and relying on an epidural that wasn’t working, so the second day I had no pain control in my pelvis-the area that had been cut open for the upteenth time, incision extended into half my “mons pubus” (aka, hello lady parts) and re-worked in the biggest surgery I’d ever had.  You couldn’t touch the area where the incision was extended without the area spasming and me jumping and yelping in pain. (I’m not a yelper!)  I was miserable. I finally got help from a wonderful ostomy nurse and a shift of new nurses who knew the epidural was not working and hadn’t been for days.  Terri and Elana were my angels. They got things done and they listened to patients and worked with them. I’d never before had an experience of not being heard or believed by a doctor.  Dr. Remzi and his fellows were fantastic, but some of the new blood on the pain management team were not.

Once I had a pain pump (which has always worked in the past), and developed my usual itchy reaction to the pain meds, a new pain management resident wanted to eliminate it because I was itching. Despite politely telling her that this was normal for me (read my chart) and that I could deal with itching, but not the level of pain I was in before (because the epidural wasn’t working), she ignored me and removed it. Unsurprisingly, the pain was back with a vengeance, and Remzi’s residents were pissed.  It finally got fixed, but I’ve never had that level of pain after surgery in my life, and never had it go untreated for so long.  I was not happy and spoke with each department head about my concerns. I was angrier from a patient advocate perspective than I was for myself, but I was mostly just shocked because my previous experience had been stellar.  I suspect new training, new interns and residents were a big part of the issue.

After this, my incision had to be reopened because of infection, I blew 8-10 IV’s (bent one with my scar tissue ridden veins) and failed 2 midline IV attempts (very rare).

 

IMAG0834

The IV graveyard.

Eventually things improved and I was discharged on day 8. My incision opened up more and I experienced tunneling for the first time.  After a follow-up appointment, a wonderful WOCN showed me how to pack it with sterile, antimicrobial ribbon gauze and saline.

Warning! Graphic incision photo:
IMAG1120

The good news is, the surgery went well and Dr. Remzi was very happy.  He mentioned what a difficult surgery it was on multiple occasions, but he was able to do the following: Shorten my too long rectal cuff, remove the recurrent stricture at the anastamosis site, clean out 8 years worth of inflammation in the pouch, and make it symmetrical and mechanically correct.  He had to give me a new ostomy (farewell, Stella!) in order for the pouch to reach my rectal cuff without stretching it and putting stress on the pouch, so the new ostomy (hello, Stella 2.0!) is about a foot higher which means it’s even higher output. So, until takedown, I have to be extra super-duper careful about nutrition and hydration.

The JP drain. Felt like the Lochness Monster coming out!
 IMAG0845

So, a lot of people asked me, “Why didn’t you just go for a permanent ostomy?” The reason is, I cannot afford to lose any more intestine, especially because I have historically high-output ostomies.  There was at least a chance with the J-pouch redo that he could salvage the old pouch (ie, no loss of intestine) and he was able to do that because Dr. Remzi is the bomb.com It also gave me more options.  There’s a 15% chance this won’t work, and if that happens, I can go to a permanent ostomy then, but IF, just if, this works, maybe I will be able to preserve the precious few guts I have left.

I should note that since the surgery I’ve had obnoxious incontinence.  I used to experience that occasionally, mostly at night, but I always knew it was happening because there was an obvious sensation “down there.” Now, there’s nothing. The mucus just runs out at its own desire and I’m alerted by the disturbing warm feeling.  I have hopes this will improve. He just did a LOT of intense work down there, so it makes sense that things are all a twitter.

Hindsight being 20/20, and this being my 15th surgery in 15 years with this damn disease, I have to say, I kind of wish I’d stopped with the end ostomy after my colectemy.  But, I didn’t. I tried and I failed.  A lot.  I really hope this time works for me because in addition to getting older, I’m getting really, really tired.  I’m ready for something to work.  I would love to have just a few years of semi-decent health.  For anyone considering a J-pouch, I urge you to think long and hard about your options. I also want to emphasize, that for MOST people, the J-pouch surgery is successful.  I am by no means a good example of the norm, but there are plenty of people out there like me.  It may shock you to know that the J-pouch surgery is not, yet, a board-certified procedure.   Dr. Remzi spends about 2/3 of his practice fixing other people’s work-either reconstructing a poorly made pouch or amputating it and giving someone a permanent ostomy. Because of that, he’s trying to make it a board-certified procedure.  I say this not to scare you, but to inform you.

Surgeries are risky business, especially surgeries that create a neo-organ.  Knowing how I felt as a 22 year old single girl and knowing the perspectives of the hundreds of women and girls I’ve counseled about these surgeries and diseases, as a patient advocate and through my work with Girls with Guts, I know the only reason people want a J-pouch is because they don’t want an ostomy.  They don’t want an ostomy because of the stigma.  So, instead of stopping at one surgery, we put ourselves through one or two more…or 14 more, in my case.  Frankly, that pisses me off.  I’m proud to do the work we do at Girls with Guts and on this blog to help raise awareness and erase the stigma of IBD, ostomies, and pouches, but through this work, I have seen how significantly the stigma affects patient’s care and health and that infuriates me.  I think of the time I could have had-the 8 years of good health I likely would have had if I had chosen the “gold standard” and stayed with the ostomy and part of me longs for that, but let me be clear: I don’t regret my choices because they’ve lead me down beautiful paths.  I love my life. I am passionate about what I do and what I do keeps me going. How many people can say that?

An example of my great friendships: An inspirational scroll and pillow from Casey & an original painting of me as a Samurai Warrior by my dear friend, Josh.
IMAG0873
IMAG0883IMAG0836

The bad experiences have put me through hell, but as a result of surviving that, I’ve been able to meet all sorts of incredible, strong patients, and just maybe help them because of those hellish learning experiences.  I’ve made friendships with people who are now family, but I do regret the suffering I’ve endured because of vanity.

The reconstruction was brutal. It was absolutely brutal.  As much pain as I’ve endured in my life, and as high as my pain tolerance is, my body felt like it had been destroyed after this surgery.  I’m starting to feel better, the giant incision is starting to heal, and the pain is beginning to abate.  I pray this works for me, but more so, I pray that patients considering this, or any surgery, will do their due diligence and seek the best care possible. I pray they will make decisions based on their health and what option will give them the best quality of life vs. which option will make you look better in a bikini. (Check out the Girls with Guts Facebook page to see how hot our ostomy girls look in their bikinis!)

Lastly, I am so grateful to the amazing staff at Cleveland Clinic’s Digestive Disease Institute who have devoted their lives and work to patients like us.  For pouch issues, there is no better place in the world to go, and I feel truly blessed to be able to seek their counsel.

 

 

 

 

 

 

 

Bad Sick Girl

by on Saturday, October 12, 2013 20:47

File this entry under: Coping/Support

Pale, scrawny, and sickly, but still got guts.

You guys know I’ve been dealing with diversion pouchitis (DP).  I have to say, I thought I was prepared for DP.  After I heard it was a possible complication after diversion surgery, based on my unlimited history of Murphy’s Law type luck, I just assumed it might happen. And it did.  I also assumed that DP couldn’t be nearly as bad as normal pouchitis.  Turns out, it’s worse.  When I woke up a few weeks ago to a significant amount of blood through my disconnected J-pouch, had my PTSD freak out, then sought treatment in the form of compounded Short Chain Fatty Acid and Rowasa enemas, I thought I’d be fine and respond in the same way regular pouchitis responded to antibiotics. Not so. Although the enemas provided some relief, I was still passing chunks of mucus and blood, getting increasingly nauseous, incredibly fatigued, and had bad pelvic pain.  I also noticed I’d lost some weight since the June surgery and when I weighed myself realized I’d lost 16 lbs. without trying.  So, I informed my doctor.  I had a scope to confirm the pouchitis and dilate a stricture so I could actually insert the medicine into my arse.  I kept waiting to feel better. I had blood work and a stool test done locally. All looked good.  I was in contact with my doctors, so I felt like I was doing everything right, except getting better.  After an intervention by two of my chronically ill BFFs, my husband, and my mother, I decided it was time to bring in the big guns and make a trip to Cleveland Clinic.  When some of the sickest people you know who also happen to love you dearly sit you down, tell you that you need to realize how sick you are and take better care of yourself, you take notice.  When all your supporters threaten to come physically take you to the ER if you don’t do something, you decide to get off your sick ass and make a decision. But the thing is, I felt like I was doing something. I was calling my doctors. I was getting scopes and ass-stretches.  I was getting blood work.  I was taking my meds. I was just too damn tired to do much else, and what else was there to do? Go to someone who knew how to treat my bionic ass.

When I got to Cleveland this week and had a scope in every digestive orifice, I found out the pouchitis, though getting better, was still active. My ostomy was too active and I was losing fluids and nutrients, so I’m taking Immodium and am on a diet plan to help me retain potassium.  I was also not eating enough or retaining enough protein.  I prefer to eat mainly veggies, so when I passed the recovery stage and could start eating veggies again, I guess I OD’d. The thing is, I was making a conscious effort to eat protein.  Evidently, all the fiber was making my output too frequent and hindering absorption.  My anti-inflammatory kale smoothies were a big fat fail.  What got hammered into my head this week was this: What’s healthy for most people is not healthy for me.  Because I have no colon.  Because I have a possessed J-pouch that though disconnected, is still trying to kill me.  Because I have a loop ileostomy and do not absorb nutrients the way I used to, or the way other people do.

I think what I struggle with most is accepting that I am sick and that as much as I want to fight against it and not let it affect my life, that’s not a very realistic plan.  People are always telling me to slow down or “don’t overdo,” but I feel like the majority of my life is spent at a doctor’s office or on my couch with my wiener dog.  I have big plans, shit to do and life to live and I don’t want to spend any more time than I have to watching re-runs of “Frasier” and “Seinfeld” no matter how hilarious they may be.  I want to get out in the world and make a difference and have adventures.  I want to work so that my amazing husband doesn’t have to support both of us. Even through doing that stuff may not be in my best interest physically, I simply can’t go on mentally if my life consists only of couch and channel surfing.  I need my experiences and my worth to be more than that.  I do try to take care of myself, but I’m not good at realizing how sick I am sometimes.  I’ve spent half of my life with a chronic illness with little respite-My perception of what it means to feel well is off, my pain receptors are off. Everything is just dulled because I’m used to it. That, I don’t know how to fix.  One of my biggest fears is being a complainer or being weak, so I just try to tough it out and deal with it until it becomes very obvious that I’m not doing well.  I’ve tried to change my lifestyle to accommodate my illness. I haven’t had a full-time job in 3 years.  I haven’t gone back to grad school yet, despite wanting to so badly.  I haven’t ridden a horse in 3 years because it hurts my pouch too much.  There are plenty of things I do not do, and I don’t want to add more to that list.  I want to put things back on my can-do list.  Chronic illness gives me more of a zest for life than I probably had previously because I know how precious those moments are, so you can be sure I’m going to take advantage of them.  I’m not going to be sorry for trying my damnedest to have a full life, even though it’s a struggle.

How do you guys deal with balancing chronic illness and life? Do you struggle with relationships with healthy people who expect you to do more and feel guilty when you can’t? Do you push yourself too hard to try to enjoy life despite your illness then end up paying for your day of fun? How do you get others to understand that going to a yoga class and a low-key game night is a big day for you and that even though you slept all day the following day to recover, you’re still wiped out?

While you’re mulling over that, let me tell you what I learned at my appointment:

Loop ileostomates need meat and little fiber. Even if you are a vegetarian and get protein from things like beans, beans may increase your output and hinder your absorption, so keep an eye on your output and slow your roll on the kale. Sorry, kale.

Loop ileostomates need lots of electrolytes and very little sugar.  Some patients are instructed to drink low-calorie G2 gatorade, but for some, it’s not terribly helpful, and you need a more potent solution like Pedalyte.

Loop ileostomates need lots of potassium because we lose it when we get dehydrated.  Eat bananas, potatoes, try tomato juice if it agrees with you, and drink your Pedalyte!

Don’t be afraid of Immodium.  I never took it because I was too afraid of a blockage.  (If you’ve had a blockage you are familiar with my paranoia.)  Pro tip: Being dehydrated sucks. It makes you weak, and messes with your memory and mental function.  Take the damn Immodium.

I’ll try to be better about forcing protein drinks down my throat and gagging down some meat even when I’d prefer a big salad or a kale smoothie.  I’ll also try to spend less time traveling, going to concerts, and trying to change the world, but no promises there :)

Day Two: Anti-Inflammatory Diet

by on Tuesday, September 17, 2013 16:05

File this entry under: Coping/Support

Got up and made the Kale Ginger Strawberry smoothie again. Still tastier than one would anticipate.  Made a water concoction of lemon, cayenne pepper, and fresh ginger-just let it steep in the fridge and infuse.  I strain it and drink the water cool or at room temperature.  It is also surprisingly good.  Ginger, of course, is good for digestive issues, and hot peppers are one of the best natural anti-inflammatories.

No miracle yet…

Went to acupuncture and that helped my joints some, but not completely.  Had appointment with local surgeon who attempted to scope my disconnected pouch, but the stricture was so tight he couldn’t get the scope into the pouch.  Cue pouchoscopy and dilation on Thursday.  My butthole will be so happy.

Working on locating a compounding pharmacy to mix up some Short Chain Fatty Acid enemas J-pouch Jesus prescribed.   Would like to try something else besides antibiotics since all the pouchitis-preferred ones give me gnarly side-effects.

Still crawling out of my funk, but feeling more like myself today.

Cheers,

Liz

 

Let’s Try This Again

by on Monday, September 16, 2013 12:03

File this entry under: Coping/Support

Kale vs Ninja

Well, kids, my wallowing has come to an abrupt end. I got bored of it and started researching alternatives-both to wallowing and healing.  I ate extremely healthfully before the last surgery, then rode the “low residue diet” train for a while.  Waking up pooping blood, finding the stricture is back, and having awful arthritis motivated me to start eating well again.  I’m trying an anti-inflammatory diet, which is essentially how I ate before surgery.  Basically, you eat whole foods as much as possible: things like fresh veggies and fruits, certain spices, little to no red meat, little to no processed foods like sugar, pasta, alcohol etc.  I’m fully aware that this may not help.  I have tried pretty much any alternative or herbal therapy recommended for IBD/auto-immune diseases, in addition to traditional Western medicine.  I think they work best when smooshed together, but no combination or exclusive use of any of the above has cured me.  I don’t hold out hope that it will, but at this point, I’m willing to try anything that might make me feel even just a little better.   Obviously, there are plenty of people who eat complete crap and have no health problems (yet), but it makes sense to me that the fresher the food, the more nutrient-packed, the better it is for you, so at this point I say, why not? I love fresh fruits and veggies-I grew up eating it, which again, makes me think these efforts may be terribly futile, but, what have I got to lose?

I’ll let you know if I see any improvements and will share any recipes I deem yummy.

First concoction: Kale Smoothie with fresh strawberries, ginger root, lemon juice, orange juice, and parsley.  It’s surprisingly good.

Bloody Shit.

by on Saturday, September 14, 2013 15:05

File this entry under: Coping/Support

No, I’m not British.  I’m an angry American girl who woke up at 5am and shit blood out her butt despite having an ostomy that’s supposed to be doing my shitting for me.  I’ve been shitting blood for half my life.  Let’s re-cap:

At age 15, I got violently ill one night, shaking and having uncontrollable blood + mucus diarrhea with a side of projectile vomiting.

A year later, at age 16, while making a scrapbook for my grandfather for Father’s Day, I got up to use the bathroom in our basement and stood up to notice blood running down my leg.  After getting a diagnosis of Ulcerative Colitis and refusing a recommended immediate total colectemy, I spent the remainder of high school on high-doses of steroids and “maintenance” drugs that were supposed to keep me in remission.  Problem was, I never went into remission. Even after ballooning up from Prednisone, having worsening acne, sweats, moonface, hair growth, and insomnia, my poop was still coated in blood. There was always blood.  For 6 years, every time I went to the bathroom there was blood. It didn’t matter how much medicine I took, new drugs, old drugs, none of them got me into remission.   They made things semi-manageable until I was a Junior in college, then my shit had turned exclusively to blood, and lots of it.  I’d shit bowl-fulls 30 times a day.  I didn’t eat, I drank Gatorade, I writhed around in the bathroom floor of my college apartment praying for death or a miracle.  After a one month remission, I decided it was time for the surgery I’d put off for so long.  I opted for a J-pouch and felt better after my total colectemy in 2005.  However, if you read my earlier blog posts, you know my pouch failed and I had 7 more surgeries to try to fix it, or deal with a fistula.

The last surgery was nearly 4 months ago now. June 18.  I had a loop ileostomy to divert stool from my J-pouch, to give it a break and give my body time to heal.  My recovery officially ended at the end of August, so today marks 2 weeks that I’ve been out of recovery.  My recent blog posts have bragged about my ostomy and how much better I’ve felt.  I’ve said I’ll stick with this disconnected pouch and let it hang out in there as long as I can avoid diversion pouchitis.  The problem with this loop ileostomy is that it has two openings. A distal and a proximal, which means that unlike an end ileostomy, stool can still go through the pouch from time to time, which means that I get to poop from my ostomy and my anus.  I’ve had mucus from my anus pretty much since the surgery. That was “normal” and to be expected.  However, last week, I noticed some blood when I pooped, and this morning there was significantly more.  Something about seeing blood-covered toilet paper accompanied by blood in the toilet bowl sends me into a state of PTSD-like shock.  When I saw the blood on the toilet paper this morning, I froze.  My mind shut off and my body was on automatic pilot.  I flushed, washed my hands, went downstairs and stared at the wall for a solid 5 minutes before thoughts entered my mind again and tears welled up in my eyes.  My first thought was, “How is this still happening, after all this time, after all these surgeries, after all the drugs and everything I’ve been through. How is this seriously happening again?”  That lead into, “This is never going to end. No matter what I do, no matter how many surgeries I have, what, or how many drugs I take, I am always going to be sick.  My body is always going to remind me, each time I think I’ve gotten ahead of this disease, that I haven’t.”  More tears came, then Rob came downstairs because he heard me crying.  He held me tight as I sobbed so hard I started hyperventilating.  Through frustrated realizations voiced aloud, I voiced how fucked I felt.  How tired I was.  How no matter what I do, when I think I’m in the clear, bam. The blood is back.  After I calmed down enough, I emailed Dr. Shen to tell him there’d been more blood, “What do I do?” I’m going to try short chain fatty acid enemas, cause you know, despite having an ostomy, my stupid J-pouch is still in need of medical treatment.

So, two weeks. Awesome. I guess I felt okay during the recovery, so that’s something, but still. It would be NICE to have, oh, I dunno, a fucking YEAR to feel well before the shoe dropped.  TWO WEEKS out of recovery, my body rebels.  Par for the course.

I know you guys aren’t used to hearing this side of me.  This is the dark, pissed-off Liz I try to suppress with yoga, prayer, meditation, and probably denial.  But I also cling to hope until this happens, then I have a day or two of being angry and destructive and I get it out by use of creative outlets like writing, so thank you for bearing with me and being a part of my recovery into sanity.

The thing that frustrates me the most is that I feel like no matter what I do, no matter how much control I think I have, I really have none.  This is part of life with a chronic illness.  Cut the offending organ out, it will attack what you have left. So, then, what do I do? I would still love to be a productive member of society.  I would love to have a job, to possibly have kids one day, to go back to graduate school.  I would love to stop getting knocked down every time I get up, make plans, and try to go on with life.  I’m really really tired. 15 years is a long time to force yourself to be resilient, motivated, strong, ambitious.  But, part of who I am is a fighter.  So, I’m not going to stop.  I’m not going to give up.  I’m going to be angry for a while, and feel sorry for my shitty situation, but I’m going to keep doing the work I do with Girls with Guts. I’m going to try to help others in the same shitty situation by sharing what I’ve learned.  I’m going to try to inspire hope and positivity even when I feel like I don’t have any left.

It’s invisible illness week, by the way.  I don’t usually do posts at this time because I feel like it’s covered enough by others, but mostly, because I only write when I’m inspired to.  The Great Bowel movement did an excellent blog post this week about what it’s really like to live with IBD and it was one of the best summaries I’ve read on the subject, so I encourage you to read it.

Life with an autoimmune disease is like the shittiest roller coaster ride you can be on.  It beats you down mentally and physically, it fucks your mind because just when you think you’re in the clear, that you’re regaining some control, the other damn shoe drops.  I told Rob, “Just when I’m planning to reschedule the GRE exam I was supposed to take in March that got delayed because of fistula surgery, just when I get the inkling that I might be in the clear, my stupid bowels remind me that they are in control, not me.  It’s exhausting.  It’s infuriating.  And it makes me feel hopeless despite trying so hard to be hopeful.

So, now what do I do? I should mention that I DO NOT want to have another surgery. I’m 30 years old and I’ve had 10 surgeries related to IBD.  What do surgeries do? I guess they buy me time? This one bought me two weeks. So, what do I do now that I’m sick again? Do I proceed with the J-pouch redo, fly back up to Cleveland, spend more of our savings on hotels and flights, have relatives come stay with me so Rob can go back to work, spend more time away from him and my dog.  Then do it all again a few months later to have the takedown? OR do I get the pouch amputated, get my rectum and anus removed, sewn up, and say sayonara once and for all to more intestinal surgeries? Except, that’s not really fair either.  The few people I know who have opted for the later route still have problems, so it’s not a guaranteed solution, you know why? Because there aren’t any.  There are no guarantees, just things that buy you time, and right now, when I feel like I need to act, need to respond to my body telling me, “I’m sick again,” I have no idea how to fix it, because I don’t think I can.

So, I have more thinking to do, more decisions to make.  I will be calling my therapist first thing Monday to get back on that train because I have to.  I need some third party to help me decide and to help me through this.  My poor family and friends have endured enough of this, and they will continue to. It’s not fair to them either and I feel as sorry for them as I do for myself.  It has to be so hard to watch your daughter, wife, niece, BFF suffer like this for so long.

Again, I really apologize for being a downer today.  Don’t worry, I’m not giving up, as I said before.  I’ll schedule the GRE. I’ll still go to grad school, God-willing to help others in my situation.  I’ll do what I have to do to survive because that’s who I am.  I’ll get back my sunny disposition, I’ll be happy, I’ll be strong, but just for today, I need to be human and be sad and feel slightly cursed.

Thanks so much for listening guys.  I really love this community and I’m so glad we can commiserate and support one another.  

Ask Me About My Shitbag

by on Friday, September 6, 2013 21:46

File this entry under: Coping/Support

Before we get started here, let me offer a disclaimer. I affectionately refer to my ileostomy bag as a, “shit bag.”  My stoma is named STELLAAAAA,

but if you read this blog, you  know I have an affliction called writer’s potty-mouth and thus, “shit bag” is my term-of-endearment-of-choice.

“Pardon me, Madame, how doth your shitbag do?”

Shitbag Etiquette: If you have an ostomy, you can call a shitbag a shitbag, OR if you are sans ostomy and use the term in a positive way, you may also call a shitbag a shitbag, but if you use it in a mean-spirited way, well…then we have a problem don’t we? Luckily, all our readers are AWE-some and I just used that last bit to say, “shitbag” a lot.  Now that we have that out of the way, let’s proceed with the post :)

So far, Stella has been wunderbar.  We had some minor issues as she was healing from this summer’s surgery, but now we’re getting along swimmingly. Speaking of which, check out my sweet Vanilla Blush bikini!

Rockin’ VB in Big D.

 Things have been busy with Girls with Guts.  We’re preparing for our first Retreat at the end of the month.  Last month, we were in Jacksonville, FL for the United Ostomy Associations of America (UOAA) conference, where we exhibited, met lots of awesome ostomates, and led a couple of sessions.  

Girls with Guts Team

Shortly after that, hubbs and I headed to Portland to celebrate a friend’s nuptials, eat delicious food, and enjoy Oregon wine country.  One of my BFF’s, who also refers to my ostomy as a shitbag, was very inquisitive about it, as this was her first in-person experience with mine.  Which brings me to the inspiration for this post. EVERYONE and their mom asks me about my ostomy.  Not because they can see it; they can’t. I strut around in tight pants and dresses with nary a bulge. If anyone knows about Stella, it’s because I can’t stop talking about her! Side Note: If you haven’t checked out The Great Bowel Movement‘s “Ask Me About My…” awareness gear, you totally should.

My friend wanted to know what the bag looked like, how it worked, how I emptied it.  I gave her a demo during a bathroom break at the reception.  This was all met with utter fascination, not repulsion, mind you.  But, I don’t really expect repulsion when I show off Stella.  She’s the bee’s knees.  Another friend, who happens to be my waxer, gets to see Stella from time to time and she often reminds me after I flip the bag out of her work space, “You don’t have to hide it! Your poop bag doesn’t bother me!” Tonight she wondered, “How does that work anyway?” She didn’t get a full demo, but a mild tutorial.

These interactions make me realize a few things: 1. I have wonderful, supportive people in my life. 2. TMI? Nah.  3. Shitbags are awesome. 4. Curiosity and eagerness to learn something new almost always outweigh a negative association.   Maybe it’s the way I present myself, but my theory is, if you present your shitbag without shame and with a good sense of humor, people aren’t going to say, “EW, gross,” and walk away.  They’re going to be genuinely interested, because, when you think about it…It’s pretty amazing.  We’re walking, talking, pooping medical wonders who have fought like hell to survive.  I refuse to be ashamed of my strength and anything that’s helped me flourish. 

Girls with Guts Leading Session about Dating and Intimacy

Like most things in life, IBD, internal pouches, farts, ostomies, are all just a matter of perspective.  Most people think my ostomy is fascinating and pretty nifty because it makes me feel better.   If someone can’t see beyond that, chances are, they don’t have great perspective, and thus, seem quite boring. I don’t do boring.  You probably shouldn’t either.

So go forth and tell the world about your IBD, J-pouch, or ostomy! Note that this doesn’t mean IBD, et al becomes your identity, but taking an opportunity to educate and advocate is a wonderful way to help others suffering with IBD. Having someone understand, just a little bit, of what we have been through and go through, somehow makes this journey a little easier.  If we all paid it forward and lived without fear and shame, think how much better the world might be.

Rock Out With Your Pouch Out

by on Tuesday, July 9, 2013 22:15

File this entry under: Coping/Support

So, I had my surgery to create a loop ileostomy to divert stool from my bratty J-pouch!  Pre-op went down Monday, along with some exciting Girls with Guts (GWG) goodness

Alicia & Liz at Cleveland Clinic

that evening. (Top secret!)  Hubbs accompanied me and we met up with my mom, along with some IBD buddies for aforementioned GWG goodness.   I knew I had a sinus infection brewing, so mentioned this during my pre-op exam with internal medicine.  He rx’d Augmentin, my go-to sinusitis drug.  This was not a significant enough reason to postpone the surgery, thank goodness, as we’d traveled a long way to Cleveland and I had long since made my peace with the decision to give the J-pouch a break or redo it all together.  This surgery has been a long time coming.  I’ve had non-stop problems with the pouch, pretty much since its creation.  Getting my colon removed in 2005 was a no-brainer, and a good decision since my surgeon said the lining was completely stripped out.  As a 21 year old college junior who spent her days in excruciating pain, pooping bowl fulls of blood, sleeping in the bathroom floor, and praying for relief or death, it wasn’t much of a life.  I couldn’t eat. I couldn’t swallow my medications because I’d vomit them up.  I had taken multiple medical leaves from school, which was frustrating to a highly-motivated Dean’s List student.  When I’d failed a version of every IBD drug or herbal remedy available at the time and was unable to participate in new drug trails because I couldn’t keep the pills down, I knew it was time to submit to the surgery I’d resisted since my diagnosis of severe ulcerative colitis at age 16.  When I found and met with a surgeon I liked, the options were clearly laid out for me.  The “gold standard” was an end ileostomy, which would leave me with an external bag to catch my feces.  21 year old Liz was okay with this, but thought, “if there’s an option for an internal pouch, I’ll opt for that.” So I did.  I had a three-step surgery because I was steroid-dependent and still very ill.  I felt great after the first surgery to remove my colon.  I waited the suggested six months for the J-pouch creation surgery, but had serious doubts about proceeding with it.  I felt so great, so what if I had a bag?  Why risk another surgery?  Well, the statistics were in my favor.  Most of the complications were in the 5% and I thought, “No way will that be me!” My surgeon was first-rate, did an average of 150 of these procedures a year.  I felt like I’d made a well-informed decision.  The second surgery included the creation of the J-pouch and a loop-ileostomy.  I had a difficult recovery from that surgery. I lost a lot of weight and moved in with my mother for several months because I wasn’t able to care for myself on my own.  I also had a hard time with the loop ileostomy because I had a high output, which caused dehydration and leakage issues.  The connection or “takedown” surgery was a breeze compared to the last and I spent the next few months adapting to what I thought was a first-rate pouch.  When I went in for my 6 month check-up, my surgeon found a stricture at the anastamosis site that would not go away despite office dilations and multiple surgical balloon dilations.  He seemed shocked that I hadn’t noticed it because it was severe, but I felt so much better than I had with the colon, plus, how was I to know how a J-pouch should function?  After that, it prolapsed (ie came OUT of my “hole”).  Then the pouch twisted, two separate times.  The first requiring emergency surgery to untwist it, and later, surgery to untwist it and tack it in place.  After the pouchopexy surgery, I thought, “Surely this is it.” Nope! Of course I had pouchitis, later a Crohn’s diagnosis, then a rare complication from a Crohn’s drug.  Immediately after the takedown, I had severe lower back pain, localized at the top of my pelvis.  It was a dull, aching, radiant pain that never went away, but occasionally worsened.  My doctors had no idea why that was happening, but did note that my pouch was “bigger than most” probably because it stretched when I was unable to empty fully because of the stricture.  The low back and pelvic pain was so constant that I eventually got used to it and just thought of it as something I had to deal with.  When we moved to Oregon and new surgeons and GIs evaluated my case, I got slightly closer to an answer, but most blamed my problems on Crohn’s, put me on more meds or referred me to another doctor.  I saw a pelvic floor therapist who massaged my anus, inside and out. I took muscle relaxers to try to help the pelvic floor muscles relax so I could empty the pouch. I had a defography where I ingested barium orally, anally, and vaginally then pooped it out while being X-rayed.  (Surprise, it didn’t empty properly.) Eventually, I got to Dr. Shen at Cleveland Clinic

Liz & Dr. Shen

who ran some very specialized tests and within two days had diagnosed me with efferent limb syndrome (the rectal stump goes at a diagonal vs. vertical causing problems emptying). I also had a chronic stricture at the connection site, my pouch was not symmetrical, and my anal muscles had been re-trained to never relax.  He offered simple, safe solutions and got me off most of my meds, although I took Entocort for the IGG4 autoimmune pouchititis I was diagnosed with.  The next three years were a marked improvement, but he always honestly told me that because my pouch had mechanical issues, it may require a re-do by one of their surgeons.  When I had the fistula scare earlier this year, felt absolutely terrible, ended up in the ER, was swollen and looked 5 months pregnant, I thought the fistula was to blame for my worsening symptoms.  When I had the exam under anesthesia (EUA) with Dr. Remzi, my mind was blown when he told me the issues were due to my poor pouch function.  I guess 8 years of never pooping properly had finally caught up with me.  I also felt so much better after the prep and tests for that exam (see epic barium enema post) that it finally clicked that my pouch never was empty and that my pelvic pain and swelling were due to that.  After months of contemplation-including weekly therapy sessions, prayer, polling of friends and family, and meditation, I decided to schedule the loop ileostomy surgery to give my pelvis, as Dr. Remzi said, “A chance to cool off.”  I was nervous about the surgery for a number of reasons. 1. It’s another freaking surgery! How many of these have I had? 2. I remembered my hate/hate relationship with my former loop ileostomy and was hesitant to get back together 3. What if something went wrong again? Could I take that mentally and physically after all I’d been through? If you read my last post, you know I decided to woman-up and try again.  I decided it’s never okay to give up when you have so much good work to do and life to live, so I told myself, the universe, God, that I’d try one more time, but I made clear that I needed this to work.  I put all the positive energy I had towards it.  I enlisted the good vibes and prayers of my community, family, and friends, and I felt the love!  I had the surgery Tuesday, was released Friday, and am enjoying the distinct lack of pelvic pain.  

Liz & wonderful Hubbs.

I’m loving my ostomy and if I can avoid diversion pouchitis, will probably keep Stella (my new stoma) for as long as possible.  I’m so thankful for the ability to keep going-for the support of all of you, and I encourage you to pay attention to your body and seek answers when something feels wrong.  Years of dealing with chronic illness and the constant pain that accompanies it can skew your perspective and dull your instincts.   We can adopt a mantra of, “this is just how it is for me,” because it seems like part of accepting our illness.  I encourage you to keep seeking answers-to seek the counsel of the best physicians you can find-to try alternative therapies like yoga, acupuncture, as long as you do it as a fully-informed patient.  I have never stopped researching, but I almost stopped fighting.  There’s no guarantee that this surgery will last forever or that I’ll be free of complications, but I can take solace in knowing that right now, I feel better, and I feel better because I didn’t give up on myself, or on the promise of improvement.  

Frustrating Decisions…And Not Giving Up

by on Thursday, May 23, 2013 13:42

File this entry under: Coping/Support

Hi, guys. I’ve officially scheduled the first of three surgeries to re-vamp my J-pouch.  The first is a loop ileostomy that we hope will give my innards time to cool off and chill the hell out.  Not gonna lie, I had myself all amped up for two surgeries after the exam under anesthesia (EUA).  When I found out it was actually three, I had a pretty major Lizzy hissy fit.  When I confessed this to my therapist, she asked, “So what does a hissy fit look like for you?” I thought about it and replied, “Well, I was mad. I was just…pissed.  I don’t know why three seemed so much worse, but it did. It felt like another nail in the coffin.  So I got really pessimistic about the whole thing, which is not normally how I operate. I kind of thought, ‘Fuck it all, I’m screwed no matter what I do, nothing has ever worked for me, why would it magically change now?’ I vented to Rob and many friends. I threw my hands up, pouted and said, ‘I’m not doing it! I can’t put myself through this crap again. I’m done. I’m sick-this is what’s meant for me. I should just stop trying and let whatever this is take me over and give up already. I’m too tired to do this again.’ I screamed. I yelled. I was alone (except for my dog, who should by now, be used to these occasional outbursts and possibly think I’m insane). I was angry about all this disease and surgical complications have taken away from me, despite my general sunny attitude about them. I was mad about not being able to physically do yoga for two months because my abdomen hurt so badly, was swollen, and I was too fatigued and doped-up on pain pills to do much. Walking was hard enough, downward dog was not happening.  I was frustrated because yoga is the main thing my Type-A ass can depend on for calming, sure-thing feel-good results.  I felt a great deal better after the EUA and was able to go back to my practice-I just modified it a lot.  Realizing that I’d spend the next year and a half getting cut open, guts re-wired, healing, wash, rinse, repeat, and having little time between recovery to do anything else but prep for the next surgery was just more than I could bear.  A few weeks ago I was about to take the GRE, start graduate school and FINALLY move on with my life.  Stupid IBD/Pouch problems were there to thwart me again, and I almost decided to let them win.”

After my hissy fit was over (it lasted a little over an hour, FYI), I got my crap together and started praying again.  I prayed for an answer I didn’t have. I had to decide this. Doctors could make recommendations and lead me in what they felt was the right direction, and although I had guidance from two physicians I trusted, the final decision had to be mine. At that moment, for lack of a better pun, I didn’t have a gut feeling at all-I had frustration and a “why me?” attitude.  I had been meditating more during my respite from yoga-something my favorite teacher suggested, but it felt like the next best thing to a full asana practice.  When the opportunity to meditate with monks from a Tibetan Monastery arrived, I felt the universe at work again, I jumped on the chance and went.  It was a truly humbling and awesome experience to sit in a room with these men, who have devoted their lives to their spiritual practice-to spreading peace and compassion, and share in a part of their daily routine.  A much-needed scroll boasting a quote from the Dalai Lama told me just what I needed: To never give up.  So, after that divine intervention, hope started to find its way back into my psyche.  I decided trying again is always better than giving up.  I can’t lie, I am tired. My body is getting fed-up with all of this, and certainly, so is my mind.  I do try to take good care of myself. I seize the day when I’m feeling spunky, and I’ve had a lot of adventures in my life.  The thing is, I want so many more. There is so much I want to do. So much I feel I need to do-for myself and for others.  The frustration of finally realizing that, starting down the path, and getting knocked in the dirt again was just infuriating and very disheartening. But, I have a strong heart. I am resilient, and I’ll be damned if I’m going to let this physical disease disrupt my plans and squelch my spirit.  I try to always remind myself that I have a choice.  This disease continues to test me, and it probably always will.  Giving up seems easier sometimes, but it also seems boring.  I just keep thinking about how sweet my success will be and how amazing it will be if this surgery works.  It’s one those scenarios where you have to prepare for the worst and hope for the best.  I’m hesitant to be too optimistic, but too stubborn to give up.  Thank you all for your words of support and encouragement.  This community, my friends, and family keep me going, and of course my faith.  I’ll be sure and keep you posted as this adventure unfurls. Be sure and send me lots of love and yummy J-pouch vibes.

 

Post-Op/Pre-Op Op Ed

by on Tuesday, April 2, 2013 8:16

File this entry under: Coping/Support

Post Epic Poo

Guys, it’s been a crazy few months. For a while I was seriously starting to doubt the universe and its plan for me.  Things have been “not right” since December, and got noticeably worse by February. Cue MRI, CT, ER visits re: fistula. By March, it was clear I had to move up my exam under anesthesia (EUA) with Dr. Remzi at Cleveland Clinic.  Travel arrangements were made and I went up with my mom for pre-op appointments on March 20 and the EUA on March 21. My first appointment on the 20th was a barium vaginal x-ray (complete with barium vaginal goo) to try to locate the fistula. After getting pumped full of this stuff, being on my period and it leaking out all over the x-ray table and on me, I got cleaned up, flipped over, and did the other end. The enema test didn’t clearly reveal a fistula, rather a bulge at the connection/stricture site. The post-enema poo was just…EPIC. I don’t know if my pouch has ever been empty before. OMG. I was relieved but exhausted. I drank about a gallon of fluids to regain clarity and headed for the lab to get blood work. After that, I saw Dr. Remzi’s NP, Vicki, and Dr. Shen sat in on that appointment. We discussed surgical options, non-surgical options, IBD treatment, etc. When I got to the EUA the next day, I was more anxious that I’d let on. I hadn’t been sleeping much since I found out about the fistula-maybe two hours a night. I was also excited to have a great distraction in my new position as Development Director at Girls with Guts (GWG). After getting recently fired, it was a savior to me mentally to have something to do that I was passionate about and also really good at! So, I kept my brain occupied with exciting/positive things for GWG, and tried to be patient with my own health. When I got to Cleveland and heard every physician I saw say how much they “hate” fistulas, I got kinda nervous…

I cried a lot that week. I think I was exhausted and overwhelmed, and it was truly cathartic. When they wheeled me back to the OR, I just thought, “How is this happening to me again? How am I doing this and not completely falling apart?” I prayed, I took deep breaths, I joked around with the nurses and the team of doctors. I made BFF’s with the anesthesiologist all the while wondering when I was going to get my freaking anti anxiety meds!!! They juiced me up right before Dr. Remzi came in. I dunno if it was the drugs, but his voice sounded incredibly deep as I looked up to him with hopeful eyes and he explained what he would do while patting me and saying, “I will take good care of you.” When I woke up, I pestered the nurses and staff for information about what was discovered. Knowing I’d remember only portions of the answers, I requested pen and paper to record all of my inquiries/answers and before I knew it had 5 pages full! Mom and I went back to the hotel, I slept, had dinner, slept some more. I’m happy to report I’ve been sleeping well since the surgery.

Pre-Op

So what happened? No one got a visual on that sneaky fistula, which is good? But they still can’t rule it out based on my symptoms of air and off-colored discharge.  Dr. Remzi said what I already knew-that my pouch was not properly constructed. Dr. Shen told me this back in 2010 when I first went to see him, but with the help of his “bag of tricks” I was able to postpone a reconstruction for three years. I was the healthiest I’d felt in years. Although I was SURE I was having a flare when this all started up in December/January of this year, the EUA proved otherwise. My IGG4/Crohn’s was in remission, it was my pouch causing all that pain, swelling, and nausea. That really hit home for me and made me realize that I have to get this sucker repaired. That’s not to say I’m looking forward to the two surgeries required to reconstruct it. I’m not. I am not excited to devote a year of my life to surgeries again. I’m not excited to have a year for my pouch to adapt again. I am kind of weirdly excited to have an ostomy again because I can get some fab Vanilla Blush goodies. The thing I’m wrestling with the most is, do I try the J-pouch again? Do I get it fixed, have a temp loop ileo for 6 months, then have takedown? Remzi has an 85% success rate with this surgery, but let’s remember how I’ve been in the 0.6% before…Still, is it worth a shot?  The other option is just to scrap the whole thing, get a permanent ostomy, and get rectum and anus removed. I have friends who have opted for this route, but both of them still have some problems. If I could just go back to an ostomy knowing it would fix all of my problems, I’d do it in a heartbeat, but as with all things, there’s no guarantee. I have no problems having an ostomy. When I had the colectemy and the end ileo when I was 22 or so, I had major doubts about proceeding with the rest of the surgeries because my quality of life was so much better. I’m happy with myself; an ostomy doesn’t change that.  The only issue with going directly to the permanent ostomy and having rectum, et al removed, is that there’s no going back from that. In an effort to not “burn any bridges” my gut is telling me to try for the reconstruction. Still, I’m tired. I’ll be 30 in less than a week, and that marks 15 years with IBD.  It’s been basically non-stop with disease activity/surgeries since diagnosis. Is 85% good enough to put myself through more surgeries?

Again, I don’t have MUCH of a choice. Of course, I always have choices-how to react, which surgery to do, but whether or not do so SOMETHING, isn’t really an option now that I’ve seen how poorly this sucker works. I can’t go on living on pain pills looking 5 months pregnant because I can’t poop. I want to live my life. I want to give myself a chance, and I guess 85% is pretty good.

So, what do you guys think I should do? Try for the reconstruction or say sayonara to this thing once and for all? No guarantees with either, but one option presents one less bridge to burn.

Update: Guys. It’s THREE surgeries. Not two. :( First is to give me diversion or  ”loop” ileostomy. Second is reconstruct pouch. Third is takedown. BLAH! I’m grumpy now.