J-pouch Life » Lizz http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 30 Dec 2011 05:31:30 +0000 en hourly 1 http://wordpress.org/?v=3.3 Loss & Gain http://www.jpouch.net/2011/12/29/loss-gain/ http://www.jpouch.net/2011/12/29/loss-gain/#comments Fri, 30 Dec 2011 04:09:53 +0000 Lizz http://www.jpouch.net/?p=2680 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.

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]]> http://www.jpouch.net/2011/12/29/loss-gain/feed/ 2 Return from Pouch Paridise http://www.jpouch.net/2011/12/01/return-pouch-paridise/ http://www.jpouch.net/2011/12/01/return-pouch-paridise/#comments Thu, 01 Dec 2011 18:33:48 +0000 Lizz http://www.jpouch.net/?p=2674

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.

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]]> http://www.jpouch.net/2011/12/01/return-pouch-paridise/feed/ 4 Dr. Shen, Part Deux and The Third Button http://www.jpouch.net/2011/11/14/shen-part-deux/ http://www.jpouch.net/2011/11/14/shen-part-deux/#comments Tue, 15 Nov 2011 04:42:29 +0000 Lizz http://www.jpouch.net/?p=2672 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.”

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]]> http://www.jpouch.net/2011/11/14/shen-part-deux/feed/ 2 Belladonna Wars? http://www.jpouch.net/2011/02/11/belladonna-wars/ http://www.jpouch.net/2011/02/11/belladonna-wars/#comments Fri, 11 Feb 2011 18:56:01 +0000 Lizz http://www.jpouch.net/?p=2594 belladonna crohn's disease drug Hey, guys.  Long time no blog.  So, here’s the scoop-I’ve been doing a lot better since my visit with pouch guru Dr. Bo Shen back in November.  He diagnosed me with efferent limb syndrome which means that the connection to my j-pouch goes at a diagonal instead of vertical making it really hard to poop!  This explains my pelvic pain, multiple trips to the bathroom, anal cuff spasms, basically everything!  So, he prescribed a drug he said was, “very safe.  No side effects.  Can drive car.”  This miracle drug (and it is) is Belladonna/Opium suppository.  I did a little research on it because I like to know what I’m putting in my body, and also, it’s nearly impossible to get and I wanted to know why.

So, Belladonna is old school.  It has many uses, many names which include “Deadly Nightshade”.  It literally means, “beautiful woman” in Italian because drops made from the plant were used to dilate women’s pupils (considered attractive back in the day).  Although it is highly poisonous, it is very useful in medicine when compounded properly.  It’s used a lot for gastrointestinal problems like motion sickness and can be used as an antispasmodic to treat IBS and Crohn’s disease.  One compound is used to treat Parkinson’s, and others are used for heart resuscitation.  In my case, it acts as a muscle relaxant, helping my dyschezia (difficulty in pooping as a consequence of long-time suppression to defecate), anal spasms, it also helps with pelvic pain, reduces my trips to the bathroom, and helps me empty!   According to Wikipedia, in the past, when combined with opium, it was used as a “flying ointment” to get witches to their brew-ha-ha’s.  Seriously, look it up!  So, aside from hindering my mode of transportation, not being able to get this has resulted in increased rectal pressure, multiple trips to the bathroom, anal bleeding from said bathroom trips, soiling myself at night, not sleeping b/c I have to get up 3-4 times a night to poop, incomplete emptying…the list goes on.  So, basically, back to my crappy “normal”.

I can’t get it because there’s a shortage of the beautiful lady.  However, before (and I’ve only had one rx, by the way) it was no easy feat to acquire it either.  I felt like such a druggie calling all these local pharmacies and getting turned away because, “it’s a class two drug.”  Class one drugs are mostly your standard illegal drugs that they consider to have no or little medical use and are primarily used as a recreational tool to get you high.  Class one drugs include LSD, marijuana, “magic mushrooms”, meth, PCP, etc.  You get the drift.  (My research from the DEA’s website.)  Class two drugs have a use medically, but are narcotics like Dilaudid, Ritalin, OxyCotin, Percocet, etc.  You get the drift. Most of us here have had Dilaudid or some form in an IV drip after surgery or while hospitalized for pain.  It has the effect of getting you “high” but is such a useful tool for pain, it is still used.  Enter my suppositories.  The doseage is 16.2 mg of belladonna and 30mg of opium.   I should mention that in my research I found that belladonna can also be used as a recreational drug that produces hallucinations and delirium.  However, it’s poisonous and generally not worth that attempt.  I will admit, the first suppository made me kinda giggly and “loosy goosy” but had no ill effects the next day, so it’s not something one would use for a “high” effect.  However, it did make me super  happy because it helped me poop and relieved my pain and urgency.  Plus, after getting drug-induced lupus from man-made drugs, I was eager to try something natural.   And, it helped! After five years of trying, post surgically, to figure out what was wrong with me and to then find something so simple that helped and may help me live a more normal, productive life, and avoid surgery no. 8, I was ecstatic!

So, the first rx I had was a feat to have filled.  I eventually had luck with my mail order pharmacy who couldn’t imagine why I’d had such trouble in the first place.  One catch-legally, Dr. Shen can’t write me more than a month’s supply (b/c it’s class two), and it can’t be called or faxed in-has to be mailed in, by me…Who lives in Texas.   Dr. is in Ohio…hmmm. So getting refills should be interesting.  And it has been!  They faxed one in and that was denied, but I called Dr. Shen’s office and they are awesome and mail it to me so that I can then send in to my pharmacy.  I should mention that at this point I’ve been without it for two weeks and am crapping myself regularly and getting desperate.  Life without pain and pooping all the time is SO nice!  So, today I get a call from my mail order pharmacy…they can’t get it. UGH!!!  So, I call the manufacturer=shortage of belladonna.  I was shocked b/c I thought the issue had always been opium.  Anyway, I’m trying again to get it from CC pharm, but this will be the third (the other two were destroyed b/c they couldn’t be filled) rx for this in a month from me trying to get my medicine, so who knows if he can even write me another one legally.

So, is it just me, or is this totally ridiculous?  That I’ve finally found something so simple that helps, and I can’t get it because of regulations and supply problems (probably related to those regulations).   I can easily get something that could cause cancer, lupus, tuberculous, infections, the list goes on, but something with essentially no side effects I can’t get.  That makes perfect sense.

I’m going to try to find an alchemist or someone who can just make it for me and hopefully not poison me.

The lengths we go to for health.

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]]> http://www.jpouch.net/2011/02/11/belladonna-wars/feed/ 7 Cleveland Clinic, Day 1 http://www.jpouch.net/2010/12/08/cleveland-clinic-day-1/ http://www.jpouch.net/2010/12/08/cleveland-clinic-day-1/#comments Wed, 08 Dec 2010 16:26:46 +0000 Lizz http://www.jpouch.net/?p=2577

Dr. Bo Shen

Well, I finally made the pilgrimage back to Cleveland Clinic (CC) to see the famed “King of Pouches”, Dr. Bo Shen. As one involved in the J-pouch/IBD community, I had, of course, heard of Dr. Shen before. He’s sort of the last desperate act for a lot of people who come from all over the world to seek his counsel. I decided to go after a friend of mine and my mother’s met with Dr. Shen, e-mailed me and said, “Liz, you have to go. If your insurance doesn’t cover it, I will pay for it. He’s that good. He can help you.” So, by divine Providence, our new insurance did cover Dr. Shen, and I made an appointment immediately. When I called in October, his first available was January 18th. I was a little disappointed to wait that long, especially after developing the lupus issues, stopping Humira and feeling at a loss for IBD/J-pouch management, but enter more divine Providence. A friend I met, also through the IBD community, had her surgery at CC and was a patient of Dr. Remzi’s, a colleague of Dr. Shen. So, she got me Dr. Shen’s e-mail. He got back to me…the same day! A random patient he’d never heard of, never had a referral from, AND he offered to get me in sooner. So, here I am, writing about my appointment yesterday, and although it was a long, exhausting day of tests and appointments, (twelve hours to be exact), I feel so thankful to be in the care of this expert.

I arrived at 8:00 a.m. yesterday morning and checked in for my pouchoscopy. Naturally, I’d done my “prep” by drinking only clear liquids the day prior-no food. This is a struggle for me sans Prednione, but damn near torture after being on ‘roids for almost two months. But…I did it. The scope was my first meeting with Dr. Shen. I found him friendly, cheerful, and very informed. We talked a bit about my history, they loaded me up with Demorol (which I’m typically allergic to, but didn’t bother me yesterday) and Verset, and although I was loopy, I was able to watch the scope on the screen, watch him take the biopsies, and ask him probably the same question ten or fifteen times. When I was wheeled back into my curtained area, Dr. Shen came back to give me the images from the scope and review them with me. At that time, still under the blissful spell of Verset, I declared, “Dr. Shen, you are J-pouch Jesus. This is what I shall call you.” He cracked up.

After what was probably a much more lucid conversation with my mother, he scurried off to his next ass-reaming. He instructed me to go have several tests, “right now.” So, we went to his scheduler, and I went immediately to what I referred to as my “ass trajectory” test, although it was actually called marometry test. I lied on my left side, the typical ass-exam position, while a doctor placed some kind of sensors around my “hole”, then threaded a tube up my anus to my pouch. First, I did a few squeezes to test my muscle tone, then he inflated the balloon and asked me to tell him when I felt like I needed to have a bowel movement. I lied there for a while, waiting to feel something, and he asked me two or three times, “Do you not feel that yet?” I said, “Well, I can tell something is there, but I don’t feel like I have to go to the bathroom.” I told him, “After years of training myself to not go, I think my sensations are a little off.” Turns out, that’s true. Dr. Shen suspects I have dyschezia, which literally means, “difficulty in defecating (usually as a consequence of long continued voluntary suppression of the urge to defecate)”. The doctor doing the procedure moved the balloon down a bit and man I could really feel it then! It felt like a pain on the left side, similar to what I get when my anus spasms. I eventually was able to push the balloon out. I then wiped my ass, pulled up my pants, went to the bathroom and headed for the lab. There, I had several vials of blood drawn and was given a cup for a stool sample. Mom and I trotted off to building H to wait for my barium enema test, but they couldn’t get me in until 4:00 p.m. and they were running behind. My appointment (back in building A) with Dr. Shen was at 4:30. After not eating for two days, I finally hit a wall in the waiting room. I hadn’t been allowed to drink or eat after the scope in preparation for the barium test. Fierce bitchiness set in and I said, “Okay, screw this test. I’m done not eating. If I don’t get something to drink or eat in the next ten minutes I’m going to pass out.” So, we said sayonara to the X-ray lab and headed to the nice cafe nearby. I scarfed down a small portion of bland pasta and a few bites of yogurt-just enough energy to get me through my appointment with Dr. Shen. I wanted to be able to think and be semi-coherent during my appointment with him, and two days with no food, and a full day with no fluids does not a coherent no-coloned girl make.

We spent a good deal of time talking with Dr. Shen. He’s surprisingly informal, which might be the secret to his success. He gets you in when you need to see him, he doesn’t have someone make copies of your records, you just bring what you have and you sit and flip through them together. This is really nice because medical records are not always correct. Typos and misinterpreted dictation can lead to confusion, so it’s nice to be able to go through that with your physician. We also watched my defecating pouchography (x-ray video of me pooping) and he saw some pouch anomalies. He threw out about four possible theories for my problems. Two were functional (some sort of buldge around my anus/J-pouch that is too close to my vagina), a possible fistula from my J-pouch to vagina (eww). He is testing me for IgG4, autoimmune pouchitis, and then of course trying to determine if I do have Crohn’s. My pouch looked good in the scope because of Prednisone, so it didn’t look as nasty as it did during my last scope. I go today for the barium enema (more not eating) and another appointment with Dr. Shen. I really appreciate how thorough he is with his patients. I think it’s so refreshing that he really understands that it’s important to cram in as much as you can while you are here. He also told me that I should be tested for anklosing spondylitis, a concurrent condition that can occur with IBD. He also mentioned that I need to switch to an estrogen-based birth control pill.

What I’m listening to: De Stjil, White Blood Cells, and Elephant by the White Stripes.

Where I’m eating for my next meal: Mallorca, fine dining Spanish in downtown Cleveland
What I’m thankful for: All the kind people, my mother, J-pouch Jesus.

Cutest story: Our bellman, John, is also a pastor, and when we came down to get in the “ride” he’d arranged for us, he outstretched his arms, motioning for mom and me to come under each one, gently hugged us, bowed his head and began to pray for “Sister Davis.” I didn’t apprise him of my new surname. I figured God was privy. After the prayer, we turned around to see our car was a white stretch Lincoln towncar. Mom was crying from the emotional prayer, I was cracking up that we got a limo. We had a lovely conversation with our helpful driver. Nice way to start the long day.

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]]> http://www.jpouch.net/2010/12/08/cleveland-clinic-day-1/feed/ 6 J-Pouch Jesus http://www.jpouch.net/2010/11/28/jpouch-jesus/ http://www.jpouch.net/2010/11/28/jpouch-jesus/#comments Mon, 29 Nov 2010 03:55:45 +0000 Lizz http://www.jpouch.net/?p=2578 Electric Jesus

So, I feel a bit like I’ve been raping the Jpouch.net homepage lately.  In my defense, there’s been a lot going on and I’m under the impression that you guys are fascinated with my suffering.  Just joking.  Actually, I come to you now in a state of gratitude and excitement.  After years of trying to deal with Inflammatory Bowel Disease (IBD) with medicine, surgery, more medicine, more surgery, natural remedies, you name it, I am finally going to see the puppet-master of J-pouches, Dr. Bo Shen.  If you’ve read the jpouch.org board lately, you know or have heard of Dr. Shen.  He is a gastro at Cleveland Clinic in Ohio and is pretty much the bee’s knees when it comes to J-pouch problems.  He recently published a paper about IgG4 Pouchitis which is a fascinating discovery.  He’s on the cusp of all new research because he’s the one doing it.  His patients love him because he is kind and he knows his shit.   I would be a big fat (thanks, Prednisone) liar if I told you I wasn’t batshit crazy excited to be doing scope prep. tomorrow, driving seven hours to Cleveland with my mom in order to have a scope and clinic visit on Tuesday with Dr. Shen.  I am excited because maybe, just maybe, after over a decade of fighting this fucking disease, I will get some answers, and hopefully, a solution.  I’ve porked-up a solid ten pounds since being on Prednisone over the past month for lupus.    I’m interested to see what state my pouch is in sans Humira, but ‘roided up.  It feels unhappy despite my steroid-savior.

As I journey to Cleveland, have my innards examined, blood and tissues meticulously searched for anomalies, and decoded by my J-pouch Jesus, you, dear readers, will have a front-row seat.  I will photograph, video, and all-around-document my experiences there, and hopefully come back to you with new, promising news in the world of IBD and J-pouch medicine.

Wish me luck!

Cleveland Rocks!

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]]> http://www.jpouch.net/2010/11/28/jpouch-jesus/feed/ 2 Fear Monger, MD http://www.jpouch.net/2010/11/04/fear-monger-md/ http://www.jpouch.net/2010/11/04/fear-monger-md/#comments Thu, 04 Nov 2010 07:14:10 +0000 Lizz http://www.jpouch.net/?p=2562 Hi, guys!  So, I’m still alive.  I thought I would give you a brief update about how things are going with lupus.  It pretty much sucks.  It’s not like I’m not used to pain and my body doing weird shit, cause I totes am. However,  I am used to it mostly being invisible to the outside world.  Previously, this was something that both pleased and annoyed me, because I could be in excruciating pain, exhausted, but still get the, “But you look so good!” comment.  Well, lupus is very visible for me.  In addition to my freakishly swollen finger joints, I have a rash all over my neck, chest, torso.  I can cover that up with clothes, but it’s spreading to my face! This is forbidden territory, lupus! Stay the hell away!  Anyway, it’s like this scaly, red rash.  Not quite hives, but basically.  Today my eyes started itching so bad I kinda wanted to claw them out.   It feels like there’s sand in them and my vision is kind of blurry.  They are super wattery from all the itching and I’m getting that nice crust around my eyes.   I look kinda shitty, but it finally matches the way I feel!  Like I said though, not sure I like it.  I can be honest with you guys, I’m kind of vain.  I like my pretty, milky-white Southern-belle skin and bright blue eyes.  I liked having the illusion of health, if only for myself.   This scaly-skinned red, crusty-eyed monster is not working for me.

How does the pain compare to Crohn’s though?  It’s just…different.  I can’t say that it’s worse, although in some ways it is.  I could always be mobile with IBD-well, not when it had me bed-ridden, but I could generally haul major ass to the bathroom.  Not so with lupus.  I basically hobble everywhere, grunt or yelp loudly every time I get up or down.  The only way I can sleep is under a blissful pain-pill coating.  It’s basically affecting every other part of my body.  I have had diarrhea, but haven’t noticed much in the way of Crohn’s other than that.  My stomach isn’t terribly painful, but my muscles, joints, and bones are.  Skin, eyes, etc.  It’s just a totally different experience-different body systems, different pains, different restrictions.  I’ve been sleeping a LOT.  The only productive thing I did today, which basically turned out to be a complete waste of my time, was go to see a new GI here.  Now, the term “specialist”…don’t read too much into that, because the last few I’ve had have not known what to do with me.  I appreciate that a lot of weird, unfortunate shit happens to me-hence my seeking the assistance of an expert.  I did admire his bluntness, but he mentioned, more than once how severe and unfortunate my case was.  He said, and I quote, “I live in fear of your situation.”  I’m sitting there, hunched over in this chair, dead exhausted, covered in red spots, thinking, “Are you fucking kidding me?”  Believe me, I am FAR past sensitivities.  I like people that tell it like it is, but really, doc.   No shit.  I don’t need to know how bad I am.  I am completely fucking aware!  I need your help, not for you to state the obvious.   Which, is pretty much all he did aside from some blood work.

Now…on to the GOOD news! Yay, I lurve good news:) So, I think part of the reason I can deal with the crap storm around me is because I have faith and an amazing group of people in my life.  First off, the IBD/J-pouch community.  You will not find more helpful, generous people.  You guys rock!  Second, my friends and family are just so loving.  It makes it a lot easier to deal with this crap when you have a ton of people that truly love and care about you and want you to be better.   I have a lot of people in my corner.   This includes past doctors.  One, and probably my only good GI ever-from Vanderbilt- saw a post about me on Facebook and e-mailed me to see if he could help.  That’s pretty awesome.  Also, a good friend of mine recently saw Dr. Shen at Cleveland Clinic and essentially said, “Liz, you HAVE to see him. I will pay for it if your insurance doesn’t cover it. He’s amazing.  You have to go.” So, obviously that’s super sweet on a number of levels, but thanks to divine Providence or what have you, our new insurance covers Dr. Shen and all docs at CC, so that’s freaking awesome!!!  Also awesome, Miss Jackie Z., fellow jpouch.net blogger, got me Dr. Shen’s e-mail so I could touch base with him, inform him of my history, and schedule any tests.  During this exchange, he decided that I need to be seen ASAP and is getting me in this month!  Another prayer answered.

So, even though things have been sucky and I kinda feel like Goldblum in “The Fly”, I see a light at the end of the tunnel, I see hope, and that’s what I needed more than anything.

AWESOME UPDATE!!!!

At the urging of my GI, I went to a run-of-the-mill Urgent Care Center.  The doctor examined my eyes, rash, etc., gave me a shot of steroids in the ass, an Rx of Prednisone, and drops for my nasty eyes.  When I woke up this morning, for the first time since my last dose of ‘roids, I was not in pain!!! OMG, I cannot tell you how thrilled I was when I stretched out this morning and nothing hurt! All my joints moved with relative ease, but no pain! Ah!!!! I am so excited! Feeling good puts me in the best mood :)

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]]> http://www.jpouch.net/2010/11/04/fear-monger-md/feed/ 6 Body, You Suck. http://www.jpouch.net/2010/10/20/body-suck/ http://www.jpouch.net/2010/10/20/body-suck/#comments Wed, 20 Oct 2010 18:01:19 +0000 Lizz http://www.jpouch.net/?p=2552 Today is one of the days I hate my body.  It is just not working with me!  The good news is, we got to Dallas safely and without too much hassle.  Thanks to a two-week dose of the dreaded Prednisone, I had energy and the roid-rage needed to move 2,000 miles.  I was also allowed the use of my hands and feet since it was keeping my Crohn’s-arthritis at bay.  By the way, is there any part of your body this disease leaves alone? Eyes, skin, guts, joints…Jeeze, dude, gimme a break!  I finished my last pill yesterday and am feeling the familiar deflated feeling one gets after stopping a dose of ‘roids.  I miss the energy it gave me, I miss not having this inflammation in my body.  I had a ton of blood work done before I set off south and east.  All my inflammation markers were really high-ESR and ANA.  I have appointments with a GI and a rock-star surgeon the first of November, but I can’t get into see a rheumatologist for a month. Fark.  I broke down and took Ibuprofen even though I’m not supposed to b/c of the tummy issues and because last time I took it, it made my legs swell up, but I just can’t take this!  You don’t realize how much you use your hands until you can’t use them.  My right middle finger will not bend at all which makes it hard to do basically everything-open doors, wipe my ass, you name it!  It is really swollen, red, and bruised looking.  My right thumb is nearing the same boat.  So far left hand is good and feet are okay (thank you Lord!!).  I’ve been swimming laps in our pool for much-needed exercise, and to try to keep my joints happy, but I am too wiped out today and think I might just sink to the bottom, so I figured a slow-typing blog was in order.  I’m thinking that Humira must have stopped working for me as it should be keeping arthritis at bay too,  especially with a double-dose of the stuff, and it’s soooo not.  Apparently I was a bad partner and it broke up with me without so much as a text or post-it.  Jerk.  Anyway, I’ll consult with my new GI in a few weeks and see what he thinks.  I don’t know if there are drugs enough in the world to reign in my Crohn’s at this point.  It’s a spoiled out of control superstar brat (think Lindsay Lohan) and it loves the limelight.  Meanwhile, I continue to prance around Dallas in my “Crohn’s Disease Sucks, Cure Crohn’s!” shirt.  And by prance, I mean lie on the couch and breathe.  I miss prancing.

UPDATE:  I have Lupus.  FML.

So…blood test results came back today. Yep, I have Lupus.  Hopefully it is medication-induced from a Crohn’s med. I’m taking and will go away when I stop it.  So, that explains the crazy painful arthritis and why my Crohn’s drugs weren’t helping it-they were causing it!  I’m laying here with a low-grade fever, covered in sweat contemplating my shit for luck and trying to count my blessings.  So, here’s hoping they can find another drug to control my Crohn’s that won’t give me yet another auto-immune disease.   I’m good on those for now, thanks.

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]]> http://www.jpouch.net/2010/10/20/body-suck/feed/ 0 “Ch-ch-ch-changes” http://www.jpouch.net/2010/09/30/chchchchanges/ http://www.jpouch.net/2010/09/30/chchchchanges/#comments Thu, 30 Sep 2010 18:21:17 +0000 Lizz http://www.jpouch.net/?p=2538 I think that’s how the song went…Anyway. Lots of those happening here! First off, I decided at the suggestion of my surgeon to apply for disability. My, there’s a lot of paperwork involved…Second, we are moving to Texas! In two weeks! My husband got a job offer out there that was just too good to pass up, so we are leaving Portland for what we hope are greener pastures. I’m looking forward to becoming involved with the CCFA there as I continue to fight back against IBD.

I returned last night from a trip to my home state of KY for a family reunion. (Just in time to take my sick dog to the vet for exploratory bladder surgery, and pack up our apartment.) I spent time with my mother, aunts, and uncles, and spent lots of time talking with one aunt who is an auto-immune brethren with lupus. She got diagnosed later in life, which is atypical, and nearly died from her first flare. We noted similarities in our symptoms, one being that our teeth were falling apart! When I go to KY, I always schedule a visit with my best friend, honorary sister, and dentist, Alex. She has a practice in our home town where she gives me the once-over when I am in home. Despite daily flossing and the twice daily use of my fancy Sonicare toothbrush, I have multiple cavities every time I go in for an exam! This has really surprised and upset me since I take such steps to insure my oral health, which is something I previously felt I had some control over. Prior to the last two years, I never had any significant oral health issues. Now I have 3-4 cavities every time I’m examined, my gums are receding, and I had a bony-growth in my jaw! Luckily, the growth was benign, as told to me by an oral surgeon Alex rushed me off to. (It’s so nice to have someone who loves you in charge of your dental care!) Anyway, after three hours in the chair, and three visits, my teeth are again good-to-go. I suppose my decline in tooth health upsets me for a number of reasons. The first being that I am really sick of my body continuing to fall apart despite my best efforts to keep it in tact. The second being that I never had problems with this before-my healthy teeth were something I could always count on. My insides might be rotten, but my chompers were strong and pearly white! Also, I think a lot of it is a vanity thing. When talking with people over the years about my illness, a “compliment” I always received was, “but you look so good! So healthy and pretty. Your skin is gorgeous, you have bright eyes…” Yada yada. Basically, “You look healthy and hot. You don’t look sick.” When talking with my aunt and mom I likened myself to a lemon sports car-I look good and shiny on the outside, but nothing runs quite right where it counts. Form, without function.
I suspect my teeth are decaying for a number of reasons, none of which I have much control over. Autoimmune diseases ravage your body and don’t allow you to absorb nutrients properly, so there’s one hypothesis. The other is years of steroid use, and the newest is my weekly (double dose) of a certain biologic medication. I’d rather end up with dentures than a hella bad Crohn’s flare, so I’ll keep shooting this crap into my body every Saturday without question. Even with all the drugs I am on, I’m still in a mild to moderate flare as revealed by my last scope. That’s okay, but it does make you realize how unfortunate our options for care are. It’s a gamble all the time. A currency exchange of side effects vs. disease symptoms. “I’ll give you four rotten teeth for bloodless shit.”

“There’s birth, there’s death, and in between, there’s maintenance.”-Tom Robbins, Fierce Invalids Home from Hot Climates

Anyway, on to the good stuff. I am excited about exploring a new part of the world. I am proud of my husband for being offered this opportunity, and I look forward to the new perspective of Texan doctors. I am grateful for my wonderful, supportive family, without whom I could not survive, and for my loving friends who take such great care of me-clinically and emotionally! I am glad my little doggie is able to have vet care. She has been my mini-nurse since I was 19, and I will do the same for her as long as I am able. Also, I am grateful for this blog! Grateful for the opportunity to connect with others dealing with this life, and motivated to get the word out and advocate for IBD patients. I think our efforts are working because I do notice a heightened knowledge of IBD out there. I notice more research being done, and I notice that fewer people look at me like an alien when I mention IBD…they recognize it! This is a huge step for us, but it also means there are growing numbers of the disease, which we need to reign in. Let’s all remember to do our part. It’s a very satisfying and I think, necessary thing, for patients to do something positive and feel like they are making a difference for themselves and their community.  So go brush your teeth and get out there and do something positive for your people!

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]]> http://www.jpouch.net/2010/09/30/chchchchanges/feed/ 4 “My Hole” http://www.jpouch.net/2010/08/26/hole/ http://www.jpouch.net/2010/08/26/hole/#comments Fri, 27 Aug 2010 05:20:10 +0000 Lizz http://www.jpouch.net/?p=2516 So, I went to see funny-lady Margaret Cho tonight. If you know anything about Ms. Cho, you know she does some killer, hilarious impressions of her Korean parents, and that she’s a little raunchy. She spent the better part of the evening talking about “her hole.” Her anus, to be exact. She started the show by telling the crowd how she’d lost her voice, had seen a therapist who told her to drink olive oil. This was causing the interesting side-effect of causing her to poo an “olive oil mist”. There were other “hole” related jokes, which I as a Crohn’s/J-pouch patient always appreciate. Not that we are very shy around here, but I realized that I hadn’t yet told you guys about my most recent physical therapy appointment for my hole. As I mentioned in a previous post, the crap-o-gram I had revealed that my anus (hole) doesn’t open properly when I try to poo. It spasms sometimes, which can be really painful, and my surgeon sent me to a very specialized therapist who deals with pelvic problems. She is the loveliest lady, really. She is professional, funny, and warm, and not at all awkward. You know as a GI patients, we are all used to having people’s fingers up our ass. If it’s not a finger, it’s a scope. So, when this lovely lady suggested that a “hole massage” might help loosen up my tense arse, I agreed. I told her I was basically up for anything to avoid another surgery. So, first, she had me get into child’s pose (all my yogis out there know what I mean) and she massaged my lower back, my buttocks, and, the area around my hole. The left side was tight and painful, and the massage did help some. She suggested going into the “inner sanctum” to see if it was more of an internal thing. It was. My hole spasmed on her hard core. She did some internal massage which was…interesting. I think it helped for a few hours or maybe that whole day. It just always feels like there is a pinch on the left side down there-a tightness that I can’t get to relax no matter how much I try.
Anyway, the adventure continues. As I continue to get my butthole molested, let’s hope I see some progress.
What I won’t do for a good poo…

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