My Pouch Runneth Over/Cleveland Clinic, Part Trois

by on Tuesday, November 13, 2012 5:37
This entry is filed under: Coping/Support

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:

Post-scope goo

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:

Weeeeeee!

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.

xoxo,

 

Lizz

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27 Responses to “My Pouch Runneth Over/Cleveland Clinic, Part Trois”

  1. avatar

    denise says:

    November 14th, 2012 at 6:46 pm

    hey lizz. Dr. shen pretty much just diagnosed me with that new autoimmune NOD2 gene mutation disease. I saw him early oct. for tests and ileoscope. Had my jpouch excised last spring but have had continual problems with gut, arthritis, etc. Anyways, just last week I met with Dr. Shen and he said a genetics test he did showed I have 2mututation of that gene. He set me up with an appt. for his rheumy colleague he led the research/paper. I was pretty out of it, as had just had an EUA surgery with my surgeon a few hours earlier, so didn’t get a chance to really ask Dr. Shen about what he thinks this new disease really is/does to the gut and what treatments are. What did you learn?

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    Lizz Reply:

    Hey Denise.  He e-mailed me a PDF of the article. I’d be happy to fwd. it to you if like.  Currently, the only treatment he has is the same for the IGG4 pouchitis, Entocort, which I’m taking currently.  He told me the genes it affected and that it was genetically similar to Blau Syndrome, which I linked to in the blog.  I’ll try to figure out a way to link the article on here so everyone can see!  

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  2. avatar

    Mama Marian says:

    November 15th, 2012 at 6:47 am

    Yes, this is my daughter Liz.  And yes, it was hard for me to not go on this trip with her.  But alas, as she says she is grown-up and I have had to adjust to that!!  Not easy for a Mother who’s favorite line is “Don’t overdo”.  At any rate, I am so proud of my child who has so much more strength that I have and is so positive and so wants to help those who suffer with her.
    She is making a difference and that is my lesson from her.  We all need to make a difference in someone’s life.  Love and prayers for you dear Liz and for all those who suffer.
    Mama M

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    Lizz Reply:

    I think you have to be pretty darn strong to be able to support your child through an illness like this.  Especially as a single mother who was always by my hospital bed, rushed me to every ER visit, was there for every single surgery, and one who has managed to have a successful career and maintain her sanity while enduring the pain and frustration of watching your child struggle and suffer.  Don’t discount your immense contribution to my strength and positive perspective.  I love you, mama!

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  3. avatar

    Lizz says:

    November 15th, 2012 at 1:06 pm

    The article, “Dermatitis as a characteristic phenotype of a new
    autoinflammatory disease associated with NOD2
    mutations” is now linked in the blog. Just click on “Nod2 autoinflammatory disease” link before the Blau Syndrome link. Also, here: https://www.dropbox.com/s/zkfj8hl8bajvkt1/Dermatitis.pdf

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    denise Reply:

    hey liz. thanks. He gave me the pdf too. But I’m confused as to really what the treatment is. I have multisystem stuff going on. My pcp thinks its lupus (though not drug induced) dr. shen 1st thouught lupus, then he did the genetic test and told me to read about blaus before he got the results back. Well dead on he was. I failed the genetic test. I have so many of the characteristics they describe in that paper. Seems Im Igg4positive too. But I don’t have a jpouch anymore. Had that thing ripped out last spring. Shen set me up to see Dr. Yao (the rheumy guy who headed the study) in a few weeks. In the study they mention prednisone and sulfasalizine as treatments. Prednisione – NOT.. already have osteoporosis from that evil stuff for UC. And sulfasalizine.. im allergic too. Guess I anxiously await a new journey with a new autoimmune disease. Just when I thought it would be over after getting that jpouch ripped out!!!

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    Lizz Reply:

    Ugh, hang in there girl. I’m sure they’ll find more treatments as they find more info. The thing about steroids is, they work. I too despise Pred, but it was the only thing that ever got my guts calmed down. Of course, it caused about a billion more problems, and at some point you just have to decide what you can tolerate. I swore after I had the J-pouch surgeries that I’d never take it again, but when I had that horrible Lupus flare and couldn’t walk, I happily conceded.  I hope we get more, less dangerous options soon.  I just try to take solace in the fact that we are being treated by the dude who’s discovering this stuff. Hopefully the rheumy will have some good ideas. Loving, healing thoughts to you!

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    denise Reply:

    lizz.. thx for the kind words.

  4. avatar

    Doug Larimore says:

    November 16th, 2012 at 12:55 pm

    Lizz,

    Nice blog.  My memory is terrible these days and especially after I take a drug like Versed?  I like the buzz but there’s no way I could blog after doing the drugs.  I’ll be there a week from today.  Are there any food places you really like or spots that we just need to visit?  We’ll only be there a couple days but still plenty of time to find a few spots that we don’t have back home.
    Take care!
    dougl

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    Lizz Reply:

    Wellll…I had to edit this sucker about 10 times, so Versed was probably still hanging around. But thanks for the lovely compliment! :) We went to http://www.albatrosbrasserie.com/ which was one of the better dining experiences I’ve had recently. The prices are very reasonable for the quality of food and service. West End Market was fun too. Lots of good prepared foods there. We wanted to do the museums and Rock and Roll Hall of Fame, but the dang Dr.’s took up too much time 😉 When in doubt, eat!
    Best of luck and be sure to let us know how things go.

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  5. avatar

    Doug says:

    November 28th, 2012 at 7:47 pm

    Lizz,

    I’m back home now. I had a good trip to the Cleveland Clinic and had an examination by Dr. Shen…talked to him for a bit and he put me on a couple prescriptions: Lactulose and the B/O suppositories. Just got a couple emails from him the past few days…it looks like I have Mucosal prolapse. He has a plan for me to try and the drugs are the first step. I’m taking it slow to see how it goes. Let me know if you’re interested in following me on facebook or something? I might be nice to have someone to ask questions here and there. Anyways, I’m glad I went and hoping things improve a bit.
    Take care,
    dougl

    [Reply]

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    Lizz Reply:

    That’s awesome that you got to see him/got a diagnosis/got safe drugs! This is why I love Shen. Did you have any problems getting the B&O suppositories? Do you have gmail? We could always stay in touch that way/chat on gchat.

    [Reply]

  6. avatar

    Doug Larimore says:

    November 30th, 2012 at 3:56 pm

    Lizz,

    Sure… I’m dougl1965@gmail.com for gmail.  I kinda figured that I would have problems with the B/O prescription.  I went in to Walgreens and the gals face almost turned colors?   Then she passed it off to an older guy and he said “they don’t make these anymore…”  I told him that i just got the prescription within the last 7 days so someone should have something?  I called around and found 30 at another Walgreens.  That gets me started.  I do use Medco/Express Scripts too, I’m pretty sure we’ll go that route next time.  Today I think I finally got the suppository up far enough in to help out…I’ve had a good day!  So hope that means good things for me?  I’m very happy I went to Cleveland…anything to try to help me.  Appreciate your blog….you’re doing a good thing!

    [Reply]

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    Lizz Reply:

    Thanks! That’s really good to hear. :)
    And, I had the same reaction from local pharmacies. I have no problems going through Medco. Just remember you have to send them the physical rx (no call ins or faxes), and it can only be written for a month’s supply. It’s a big song and dance, but man, those things work! Being able to poop and not having levator spasms is teh awesome!

    [Reply]

  7. avatar

    denise says:

    December 3rd, 2012 at 4:21 am

    Lizz. I saw the rheumy guy who lead the study on the new NOD2 blau like autoimmune disease. He confirmed that I definitely have it. There now have 32+ people with it. They are trying to get more funding for further studies and also seeking funding to research treatments as there are no treatments for it now. He also questioned my 10+years of firm ulcerative colitis diagnoses. Now I am wondering about crohns as the NOD2 mutations are highly susceptible to crohns. He said I have to go to each specialist to get help, derm guy for skin problems, back to shen for the gut problems, etc. Do you know if shen mentioned any treatment when he discussed this with you? I am trying to get back into see him, but it will probably take some time. I thought this gut mess would’ve been over since I ripped out the jpouch.
    thx.

    [Reply]

    avatar

    Lizz Reply:

    Hi, Denise.

    Honestly, I need to do MUCH more research about this.  I would (ideally) like to interview Shen formally since most of the info I get is from my personal appointment time. I need to follow up with him about my NOD2 status since it’s been long enough to get the results.  I’m very interested to know what they are learning while studying this.  Again, since it’s so new, my thinking is that since we are blessed enough to be treated at CC, we’re getting the most up-to-date info, but so glad to have a forum like this to share info! Please keep us all informed of your progress and we will do likewise.

    Many blessings for good health, and best wishes always.

    Lizz

    [Reply]

  8. avatar

    jan says:

    December 8th, 2012 at 9:00 am

    Hi Lizz my name is jan and i live in rosedale in australia. i have just been reading some of the competes left on your page about j pouches, i am waiting to go into hospital to have a j pouch put in but after reading some of the things on your page i am scared now to have it done because i might end up having the same trouble as very bady seems to have after they have it done. I have a ileostomy at the moment and now i am thinking i might be better off staying with it ever those i don’t like it because i think people can smell it when i go out which isn’t very often, i stay home a lot because i am scare i might have a accident in front of people.

    Could you give me some idea watch it is like with a j pouch to live with do you have many accidents while you are out and if you do what do you do about it and what do people say about it, i hope you can help me even if it is a little i would be greatful for it thank you. jan

    [Reply]

  9. avatar

    Amy says:

    January 13th, 2013 at 4:24 am

    Wow.  Thank you for sharing the details of your hospital trip to the CC.  I have heard that the CC is one of the best to get treatment for GI illnesses.  I ended up going to Mayo in 09′.  
    Your doctor sounds like a blessing as it’s very hard to find doctors that are good communicators  abd also excellent at what they do.  Dr. Shen loves what he does… I can tell just by the things you wrote about hm.  E-mailing you 5 times … like you said “who does that”.  No one… that’s why he’s special and rare.  If you think about it, he thinks about his patients prior to seeing them.  You were on his mind…  That rad!! I would love to find a doctor that doesn’t just look at me as a #. Trust me, I have been through all of the GI clinics and have seen more than 8 Dr’s and haven’t yet to find one that I can trust and feel confident in.  For instance, looking into a patients family history to see if there are any genetic alarms per se IS important. I am not a good candidate for biologics and drugs that supress the immune system.  Colon cancer, melanoma and yup the T-cell lymphoma (you know what it says about lymphoma if you’re a research addict).   
    I as well, am a research nut.  Obsessed with knowing as much as I could about the disease, but I’m really not into the conventional treatments because they are 1) not safe for my body.  My chances of cancer risk is higher than most people, 2) they are too strong for my body 3) i’ve been allergic to 6mp and a list of 20 other meds… my body is fragile which I think I’ve always been sensitive since birth due to not making it full term in my moms belly.  I wanted out at 8 months and I believe our immune system is fully developed and ready for the world by 9 months, not 8.  I got sick a lot as a kid, fussy eater..  AnywayzzI can’t do harsh chemicals  because lastly my intuition has always said no.  my “gut” :) has always screamed no.  
    The one time I did go against my inner voice, my hair fell out a lot!! I did’t even feel that much better taking into consideration the risks .  By coincidence or by natural happenings of life, a situation arose where my dr. and I mutually thought it was best to get treatment at another clinic (it wouldn’t work there because of the constant rudeness with the nursing staff that I would HAVE TO interact with.  It was a blessing because no more Remicade garbage.  

    So how are you feeling .. oh look at that exactly 2 months from the day you posted this.  Has the flare/fire started to die down yet?  I sure hope so.  You seem like a very grateful and supportive person who chooses what your day will be like…. a good, positive day.  
    I really believe that people with chronic diseases are not only physcially strong to endure the painful episodes, but we have an extremely strong fighting mentality and we just wont be destroyed by IBD…. Not happenin.. because our willpower is through the roof.  We were born to be strong because of what we would have to face.  The discouraged, hopeless patients with our disease will be inspired and encouraged by just the way we live our lives, what we’ve faced and gotten through and by speaking the truth into their lives, that strong warrior spirit that we have will start to arise in them..  If they have a chronic illness, there is a warrior in that person too…  It just needs to be found and encouraged.
    I would love to read your research and this other type of IBD….I have to read more on this.  I have a list of things I have to research.  RIght now I’m about to post a BOMB article I found on PLOS about MAP.  I stumbled upon this research article that really surprised me by all the points that were brought up about the MAP bacteria and the link it has to Crohn’s disease (the possible main cause of Crohn’s).
    I’ll check out your home page because I really love to read about this stuff and learn somethig.  I’m such a nerd.  I actually found seminars from I THINK it was the CC.  dont ask me how i find this stuff lol.  But they are actual up to date issues discussed by a doctor to either his students or residents  and it was all filmed.  But I believe it was the CC.  Wouldn’t that be funny if Dr Shen was speaking about one of the topics.  hahha it is a small world.  

    Sorry for the book i typed … eeek.  
    Blessings to you for reaching out and sharing with the world.  Bye bye & have a happy Sunday. <3

    [Reply]

    avatar

    Lizz Reply:

    Thank you for the awesome reply! Please keep up with us and stay in touch :)

    [Reply]

  10. avatar

    dianne says:

    January 20th, 2013 at 4:41 pm

    I haven’t been on this site for a while because I’ve been in remission for about a year. I was researching surgeons to remove the colon and then my doctor in Mount Sinai Medical Center in new york urged me to try humira. I, too, was scared to take it but I decided to give it a try . Your blog brought it home the seriousness of this medication. I knew it but tried not to think about it because I’ve been feeling so good..back to work..back to yoga..starting to socialize again..you know…just being normal for a change. How long were you on humira ? Any advice for me. I can’t go back to the bathroom run every 15 minutes. I’m petified of the pouch. I’m still hoping for a cure but I know it’s a long way off. thanks for listening. dianne

    [Reply]

    avatar

    Lizz Reply:

    Diane,

    Glad to hear you are feeling better. That, of course, is the goal of Humira and it helped me for quite a while. As I said in my post, I am only recounting MY experience, not trying to scare anyone from trying a medication that may greatly improve their quality of life. I took it for about 2.5 years, but I took a double-dose for most of that time. My reaction was also significantly rare at 0.6% of the studied population. My advice to you is to do your research and weigh the risks and benefits. That’s what I did before I took it, and at the time, taking it was the right decision for me, one I made as a fully-informed patient with a doctor I trusted. Because I was aware of the side-effects (even the rare ones) I was able to get a diagnosis of Lupus and stop the drug sooner than I would have otherwise. Again, this is what I, and my best-of-the-best doctors think happened, but many will tell you that autoimmune diseases run in packs and I just happened to have Lupus too. My advice is to continue enjoying your life and feeling good, while continuing an awareness of your body and bringing any concerning changes to your doctor’s attention.
    Best,

    Liz

    [Reply]

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