In perfect Cleveland Clinic fashion, it was an exhausting, informative, whirlwind week. Mom and my aunt, who have traveled with me to every damn hospitalization and major appointment since I was 16 were able to leave me to my own devices, now that I’m almost 30 (gasp!). I put on my big girl Depends, and flew up with friend and fellow colon-be-goner, Casey. Casey and I were introduced through Jackie Z. We initially met up in Big D, where we both reside, so I could give Casey some info about Cleveland. Then, low and behold, we bonded, like woah. She’s potentially sassier than me, a talented artist and do-gooder. And she has no colon. She’s quickly become one of my people and she was an ideal butt-buddy travel companion. We were both kind of amazed to travel with another sicky. Much like I felt when Jackie Z. came to visit me in Big D, we were all, “OMG, you have to poo right now too!?! That’s awesome! Let’s go together!” Who would think that simultaneous, frequent defecation could be that profound a bonding experience. But, having someone understand you, not feeling like a burden, just one of the crowd, is huge for the gutless/autoimmune ridden. We napped when we weren’t getting poked/prodded/examined or told we had some rare-ass disease and fit in fun when we had an hour to kill.
We left Monday for our flights to Cleveland. Two stops to be exact. I was fasting/doing clear liquids that day as my J-pouch scope prep. No laxatives are necessary because as soon as I deprive my belly of food, the bile acids go berserk and I have to poop all the time. We flew Southwest which is traditionally known for their laid-back flight attendants who aren’t robots and oft have a sunny disposition. For some reason, passengers, flight attendants, pretty much everyone on the plane but Casey and I were in grumpy moods. We were all, “Hey, we’re super excited about going to get tubes with cameras shoved in every delicate orifice, what’s your problem?” The later connections=mood improvements, which was good because I almost had to fight a flight attendant who wouldn’t let me go to the bathroom. When I asked politely to go after my sprint to the lavatory and was denied, I said, “Well, I honestly can’t hold it. I have Crohn’s Disease.” His response, a snarky, “I do too,” with an expression that implied, “I can wait, then so can you.” OR, “I don’t care what made-up disease you have, I’ll just say I have it and see if you back down.” MY response, a pleading, whispered, “Well, then you know I’m about to s&!# in my pants.” Doors opened, seas parted after that comment. So maybe he had Crohn’s, maybe he didn’t, but that statement worked and I didn’t have to whip out my handy-dandy, official “I have to crap more than you,” IBD medical alert card. He apologized profusely when I came out looking paler than when I entered and I happily forgave him.
On the second leg, we were seated by a super nice man from Akron who talked about his daughter’s ailments and surmised that Casey and I were traveling medical comedians. One of our favorite phrases from the trip: We’re here all week.
We landed around 8pm and we were pretty tired. We checked in, Casey napped, and I had some French Onion soup broth for dinner. I was rarin’ to go the next morning although I was somewhat concerned if Dr. Shen had made it back from China the previous evening. (I knew this because he e-mailed me five times while in China to let me know he was there, confirm Casey’s scope prep, etc.) Who does that!? That’s just Dr. Shen. He does it all himself, and is my J-pouch Jesus. After we checked in, a worried Casey held all my things in the waiting room, I got an easy IV (only at CC!), met my nurses (Irena & I can never remember the other one, I blame Versed.) Anywho, they are ALWAYS my scope nurses, they are so sweet and I lurve them. They wheeled me back, I saw Dr. Shen at his computer in the operatory and said, “You got a hair cut!” He said, “Yes, I have to try to look younger.” It should be noted that he looks no older than 37, but most certainly is based on his medical training. We chatted a bit about how I was feeling, then more polite small-talk, (as feels appropriate before someone shoves a camera up your ass). I asked him if China was work or pleasure and got the answer I expected, “It was both…This is Dr. ___ from China. She is here studying with me.” He’s had docs from other countries studying with him every time I’ve been. Awesome! (I get really excited about IBD and J-pouch education.) He went over my case history for their benefit, “Autoimmune pouchitis, history of UC/Crohn’s, efferent limb, stricture, drug-induced Lupus from Humira.” Then he told me he’d discovered yet another form of IBD. This one is called NoD2-associated autoinflammatory disease, and is genetically similar to Blau Syndrome, a rare childhood disease. He mentioned my skin rashes that preceded drug-induced Lupus and asked me to send him pictures of the rashes when they happened.
After that, I interjected, “Dr. Shen, I’m supposed to tell you that my mother says, ‘Hello, thank you’, and she loves you…And I love you too…” He giggled and asked, “Liz, are you youngest in your family?” I replied, “Um, yes…why?” His response, “Because I can tell. You a princess.” Then all the nurses and I cracked up. They said he says the same about them. We then talked about the lecture he was giving later that week at the annual GI Update: Treatment of Special Cases. All the nurses talked about how much they wanted to go hear it. Enter more medical small-talk, then I got my Versed+Fentanyl cocktail, coughed and surrendered. I could hear his notations, but I made an unconscious effort to not rouse myself and look at the screen like I did last year after I saw the blood and ulcers on the screen and flipped my shit. There was a level of anticipation that I didn’t have last year, however. I was expecting to be in a moderate flare as I’d been having night-time incontinence, incomplete emptying, etc. I heard him say “stricture” and knew that he was planning a balloon dilation if I had one based on our pre-drug convo. All this before 10am. Who needs coffee?
I guess all the blood and mucus I’d been harboring for a year could finally make an easy exit (and was no doubt “stirred up” with the scope, biopsies, etc.) because when I went to the bathroom after I woke up, this is what I saw:
Enter disclaimer here: Beware! Graphic photos of scope results, and a picture of my bloody mucus in the toilet follow. (Notice my nice TP nest.) If you are squeamish, easily offended, two things:
1) Skip this part. Close your eyes and scroll down really fast!
2) What are you doing reading my blog? Have we met?
But seriously, I think it’s important for people to see what we go through, for other IBD/J-pouchers to see they aren’t alone, and for someone to document all this.
Who’da thunk I’d be a bowel reporter in my off time? Here you go:
Liz’s Guts 2012
Anywho, I am a blast post Versed. Casey was SHOCKED! She was like, “Um, I’m not going to be like this, but party on, Wayne.” So we went to Au Bon Pain, got some safe post-scope noms, then killed time on the mall side of the clinic. There were some cool art pieces, and being the art nerd that I am, I wanted to take a gander. Here’s a pic of me REALLY enjoying the art in my goofier-than-usual Versed haze:
After that, we made a pass through the fancy clinic shops to kill time before my appointment with Dr. Shen. Exciting purchase: I bought a bra and got $10 off because I voted!
My appointment went something like this: We confirmed via scope that I was in a moderate flare of mystery IBD. There were ulcers, there was blood, there was mucus, there was inflammation. He asked if I was concerned about the ulcers and inflammation to which I questioned, “Are you concerned?” He said, “No, because it look the same as last scope. If it was worse, I’d be concerned, but it stay the same.” I agreed. He recommended I start a course of Entocort, which I took after the Crohn’s diagnosis. My mama reminded me it gave me killer headaches for a while, but as with everything, Dr. Shen involves me in the decision to put steroids into my body vs. “you must take this.” He suggested I try it for two weeks and if I can’t tolerate it, we’ll try treating with antibiotics. But, I’m gonna try to tough it out. Steroids work really well. It’s not Prednisone, in fact the side effects are very mild comparatively. Also, I’m not going to stay on it forever. So, that’s our game plan. That constituted about 10 minutes of the appointment. The remainder of the half hour to forty five minute chat was me quizzing him about this new form of IBD, and asking a few other questions related to studies I’d read in GI news. As always, he humors me and you can tell he loves that I ask these questions and have a genuine interest. Last year he told me pre-scope that I needed to go to medical school. If I thought my guts could handle the stress I totally would, but I know they totally can’t, so enter my plan for advocacy/chronic illness health counselor. He knows I blog, he knows I send lots of patients his way. We talked about my meeting Casey through my advocacy efforts to which he commented, “You are very popular in those circles.” I smiled and said, “So are you.”
Man, I really wanted to go to that lecture he was giving Friday…
Eventually we made it back to the hotel and rested. After that, we sauntered around the corner to 4th street which is a pedestrian-friendly food and bar area. We had a delish dinner at Chinato, and we may have picked up cupcakes prior to that.
Wednesday, Casey had clinic appointments with a surgeon Dr. Shen recommended, Dr. Hull, as well as a stoma nurse, Crina. That was a pretty intense appointment as Dr. Hull varies between motherly petting and surgical seriousness. Casey and I like to diffuse awkward situations like getting your stoma and rectal cuff examined by making inappropriate jokes. Dr. Hull seemed to enjoy it at times, but had no problems telling us to stop when she needed to get serious again. Casey got validation of her stoma pain and Crina, who is quite possibly the sweetest woman alive, was able to fit her with a superior bag.
That appointment lasted an easy hour and a half and before we knew it, we were waiting for Dr. Shen with his super fun intake nurse, Betty. We reviewed Casey’s symptoms again, scheduled tests, and got referrals to other specialists at Cleveland. Dr. Shen helped me schedule her with the surgeon, stoma nurse, and for scopes and clinic appointments with him, but with his and Crina’s help, we were able to get her in to see three other docs while we were there that week! This is why Cleveland Clinic rocks-efficiency and awesome staff who care and make things happen. When we left Casey’s Ipod charger in the clinic and completely forgot about it, Dr. Shen e-mailed me and saved it for us. This is the e-mail I got: Casey may leave her Ipad power charge in the clinic.
I have it…
I love him.
Needless to say, Casey got the short end of the probe this week because she got stuck in three holes and had an esophageal manometry test. I’m so glad we were there together to be each other’s support and comic relief. By Thursday we were infamous with the staff. ”Oh hey guys! How was the mall? Did you get some shoes?” or, “Where’s your friend?” Our usual response: ”Don’t worry, we’re here all week.”
By Friday we were getting worn down, but as I mentioned, we were good about, “Not overdoing,” in my mother’s wise words. We napped. I worked out in the gym some and did yoga in the room, all the while preaching to Casey to, “Drink more water! Do yoga! Vote!” Side note: It was pretty cool to be in Ohio on election night. And, that’s all I’m saying about the election! My political blog is purposely non-existent.
Friday Casey got worked in with two doctors that were on her recommendation list, but first she had the esophageal manometry. I was there to hold her hand and lordy loo, it did not look fun, but she was a trooper! The aforementioned CC efficiency allowed us an hour before we needed to leave for her appointments in the ‘burbs, so we called our wonderful driver-for-the-week, John, and asked if he could drop us off for a quick walk through of the West End Market. I nommed baklava, crepes (so excited, I love crepes)
Crepe noms at West End Market
and got a few goodies for stockings. (Be excited, mama!) Then we drove out to the ‘burbs for an appointment with a pelvic floor specialist who rx’d probiotics and yoga! When the word, “yoga” passed his lips I let out an exclamatory, “YES! Yoga!!! YES!!!!” I hate to say I told you so…
Then, back to the main campus for her last appointment.
We had another hour to kill before we saw the last doctor and decided to head back over to the shops. On our way across the skyway, we passed the Intercontinental Hotel on Campus. Casey stopped in her tracks and said, “Liz, this is the Intercontinental. This is where he’s doing the lecture.” Angels came down with harps and horns, and when the beautiful music of epiphany ceased, we walked up to the front desk to ask if Dr. Shen had spoken yet. I said, “He’s our doctor, would it be okay if we went in to listen to his talk?” The ladies chirped a resounding, “Sure! Right through there!” Then the angels came back, played another gig, I ran to the bathroom, dropped my phone in the toilet, rescued it, cleaned it, and hurried into the lecture room.
It. Was. AWESOME! I’m such a medical research nerd, so this was sort of my heaven. I was taking notes like a fiend on my much-coveted Doodle Pad that we picked up in the CC bookstore for a whopping $2. None of the other doctors thought twice about our attendance, probably because we were just as interested in the lectures as they were. The physician who spoke before Dr. Shen was lecturing on the various crappy meds used to treat IBD and the risks and benefits of using them. He spent a good amount of time talking about the statistics of biologics and explaining what they’ve learned since the initial research trials that earned them FDA approval. The stat that stuck out to me the most was the risk of death in Humira (2% of study participants) and the risk of drug-induced lupus OR, the way it’s worded in the drug literature, “a lupus-like syndrome,” (0.6%). I knew these statistics before I heard this lecture because I was scared sh!tless of taking biologics and did every possible bit of research, including reading the prescription inserts forward and back before surrendering to the needle. My dermatologist here in Dallas was one of the doctors who did the research studies for Humira and when we reviewed my health history and the theory that it had caused drug-induced lupus he asked, “Do you know how rare that is?” My response, “Hi, I know we just met, but I’m Lizz, weirdo medical wonder.” But, seeing those percentages side-by-side, I realized it was more likely that I would die than get lupus from the drug. Wow. Who would have ever thought I’d be glad for lupus! (Enter another disclaimer: I’m not poo-poo’ing Humira or suggesting that others not take it. It’s a great help to many people and was to me for a while. I am simply reporting on my experience and the theories of my physicians, and restating the study’s statistical information. The decision to take any medicine with a black box warning should be made carefully and by a fully-informed patient.) After that lecture, Dr. Shen gave an interesting presentation about the use of endoscopy as a method for treating stricture, pouch sinus, and fistula, and discussed its benefits as a preventative of more invasive surgery. I’d had my stricture dilated during my scope earlier that week, so I was a live, easier-pooping example of its benefits. (My butthole is now a loosy goosy 18mm, thankyouverymuch.)
I left before the Q&A session because I wanted to be present for Casey’s last appointment.
Hark! The 48th Annual GI Update!
Enter more, albeit less-invasive tests, more theories, more suggestions, then more blood work.
We did a quick overview of the trip after her last trip to the lab; what we’d discovered, what we hadn’t. The good, the disappointing, but we decided there and then to focus on the good and make a concerted effort to involve the easy suggestions in her life like probiotics, yoga, stress reduction. It was one of those revelatory moments where you have to surrender the victim state-of-mind, and become a warrior who chooses to focus on the positive and make the changes you can to improve your quality of life. It was one of the, “Yes, I want a name for what I have, but I realize that just because there’s not a name for it yet doesn’t mean it doesn’t exist, and it doesn’t mean that my life is doomed, it means I get to choose how to react to it, and I choose power.” Kind of awesome to be a part of a moment like that. There was lots of love, support, and friendship, and that makes me so happy.
So, the take-away: I tested positive this year for Igg4-associated autoimmune pouchitis this year. I may have the 2.0 version as well. Yes, I’m a research project. Yes, I’m still technically sick, but I choose to be thankful instead of bitter. I choose to be grateful that I have the ability and the opportunity to be treated by one of the best physicians in the world. I am blessed to be able to share information with him, and then with others who may not have the opportunity or ability to see him. Whatever stack of cards was dealt to me, I choose to use it to help myself, and try to help others. This is why my pouch runneth over. It also quite literally runs over when I crap the bed sometimes, but I choose to laugh it off, recognize the symptom needs treatment, treat it, wipe my ass, and go on with my life. I choose to listen to my body when it says, “Enough, Liz!” and I take each opportunity for fun. I choose to laugh at my butt disease, but take it seriously. And I’m so happy I do.
I love all of you and I hope you love yourselves enough to let the anger go and empower yourself. Jpouch.net is here to support and inform you in any way we can. If ya’ll need to vent, there’s a comment section. If you have questions, there’s a comment section. I still can’t figure out how to turn on my dang e-mail notifications, but I try to check in frequently so I can answer any questions you may have.
Someday soon, I’ll be official, but for now, thanks for reading.