Something Bit Me in the Chihuahuan Desert, and It Wasn’t a Chihuahua

by on Monday, April 9, 2012 13:13

File this entry under: Coping/Support

No chihuahuas were harmed in the posting of this blog.

Hello fellow colonless travelers! (Really, does that “colonless” greeting ever get old?)

I have returned from Marfa, TX, the promised land!  Actually, it’s more like eccentric-artsy-fartsy- hippies-in-the-desert- in-the-best-possible-sense-land.  If you are an art nerd, like me, you may have heard of Marfa, best known for the instillations and work of Donald Judd (let me google that for you: http://en.wikipedia.org/wiki/Donald_Judd) who Marfa-ed in the 70s.  Its other claim-to-fame:  the filming location of the Liz Taylor/James Dean movie Giant.

You are here, in the Middle of Fucking Nowhere!

After driving eight freaking hours from Dallas, we arrived in this bizarro little town peppered with Border Patrol stations and surprisingly upscale restaurants.  All the tourists come to see the Marfa Lights, an atmospheric phenomenon (or aliens).  The car ride was great and didn’t seem that long.  We took ample bathroom breaks, stopped for rockin’ West Texas BBQ, and enjoyed the gorgeous wildflowers as the landscape changed from concrete to hills, to dust, cacti, and old-ass oil well drills.  Surreal, to say the least.

The trip was going swimmingly, despite the creepy late night trips to the bathroom.  This is a consequence of colonless camping in the desert, or bowel-troubled camping at all.   Still, doesn’t stop me!  Anywho, hubbs and I were snuggled up in our tiny tent when we heard this crazy chirping sound in the middle of the night.   Of course, given Marfa’s extra-terrestrial hype, I blamed every strange occurrence on aliens!  “Weird midnight chirping? ALIENS!”  Atmospheric phenomenon, my ass. 😉  So, I unzip the damn tent, stumble out careful to check first for scorpions or any other alien traps, and trot groggily to the bathroom.  I look up to see what in the hell is making the chirping nose and it’s THE BIGGEST FUCKING BAT I’VE EVER SEEN!  You guys, I’m not joking. In my sleepy stupor I looked up, squinted, and thought, “What is that hawk doing up there at night? Why is it that creepy pale yellow color? Why is it chirping?  This doesn’t make sense…Holy shit, that’s a bat…”  Needless to say, the shat came out easy that trip.

The next day was my birthday! Also, Easter. I love when my b-day’s on Easter.  So, I celebrated by doing my own mini prayer/meditation and yoga-session mid-day and it was so loverly.  I relaxed in the “hotel’s” hammock grove afterwards, and when I got up I felt this crazy intense burning/stinging pain in my wrist.  I inspected the area and pulled out something… A tiny, and I mean TINY yellow bulb with a stinger attached to it.   Then the burning got worse, and worse…and red, and swollen.  The locals who took a look at it said instantly, “Spider bite.”  Which was not really what I wanted to hear since the only two spiders I heard mentioned were Black Widows and Brown Recluses.  Luckily, years of body fuck-ups prepared me to stay calm and deal.  Which is what I did and I’m so proud of myself!  It’s pretty amazing to remain rational when some mystery desert critter has taken a bite outta you.  I felt a little weird, muscles got crampy and felt a smidge pukey, but I was prepared with antihistamines, and did I mention they sold champagne there?

Anyway, I’m back in concrete civilization with doctors, hospitals, and pharmacies and have an antibiotic rx for this puncture wound on my wrist.  I just hope it doesn’t wipe out any super powers I should receive from alien spider bites.

So the moral? Marfa is awesome.  Life is scary and sometimes painful, but that shit ain’t got nuthin’ on IBD!  Also, we discussed that if the aliens were to come and take anyone for examination, it would have def. been me, because I had the most interesting insides. Aw 😀

Oh, and we DID see a Marfa Light.  It was red, big, asymmetrical, and flashy.  Kinda what I imagine the aurora borealis would look like if it had no colon.

UpdateLevel II Bark Scorpion Sting.  Not Alien Spider. That sounds like a  bad ass video game, huh? Dr. Rx’d Prednisone for inflammation and potential lupus flare caused by poison in my blood.  Also, Phenergan for the nausea and diarrhea cha cha cha.  So, suck it, scorpion.  I live to shit another day!

I Have Crohn’s Disease, and I Have to Poop.

by on Wednesday, March 7, 2012 7:03

File this entry under: Coping/Support

So, friends without large bowels, how are you? What’s new? How’s the plumbing working? Mine’s been so-so lately. I feel like I’ve been on the verge of a pouchitis/Crohn’s flare.  It’s not bad enough yet that I have succumbed to my emergency meds.  I know I need to, but I’m stubborn like that.  I’ve pressed on, living my life, but I’m tired and my tummy hurts.  I’m also pooping more than normal.  It’s that standard pouchitisy thing  where you are all, “OMG, I gotta go. Real bad. NOW! MOVE!” Then you take a seat and disappointment sets in. Once again, guts aren’t cooperating.  You can muster up something, but not what your guts and mind had envisioned pre-run.

Your next logical question is, “Why is there am amusing drawing of Thom Yorke (lead of Radiohead) dancing over there? What on earth has this to do with Liz’s bowels?”  Here’s your answer:  Couple nights ago my hubbs and a group of friends went to see them.  It was a great show, and for me, the highlight was watching their front man shake his grove thang.  He has some sweet moves.  How does this tie into a relevant jpouch.org blog post? Here ya go:  I have to shit. A lot.  Especially at long events.  Something about the standing around, drinking water to stay hydrated means I gotta go a lot.  Maybe I notice this because I’m older, or because I moved from uber kind hippie NW to impatient, get-the-fuck-out of my way-Dallas, TX…but probably both.  We got there early. Really early to reserve a good spot.  Since I have to poo a lot, I was the sacrificial lamb to bring back drinks, you know, “On your way back from the bathroom.”  I went probably three times before the actual concert started.  I was polite and even explained why I was causing the very minor inconvenience of asking someone to “Excuse me.”  “Sorry, sorry, excuse me, going to the bathroom….sorry, pardon me…bathroom.”  One woman was so rude to me when I said that.  I won’t repeat what she said, but her anger really confused me.  I have no idea why asking people to move during a show of any kind (esp. when nothing is happening-no band was playing yet-I call this my pre-emptive poo…) is so infuriating to people.  As a good Chronie, I found a friendly security guard to give me the layout of the place (ie, nearest bathroom), explained my predicament, and got a kind response. Why can’t the general populous do the same? I understand that some people are rude, easily annoyed, and just plain mean, but as a person with a legitimate reason to go to the bathroom, I was kind of offended by the rudeness of the crowd.  I decided, for any future big event I’m just going to wear a shirt that says, “Excuse me, but I have Crohn’s Disease and I have to Poop. Thanks.” I also realized that it’s probably time for me to take advantage of this whole “disabled” thing when I need to, and I realized that at things like that, I need to.  So, I think from now on, instead of making myself (and apparently others) miserable, I’m gonna hang out in the easily bathroom accessible handicapped section.

What do you guys do in situations like this? This question applies both to dealing with bathrooms at large events and the subsequent annoyance of those around you.  I kinda wanted to say to the lady, “Actually, I have an incurable disease that took away my childhood, some organs, and still makes me have to shit all the time, but thanks for being a bitch about it.”  Instead, I took pity on her bad attitude and gave her a genuine smile as I walked away towards my original intent: finding the toilet.

The moral here: Our trials have made us kinder, wiser, more patient people, especially when dealing with rude assholes, but I have a much shorter fuse when I don’t feel well (like now) and wonder if any of you have really let someone have it before. Do tell…

I should also say that I am proud of myself for taking the high road and doing the yogic thing of being kind in the face of outright ignorance and that I hope all of us do the same. However, the situation at the concert brings out the advocate in me, and I’m still fired up.  The next logical step is to solve the problem, which I think I’ve done with my new plan of “hanging out handicapped,” but my overall frustration is still that I couldn’t simply say to the woman, “I have Crohn’s disease” and be done with it.   I’m also frustrated by the lack of kindness in our world right now.  I shouldn’t have to explain anything, the woman should never have been that rude to me.  Obviously, I feel sorry for her, much more so than myself, and maybe that’s the lesson? Maybe there is no lesson, but damnit, I want one!  Either way, it motivated me enough to post about it and maybe try to work with venues to make things more accessible.  If you have any theories, let ‘um fly. And thanks for reading :) Now, go do the Thom Yorke.

Loss & Gain

by on Thursday, December 29, 2011 14:09

File this entry under: Coping/Support

This is something I haven’t discussed on the blog-I always try to keep it strictly IBD and health-related, but sometimes themes overlap. This year, I’ve lost a lot of people. A lot. The most devastating to me was the loss of my Papaw-the main male figure in my life. The man who taught me how to tie my shoes, taught me the importance of patience, and how to live gracefully with a disability. I lost my Uncle Russ, a spitfire, gypsy spirit like me. I dealt with the cancer diagnosis of my favorite aunt, I saw her lose her beautiful hair and part of her breast, and I saw her survive all of it. I saw my uncle-in-law pass, a humble, kind man who went too soon and I saw his lovely wife continue her life with strength and grace.
The year has been peppered with this, in some way or another, and I’m sure it’s been similar for many of you. Maybe your loss is more direct-maybe you lost your colon. Maybe you lost a relationship or a job because of your surgery or illness. Last night, my cousin lost her dear uncle-in-law. He had a J-pouch, like me. He had Crohn’s disease like me. He lived in Texas, like me. He was in his 40’s and developed terminal intestinal cancer from Crohn’s. I post this not to discourage you, but to tell you that despite all the loss this year, I feel maybe more at peace than I ever have. No, I’m not glad for the loss, or the suffering that likely accompanied all of this, but it reflects an inner strength and peace that we all can conjure when we need it most. I tell you this with the hopes that you focus on the amazing blessings in your life, despite the lack-of-health cards dealt to you. When I think of Uncle Ralph, I am sad that we only e-mailed, that I never got to meet this amazing, funny, charismatic man who managed to hold on to his personality and hope despite his physical misfortune. It’s a reminder to seize the day, to tell the world about IBD, how much it sucks, and how they can help.

If you are dealing with loss, I wish you healing, and if I can help, by listening, by offering advice, e-mail me. If you need to talk about how IBD/j-pouch surgery is affecting your life, respond to this post-let’s get more discussion going! This website is a blessing. It’s something for which I am eternally grateful. Thanks to Mark & Megan for taking the initiative to create something to connect and assist others who have or are experiencing what they have experienced. And, let’s all take a moment to honor those we’ve lost, and to honor ourselves for being survivors.

Return from Pouch Paridise

by on Thursday, December 1, 2011 4:33

File this entry under: Coping/Support

Like a beacon calling to your consonant-shaped guts.

Bringing you an instant recap from my day of ass-reaming at the J-pouch resort that is Cleveland Clinic. This is trip number three for me total, trip two since I’ve been a bionic medical wonder, and trip two to see Dr. Shen, dubbed by me, “J-Pouch Jesus.” I flew out Monday and met up with my aunt and mom who were kind enough to accompany me on this trip. As I mentioned in my last post, I was oddly excited about the yearly check-up, mostly because I expected to receive hard evidence of my long-sought after health.   I just knew that pouch was going to be shiny and clean!

The clear liquid diet on Monday was the easiest it’s been in years. I wasn’t on steroids, I wasn’t on much of anything besides my coveted suppositories, allergy, and emo meds. I wasn’t ravenous, I wasn’t exhausted. I felt good. I’d never felt good before a scope in my life.  I was always exhausted, always in pain, always starving, but nauseous.  Not this time.  This time I felt downright fiiiine.  It was a notable difference for me to be retracing these steps in what felt like a different body from a year ago. When I got to the clinic for my scope, I wasn’t nervous. I mean, c-mon, I’ve had at least 30 of these things in my life, probably more, so it’s old hat. But, it’s just better at Cleveland. Like I said in the last post, they know their pouches. I was greeted by a competent, friendly nurse who knew all the lingo, “You are here for your pouchoscopy?” YES!  She looked at my arms and said, “Oh, you have bad veins!” This was only good because for once I didn’t have to prove it to them by being stuck five times by the amateur, and be a nervous pincushion by the time they finally call in the big guns. You get the big guns first. She got me with one stick, it didn’t hurt, and I hardly have physical remnant of the IV. I did my fleet enema myself, went to the bathroom, and went once more before a different charming nurse came to collect me for my scope. They were able to take me back early, so no waiting! As she rounded the corner to the endoscopy room with my bed, I saw Dr. Shen drinking tea and smiling as he sat at the computer and cheerfully greeted me. He immediately referenced a recommendation letter he wrote me for a scholarship for which I’m applying and we had a brief conversation about what I wanted to do in graduate school.  I told him, at which point he said, “You should go to medical school!” After more discussion about how I was doing re: any symptoms and pain, I rolled onto my left side, “scope position,”got my Fentanil+Versed combo, coughed a bit after the injection, and wilted onto the pillow.  I could see what was happening on the scope-screen, and was prepared to just enjoy the drugged-up bliss and the view of my beautiful clean, ulcer-free pouch, but that’s not what I saw. I looked up and I saw ulcers, and blood, at which point I said, “Is that an ulcer? Is that blood?!” And he said, “Yes…” I also heard through my drugged stupor, “Stricture, and afferent limb.” Somewhere in my mind, I panicked, but I was still too loopy for it to fully register.  I just knew what I saw was not good, that what he was noting was not good, and that scared me.

When I got into the recovery room and they brought me the photos of the scope I saw confirmation of what I thought I’d overheard in the exam room:  ulcers and blood.   I lost it. I instantly thought, “It’s not working…it’s Crohn’s…biologics, immunosuppressants, steriods…getting fired again, no grad school, no life. I’m sick again. NO!” I mean, it was like a really quick, really weird flashback to all the struggle I’d come through and I was instantly defeated and depressed. All the nurses were like, “What’s wrong!?” and before long I had my mom and aunt as concerned as me. I didn’t even think about pouchitis. I didn’t remember what good hands I was in.  I momentarily forgot where I was, that I had a physician who didn’t dole out drugs like Halloween candy-someone who truly knew what he was doing and cared about my quality of life. I remembered that as soon as Dr. Shen came back to the recovery room, took one concerned look at me, pointed at his eye and asked, “Why this?” I said, “I just saw the ulcers and the blood and it scared me.” He smiled his boyish grin and said, “Oh no, no, I fix. You not need to worry,” and it was like instant relief.

It just goes to show that even after all we’ve been through, as strong and tough as we’ve become, when we get the taste of sweet health, just the mere suggestion that it can be taken away, the visions of blood on a screen, sends us into outright  panic. I know I have PTSD, my therapists diagnosed it years ago after I had a barrage of wacky surgical complications my surgeon had “heard of, but never seen.”  I thought I had a handle on my paranoia and fear after therapy, medication, and my own therapies of yoga, prayer, meditation, and painting, but in that honest state the drugs create, I was just a scared kid again who was tired of being sick.  I’m not sure I will ever be calm when presented with a scope screen like that, even if it is, “just pouchitis.”

But, I’m not being too hard on myself.  This has been my life since I was 16, without much of a healthy break between, so I understandably have some fears with regard to my physical stability.  I’ve been fighting so long and have only had little teases of health here and there, at which point my body would rebel, stick out its tongue and say, “Just jokin’!”    Twelve years of that is a hard thing to shake.

Another thing that hit me hard was the contradictory state of my body.  Physically, I thought I felt good-I had energy, and no noticeable symptoms of pouchitis, yet the scope proved that I had moderate inflammation and ulcers throughout and up above the pouch.  There’s something unsettling about feeling disconnected from your body like that.  It felt like once again, I wasn’t privy to what my body was doing, and therefore, had no control.

Dr. Shen reasonably explained that it is totally normal to feel well, but have something amiss inside (there’s a medical term I’ve already forgotten) and reminded me in his logical but friendly way, “That’s why we do scope once a year.”

So, I don’t have to take steroids or anything new. I take a two week course of Tindamax, keep poppin’ suppositories, and I’m good.

During the clinic appointment, he elaborated on current theories, ones he’s proved, and told me some very common sense things to do and not do. The best of which was to not lose (or gain) any weight. I’ve put on a healthy twenty pounds since my scrawny Crohn’s flare days and I wanted to lose about ten, purely for the sake of my vanity, but when I told him thi he said, “No, you perfect.”  He then explained that one reason for pouchitis besides bacteria and autoimmune response like IGG4 pouchitis or Crohn’s of the pouch, is poor blood flow to the pouch, or ischemia. He explained a study where they examined patients with S-pouches, who although they had poorer overall function than a J-pouch, rarely ever had pouchitis.  The only distinction was that the composition of the S-pouch had less incidence of ischemia than J-pouches. J-pouches are still preferred because they have overall better function, and pouchitis is easily treated. He explained how some patients would have years of excellent J-pouch function without pouchitis and after twenty years or so would suddenly develop problems. He said that in most cases it was older men who had gained a significant amount of weight, which had put more pressure on the pouch, causing ischemia, and pouchitis. Brilliant! So, simple, but brilliant! So, he also said, no abdominal exercises that put pressure on or strain on my stomach. ie: no situps. Damn! (Just kidding!) Also, no heavy lifting. Basically, just don’t put pressure on or change the environment around your neo-organ too much. It’s a delicate shit-capsule. He also mentioned Lactulouse again and explained why he used it to treat pouchitis. It keeps the pouch acidic which is preferred. He didn’t seem too interested in probiotics when my mom chimed in about those, and said to drink one glass of wine (for its acidity) at night. So, no situps, no heavy lifting, no weight loss, wine?? Okay, doc! I can get behind that! But really, I feel like a new person from a year ago. Yes, I still mostly take it easy. I don’t work more than 20 hours a week, I do yoga, I meditate, I relax, I try to manage my stress, and I follow his orders because I trust him. When I told him how much his treatment had improved my life and thanked him he just said, “Well, you are a model patient. You listen.”

So, just a recap to let you know that if you are scared, still fighting these shitty diseases and/or pouch complications, you are not alone, and that there is someone who is devoting his life to help us.  And he’s really good at it.

Dr. Shen, Part Deux and The Third Button

by on Monday, November 14, 2011 14:42

File this entry under: Coping/Support

Dr. Shen, Part Deux

And

The Third Button

Hello no-coloned readers.   Long time no blog.   I’ve improved so much since last-year’s visit with Dr. Shen that I haven’t had much to bitch about.   This is my excuse for my vacation from Internet vent-cause-yer sick-land.   But, I’m glad to be back to tell you about my upcoming adventure to Cleveland Clinic.  I’m weirdly excited about it-I know, I’m bonkers, but  I kinda can’t believe it’s been a year already.   Time flies when you spend slightly less time on the toilet and get your life back a lil’ bit.   I’m excited because once again,  I am receiving treatment and will have my progress monitored by one of the best doctors in the world, probably the best pouch specialist (are there others even?).   I am admittedly also interested in the Versed+Demerol combo I’ll receive for the pouchoscopy.   I’m elated that I get to go to a place where they refer to the tube-up-new-plumming exam as a pouchoscopy, not a colonoscopy.  I’m relieved that I don’t have to give the, “It’s not a colon scope.  I have nooooo colon,” speech-(say in your best spooky, Vincent Price voice).

After the pouchoscopy, I get a manometry test, ie: a deflated balloon is shoved up my ass, inflated, then I poop it out. Yowza!  This tests my anal muscle tone.  I wish I could say it tested my level of embarrassment, but that ship has long since sailed.   At this point in the day, the drugs have mostly worn off and I’m getting good and bitchy from not eating solid foods in 1.5 days.  Baring any unforeseen problems with these tests and/or complications, I’ll go get some good cafe food and go shopping in the mall area of Cleveland Clinic (yes, you heard that right.)  After that, I get to hang out with my Mom and aunt, and wait to talk to Dr. Shen.  Hopefully during the appointment, when we review the tests I had earlier in the day, I’ll hear about how awesome I’m doing, how the suppositories he prescribed me are helping me empty properly and I won’t hear a mention of surgery.   After this, I’ll tell Dr. Shen how awesome he is, and after all the gushing, I’ll go to a nice dinner with my Mom and aunt who were kind enough to accompany me on this journey.  In a couple of days I’ll go home and not think about this for another year.  Here’s hoping.

The Third Button

Why do I purchase pants that have that blasted third button on the inside? You know what I’m talking about? That extra flap on the inside of pants that exists despite a zipper and two hooks already in place.  I always forget about the third button when I’m rushing to the loo, tearing into my pants (not as sexy as it sounds), am primed for relief then, “CRAP! Third button…you screwed me again.”

Take another walk

by on Monday, October 10, 2011 0:23

File this entry under: Coping/Support

Hey guys, it’s been a while, and I thought I would update everyone one what has been going on since my last post back in September of

We'er getting married!

last year. At that point I had, had one more surgery in an attempt to fix a persistent leak just below my jpouch. I waited about six months before going back to the hospital for another pouch-o-gram to find out that the leak was finally gone. I scheduled my take down for May 16!
In those six months I feel like my life was moving at the speed of light. In January, Mike and I got engaged, I started back to college, I tried out for the volleyball team, ( and made it), and I was working every chance I got. I was trying to keep myself so busy that the time would seem to go by faster. It worked, it went so fast it seemed like I blinked and May was here. Spring volleyball was over and I finished the semester with a 4.0!!!!
Everything went as good as could be expected with the take down surgery, fast, clean, no problems, ect. I woke up and the bag was freaking gone!!!! I felt amazing , I felt like I was getting my my life back. I had made all kinds of plans, and promises to Mike that the worst would be behind us and we were finally done with this huge mess. We were going to be on easy street, living the life of our dreams.
I Spent only a few days in the hospital and was sent home in under a week. Of course if you have read my other posts you know that it is never that simple or easy for me. Only one day after coming home, I had to call an ambulance to come get me. I was in horrible pain and I couldn’t get out of bed. I went back to Duke and ended up staying for almost another week. The pain I was having was chalked up to some sleepy guts and I was sent home once I was feeling better. After a few days I flew back home to New York with my mom again to do the rest of my recovery there.
I’m not going to lie, recovery was rough! I was in the bathroom ALOT!!!! I didn’t care that I was running to the bathroom all the time, I was just so happy to be using the bathroom like a “normal” person! Now I had some cramping and some other minor pains but I didn’t worry to much, my surgeon told me that things would be tough for the first few weeks, So I kept pushing on.
Now I think that with my tract record you all know that it couldn’t have been this simple for me. By the first week of June I started having some more serious issues. I started having horrible cramps and I was running, literally, to the bathroom every five mins. The cramps continued to get worse and worse, and I was starting to feel terrible. With only a few days until my scheduled flight back down to North Carolina and Mike my mom rushed me to the small ER in the next town over. There I had all the tests done and they thought I had a blockage. They put an NG tube up my nose and into my stomach (loved that) and they had a transport take me back to the hospital in Eire, PA where I was sent for the blockage I had two years ago.
Once I got to that hospital the surgeon who helped me last time came into see me. He wanted to wait before he did anything to crazy, so, we waited a few hours and once he realized that things weren’t getting any better and the pain was only getting worse he rushed me into surgery. The only problem with that was he wasn’t going to able to do the surgery. This general surgeon who I had never seen before showed up. When I first met him I liked him. He seemed really confident and experienced with the situation that I had going on. So into surgery I went.
Now after the surgery I was completely out of it for the next 10 to 15 days, so I only know the rest of this because my mom filled me in. Once the surgeon got inside he found that it wasn’t a blockage but in fact a leak. I had been leaking for who knows how long and I had gross contamination in my abdominal cavity. He fixed the leak and cleaned out the contamination and said that everything looked alright but that I wasn’t out of the woods. During the surgery he ended up having to give me a 6 inch midline incision ( my biggest yet) and (with my crap luck) the ostomy back. Now, almost everyone knows that intestinal leaks mean infections and, I ended up with several of them. I was placed on a few different antibiotics and a week went by, during this time I only continued to get worse. They were trying everything from more medication to blood transfusions. My mom said that I had tubes coming from every where. There was about six machines on my IV poll and there were several IVs hooked to each arm. I was completely out of it and didn’t have a clue what was really happening to me. After about a week with no improvement they brought me back into surgery thinking that I was still contaminated. The surgeon cleaned me out again and stapled me back up. Now as I was right in the thick of things Mike and his parents flew to NY to see me for a weekend, thinking i would be better than i was. I only remember the first moment Mike walked into my room. I instantly fell apart. Shorty after they got there a horrible pain started in my lower back. They took me down to get a CAT scan. Once the results came in, we found out that I not only had one kidney stone but several in each kidney. The rest of that weekend with mike and his family was a blur. A few days later my white blood cell count was still up and even though the kidney stone had calmed down, I was still seriously sick. The doctors started poking around on my stomach and come to find out I had a serious infection in the big midline incision. Once they found it, they opened it up and started giving me the right antibiotics to treat it. In a matter of days I began to do better.

I know that I’m long winded but I need to take you back and tell you about the surgeon who fixed the leak. The only thing he can get credit for was saving my life. Yes that was the most important thing but over all he didn’t really have a clue about what he was doing. After the second surgery, when I was back in reality he came to talk with us about what we were looking at. His whole demeanor had changed. He changed the whole story about where the leak was. He became fidgety, and he wasn’t confident anymore. He couldn’t even look me in the eye. I started to get worried at this point. Later, after talking to my rock star surgeon back at duke I found out that he only spoke to her one time and he had no clue about the jpouch. It turns out that he didn’t know what he was looking at. The worst part is that my surgeon at Duke has no clue what he did to me other than save me life. She couldn’t make scene of anything he said to her over the phone or anything in the surgical notes. Now like I mentioned before, this guy gave me the ostomy back he placed it right back where the old one was. This created a huge problem, the stoma and the open midline incision were only centimeters apart, getting a seal on the bag was just about out of the question. There were days where I would have to change the bag every couple of hours. It was horrible. While I was in the hospital even the two ostomy and wound care nurses couldn’t figure it out. Before they finally sent me home we decided that a wound vac may fix the problem .They were hoping that the vac would allow me to seal the bag while keeping the stool out of the incision. It took for ever to get the paper work done and the insurance company to approve the wound vac. After a whole day of waiting it came, and they put it on. It seemed like it was going to be my saving grace. Well it would have been if I hadn’t waited for it all day and ended up with a broken one. I was still able to go home but I had to track down the company and have them send me a new machine. It finally came the evening of the next day. Now that I had a working vac and it was doing what it was supposed to I figured out fast that this in fact was not going to work for me. It was incredibly painful and difficult to change. Some days I had up to three home care nurses at my house at one time trying to figure it out. I lasted only about two weeks with it. During those two weeks I wasn’t eating and I was hardly drinking anything. All of my waking hours were spent in horrible pain and dealing with the bag/ wound issues, not to mention I was incredibly depressed. Most days I wanted to give up, crawl into that dark whole and stay there. I was speeding down hill both mentally and physically almost at warp speed. It got to the point where I was so weak, I couldn’t hardly walk let alone sit up on the couch. As much as At that point, I would have just rather sat there and withered away my mom forced me to go back to the hospital. Once i got there they said I was severely dehydrated and had extreme malnutrition. It was got bad it got to the point where my other healthy organs began to shut down. They sent me back to the hospital in Erie where they took just over a week to get me back on tract. Lots of fluids and slowly introducing food into my diet.

Now while all of this was going on I thought that I was going to have to give up everything at home, school this semester, volleyball, and work. I didn’t know what I was going to do. I had told my coach I wouldn’t be able to be on the team and that I didn’t think I would even be able to go to school this semester. By this time it was nearing july and It didn’t see like I would be healthy enough for any of the things I loved to do. The only thing I could do was cry, and I did that a lot.I was absolutely devastated. I know that my mom felt so helpless, she couldn’t do anything to make me feel better. She was always the one person who could help pick me up and I was lost to her, to everyone, but mostly myself.
At some point while I was laying in that hospital I found Sara again. I found the strength I needed and I decided again, to stand up and win this fight. Some where in my strength and determination I found the drive I needed. I decided I was absolutely not going to give up not even one more thing because of my medical issues no matter how sever they were or they got. I was going back to NC, back to my life with Mike, back to school and back to the volleyball team!

Right after i got out of the hospital the last time

After I finally recovered enough to head back home with my mom, we left the hospital. I was still struggling emotionally with all the changes that had happened. It was almost like I was morning the loss of something. I could see myself passing through the stages of grief which was incredibly odd. The doctors gave me pills to help me deal with things and they helped only a tiny bit.
I bought another plane ticket back to NC. The day before I was to leave, I woke up with a partial blockage and my mom had to yet again take me back to the hospital. They wanted to send me directly back to Eire but i asked that they hold off. I did not want to go back there! It turned out that waiting was the best think I could have done, the blockage cleared and I was able to walk myself put of the ER!
One week later I finally made it back to NC. A few days after I got home Mike and I went to see my surgeon at Duke. There I found out that

The volleyball team

the surgeon up in Erie didn’t really know what was going on when he opened me up and my surgeon is lost as far as what he did to me. Other than that she thought I was doing incredibly well with all things considered. We talked about volleyball and settled that I could play with some restrictions. At this point I was still having some serious problems but I felt like there was still some hope. I felt like i wasn’t going to lose everything again. I couldn’t have any thing done to change the situation any time soon so I figured going back to school would be the best thing for me, and going back to school would let me play volleyball. So with only being out of the hospital for two weeks I went to our first practice! Now I’m not going to lie, coming back after everything I had gone through was one of the hardest things I’v done. It was hard for a lot of reasons but the two that stick out in my mind now were how incredibly weak I was and having the restrictions. My body just didn’t do what I wanted it to. We are three months into the season and it’s still hard everyday but the positives out weigh the negatives by enormous amounts. Today, I am stronger than I would have been if I hadn’t played. Playing pushed my body to come back faster.
Now, my last surgery was around the middle of June as of right now I still have an open mid dine incision. Because of this my bags don’t seal right and I am having to change the bag sometimes up to three times a day. On top of that for some reason my out put is so watery and so fast. When I eat something it takes 30 minutes to an hour for it to come out in the bag. Its horrible! My skin is extremely raw and sore. I have seen several wound care and ostomy specialists and no one can come up with a better solution. I’m just not sure what to do.
On top of everything that is going on, my teeth have become incredibly week. I am breaking a tooth at least once a week, they are literally falling apart. I recently went to the dentist and in the next month they have to pull out 5 of my back teeth. They want to do this all at the same time to save me pain and to get it over with. I was told that to fix the damage that has occurred it’s going to cost in the realm of 18,0000 dollars. I don’t even have 1% of that. I have dental insurance but it doesn’t cover hardly anything. Im at the point now that eating is becoming hazardous to my health. I can’t chew anything right now and I am terrified to eat. I have been to several dentist and I have been unable to find one with enough commission to help. I can’t afford the help I need and the help I need won’t come without money. I just don’t know what to do anymore. So while everything on the outside seems to the heading in the right direction my body just can’t seem to get it right.

I really want to thank my family for all the support they have given me through all of this. I would not have made it without my mom! She is the most amazing person I know and will ever know! There aren’t enough great words to say about Mike! I am by far the luckiest lady in the world to be marrying such an awesome guy!  My Dad spent so many hours at the hospital with me, watching movies and just holding my hand! I can’t express how grateful I am to have Mikes family in my life. They are so supportive and helpful. I’m so glad they were able to come visit! My wolf pack girls, we can get through anything together! I love you all! Last but never least my best friend, my wife,  Michelle! I

My wife and I!

could not ask for a better soul mate! You will never know how much you really helped me though all of this. I am a better, stronger person because of you! I love you!

The Wolf Pack

I know that this too shall pass and some day all of this will be behind me. So I’m going to keep doing what I do best and keep on going. I know that there is a light at the end of this tunnel and I’m going to find it! Besides, I have a freaking wedding to plan!!!!!!!!!

Thanks for reading guys, I hope that your all doing well and staying positive!!! You are all such a great support team!!!!

Thank You Supporters of Jpouch Dot Net!

by on Wednesday, August 24, 2011 21:28

File this entry under: about this site

Support Jpouch Dot NetRecently, Jpouch Life has received some really really generous donations. Thank you! (If you haven’t noticed this before, there is a really pretty yellow-orange donate button over there on your right.) We wanted to post this quick note to let you know that we are here, the people on the “backend” that pay for server space, domain registration, and all the other things that go in to bringing you this great online community to share information about a topic that’s hard to find information about.

In fact, that’s our whole deal, if you recall why Mark and Megan started up this space in the first place. It’s also why Eric decided to get involved and make Jpouch.net a dedicated website, not just a WordPress.com blog. Detailed photos and personal stories of the J-pouch process, and really all the living that goes on, is why we’re here. Many of our bloggers have gone on to write their own blogs, and we couldn’t be happier for them. We’re also happy that they still drop in from time to time to say hello and provide us with much anticipated updates.

Once again, thank you so very much for contributing, financially, emotionally, verbally, and silently, to this great community. Really, thanks.

Tags:

2 Years Post TakeDown

by on Wednesday, July 20, 2011 22:02

File this entry under: Coping/Support

It”s been two years since my takedown and, as a society, we still don”t have flying cars or cloned dinosaurs. That I know of. I mean, I check the news daily to see if any of these scientific breakthroughs have become reality, but no. Nothing. Come 2034, I better have robot legs with jet thrusters. For now, I”m pretty happy with just settling with the crazy medical awesomeness that is my j-pouch. I”ve had no major issues like, I don”t know, space scurvy (which I imagine space pirates with space-pouches get).
This is what did happen, though:

The Dreaded Pouchitis: Not as dreadful as space scurvey

You see, it took me 2 years and a trip to Argentina to get pouchitis. While there on a business trip, a steady diet of meat, more meat, and some meat, coupled with small breakfasts, very late dinners and no snacks in between, all upset my plumbing. I might have gotten a tad dehydrated as well and yes, I am now 34% fluent in Spanish. My last two days and the flight back was like an attempt at setting a world record for most bathroom visits. They should have punchcards for bathroom stalls where ten visits gets you a free sandwich, but I secretly hope that they will never sell sandwiches in bathrooms. The first thing people told me when I got back to the office (aside from “oh we thought you left so we divvied up your stuff”) was that I noticeably lost weight. Well, I did. Like 12 pounds.

When I had this increase in frequency and odd pressure associated with the urge to push (you know, when you need to give a little push to gently remind your bowels that it”s showtime), I thought it was just a souvenir of Argentinean culture and not anything too bad. On behest of my friend (who happen to have been one of my nurses), I went to visit my surgeon to get it checked out. A cold finger poke later and she said yep, all signs point to pouchitis. Pouchitis is inflammation of the ol” j-pouch, so it might feel like colitis again. Oh j-pouch, you trickster you. There was no something-something-osis (where there is some tightening, which I took as being bad), so I got a short dose of Cipro and I was fine literally two days later. Seriously, this is a cake online casino dgfev walk compared to everything we”ve been through.

Pictured: me doing pushups in the middle of nowhere with pouchitis. See, still better than UC. Not pictured: a bathroom or a sea monster.

Scars: A roadmap to victory!

The scars themselves are minor footnotes in my journey to recovery. I could tell people that the scars are from when I was in a bar fight with a grizzly bear, but I take pride in where they come from and what they represent.

15 pounds heavier; it all went to the cankles.

 

It”s The Little Things: Being an undercover “Normie”

“Normies” are normal people. Having this newfound sense of health, I”m going in deep undercover into their shady, secret underworld of “physical activities” and “not being too concerned with where the bathrooms are”. And I have to say, it”s the little things that make you appreciate being healthy. This point really hit home for me when I recently went to a Rammstein concert and spent the entire show trapped up front in a wave of bodies, able only jump around and bang my head to rock out. I didn”t once get that sense of urgency or accompanying anxiety, and it was awesome. You know when I pulled this off last? 2001 when I was still pre-UC. I feel blessed to have this additional sense of perspective.

Supporting the Cause: Poop

Do you happen to live in the San Francisco bay area and want to be part of a supportive group but don”t like the idea of a sterile, boring support group and your expectations aren”t too high? Well we”re trying something different. I have joined forces with Gwendolyn, a friend and Team Challenge mate, to create a supportive social group for people who are affected by Crohns and/or Colitis. Check us out at http://www.facebook.com/SFSSG!

The SFSSG!

Progress, yo!

I censored the mooning. You're welcome.

 

Help Joplin!

by on Friday, May 27, 2011 10:05

File this entry under: Coping/Support

Word is Joplin has zero ostomy supplies. I know that when I became an ostomate, I got TONS of free supplies from the big companies that are just sitting around. If you have supplies, please send them.

 

The President of the Joplin Missouri Ostomy Association reported their supplies were destroyed when St. John’s Hospital was hit by the tornado. Please spread the word that he will accept shipments and get them to the people who can use them:

Benjamin Moore
7589 SE Quaker Road
Riverton KS 66770