Return from Pouch Paridise

by on Thursday, December 1, 2011 4:33
This entry is filed under: Coping/Support

Like a beacon calling to your consonant-shaped guts.

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

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

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

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

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

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

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

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

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

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

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17 Responses to “Return from Pouch Paridise”

  1. avatar

    Shawn says:

    December 3rd, 2011 at 7:37 pm

    Wow. As I read your message I was crying. I so hear you.  I am so inspired as I am waiting for January 3rd to arrive as I will be starting my work up at the Mayo Clinic. Have lost 5 years of my life, my career in nursing and so much time. The nausea, 18 trips a day to bathroom etc…have got to come to an end. Love your humor. Most of all the poop capsule. Thx for the inspiration

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    Lizz Reply:

    Thanks, Shawn :) It’s really nice to know the blog resonates with readers. Best of luck to you!

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    dianne says:

    January 8th, 2012 at 2:43 pm

    Reading your story was like reading my own bio. this website actually calms me down when I start getting frantic. I’m at the crossroads now and am in total fear of making the wrong decision. I’m seriously sending out an S.O.S. to anyone who can advise me. Diagnosed with UC (after a 2-year struggle with C-diff) in 2004. Been on all the medications: rowasa, asacol, steroids, remicade…the list goes on. They want to try humira next. I’m nervous about the side affects but i have decided to try it. I will be flying down to the cleveland clinic this spring to consult with a sergeon about having the colon removed. I am PETRIFIED! Please set me know what it’s like . I want the good, the bad and the ugly. I need soo desperately to talk to people who live day to day in this situation . I would apprieciate all the advise offered. Thank you.

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    Lizz Reply:

    Hey, Dianne. Glad you find the site helpful! First off, you are going to the best place for this surgery, so take solace in that. I had a three step surgery. The first was to remove my colon, get me off steroids. That one was easy, but I had a laproscopic with c-section, not open. Adjusting to the bag was tough, but the end ileostomy was much easier than the loop. I felt great after the first surgery. The second surgery, they made the J-pouch, I got pretty sick during my hospital stay there with a fever, etc. Had a blockage, loop ileo ran all the time and was watery and generally harder to deal with. Take down was the easiest. Of course, adjusting to the pouch takes about a year. I had lots of complications, but most of those are rare. Pouchitis is the most common and is easily treated with antibiotics in most cases. And, if you have any problems, Dr. Shen is the pouch guru, so he’d fix you right up. And back to having your surgery at CC, they have the lowest incidence of pouch complication and failure in the nation, so huzzah Cleveland Clinic! If you’ll read through some of the past blogs, a lot of our bloggers have what I think you are looking for. Good luck and stay mellow. :)

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    Tricia says:

    March 3rd, 2012 at 8:48 am

    It is so comforting to know that others out there are going thru similar health issues and that I am not alone. I do not in any means want to sound negative, but only to share my experiences. I actually had the jpouch for five years and never really adjusted to it very well. I had the constant burning and pain in the anal area an the occasional “leak” overnight, it was horrible. Eventually I got so sick that I ended up in the hospital w/a high fever and a fistula. To make a very long story short I ended up with a permanent ileostomy.

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    Brandi says:

    March 22nd, 2012 at 8:52 pm

    Hello,

    I am 3 weeks post take down surgery. I was so excited to get rid of my ileostomy only to develop a wicked case of pouchitis one week after surgery. I am on antibiotics but they have not kicked in yet. I have developed a fissure and find it so painful to go to the bathroom. I am worried because my doctor thinks  that pouchitis this early in the game means indefinitely being on antibiotics. I am so sick of being sick. Any suggestions or referrals?

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    Tricia Reply:

    Hi Brandi,
    So sorry to hear that you have been having problems. Don’t let that fistula get any worse, I tried to ignore it and deal with the pain and it finally worked it way out to being a huge lump near my tailbone and I ended up in ER where they had to lance it open an about a liter of fluid came out! Sorry to be gross but if this helps even one person then I will be happy. I hope your doctor can get you feeling better and healthy soon! Please keep us updated and sorry if I couldn’t be of more help.

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    Liam says:

    March 31st, 2012 at 5:18 pm

    Great read and sorry to hear of all your problems 
    Im from the uk, ive had UC for 7 years had emergency surgery then two years later the j pouch i also had complications in all 3 of the operations the main one was a 10 inch downwards and a 5 inch wide open wound for 9 months eventually healing from the inside up,painful for first 2-3 months the cleveland clinic sounds amazing would love to visit.
    Ive had pouchitis for 2 years been on the same anti biotics for nearly a year now 
    Metronidazole im not even sure they are for pouchitis what i do no is if i stop taking them 
    My pains get worst within 48 hours so there doin one thing right!
    I was just wondering what treatments everyone have used and been prescribed for pouchitis 
    Here in the uk we have no special centres for bowel disorders we have are surgeons but they are very busy and cant spend hours on google like me :) any suggestions would be very helpful and much appriciated
    Very sorry lizz about jumping on ur fantastic blog but felt like you would understand and maybe help 
    Thanks 

    Do you have any suggestions of what to try for pouchitis 

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    Lizz Reply:

    First off, don’t ever apologize for asking questions/sharing on here! That’s what it’s for :) I have taken a variety of antibiotics including Flagyl, Cipro (the standards), Levaquin, Augmentin, Xifaxan, and most recently, Tindamax. That seems to be the one Dr. Shen rx’s the most, so maybe ask about Tindamax. Also, he treats it naturally with lactulouse, which is actually a laxative (eek, I know), but the acidity of it is beneficial to the pouch. I have tried it, but not consistently enough to know if it’s of any real benefit to me. It’s just been too hard to take (big liquid bottle, tastes good, but have to take w/ food to avoid cramps, then I shit a lot). Still, worth a try!
    I should also mention that many patients find it helpful/necessary to rotate antibiotics. After a while, your body can become resistant so it’s helpful to switch it up once in a while. Xifaxan had the fewest side-effects for me.
    Also, if you get desperate, they have a lot of international patients, though I know getting there is expensive. They also do remote consults, so maybe worth checking that out! http://eclevelandclinic.org/myConsultHome

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    liam Reply:

    hi lizz thanks for the the comments about aplogizing means alot ive had no advice about UC or pouchitis i dont know anyone else with it so knowing i can speak on here is reasuring, im goin to mention the tindamax first to my surgeon, i like the idea of the pouch being acidic i dont think anythin i take in is acidic i cant have alchol on Metronidazole so that would be worth a try, ive only tryed a few anti biotics and i have been considering goin back to the bag so knowing that there is plenty more i can try is life changing thank you, if it comes to it i will definatly think about visiting clevland clinic sounds like Dr shen is awsome would have to do some saving but i will consider it if nothing else works ive wrote down all the tablets so i will let u no how it goes

    thanks for your advice and help lizz keep up the good work hope your pouchitis is gone by your next blog

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    Claire Reply:

    Hi liam hope you get this as just noticed the post is old. had emergency ileostomy then pouch created 3 years later as mine didn’t heal. also got pouchitis at mo with the worse tailbone pain ever! google brought me to this post. ibeen on cypro then on metrizidol but dont think they working as the tailbone pain an runs are back . what else did they put u on? I had all my ops in UK an am still intouch with my surgeon but have recently moved to France to complicate things further lol

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    Brandi Reply:

    HI Liam,

    My doctor is trying me on 3 different antibiotics on 1 month cycles. The first one was called Amoxicillin. The second one is Xifaxan and the third one will be Cipro. I am about to start the third one in a few days. The plan is to stay on one antibiotic for 30 days and then switch so my body doesn’t become resistant. So far I think it’s working…fingers crossed. I also use Canasa suppositories twice a day and proctofoam. I also take VSL#3 and a metagenics shake that is supposed to help with inflammation.  I hope this helps and I hope you feel better soon.

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    liam Reply:

    hi brandi thanks for the reply

    the 1 month cycle is gonna be mentioned in my next appointment being on the same anti biotics for a year is not healthy i tryed amoxcillin and they didnt work, but ive wrote Xifaxan and cipro down and will mention these they will be put in my file for future maybe it will help other patients he has aswel as options ,ive tryed the vsl#3 they worked at first but the next week they seemed to wear off il look into the metagincs shakes .

    all these options are so helpful i cant thank use enough for the advice i hope use feel better keep me posted how your pouchitis goes brandi thanks again

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  6. avatar

    dianne says:

    April 10th, 2012 at 3:51 pm

    You are a wonderful writer. Really, you should look into writing as a career. I, also, have had my life dramatically altered by this disease..not chrohns but UC. I finished graduate school the same month I was diagnosed and have never had the opportunity to use my education because of, well, you know the drill. I’m stuck in retail because of the benefits and availability of the bathroom. I won’t bore you with the details but let’s just say..it truly sucks. Mount Sinai Medical Center in NY has just put me on humira and it has worked with not so terrible side affects. I know that this feeling good is only temporary and that the medicine itself could kill me but It’s ok….after what you’ve been through I think you’ll understand…..I’ll take whatever happiness for whatever time I can get. Thanks everyone. You guys are all wonderful!

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    Lizz Reply:

    Thank you so much, Dianne! That’s a lovely compliment. I took Humira too, so I understand the fear and loathing. If you need someone to talk to about that, I’m obviously here. Writing has been a hobby of mine since I was a child, and there’s no better way for me to get out my pissed-off-because-I’m-sick angst. I’ve sort of considered doing it professionally, but have not put a great deal of effort into making that happen. I hope to make a push for a book about what it’s like to live w/ IBD/autoimmune diseases in a few years. I have one written, but I don’t feel like I’m done w/ this journey yet, so my excuse is that I’m still doing research 😉 In the meantime, this blog has been an amazing outlet for me and hearing how much it helps people is its own reward.

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  7. avatar

    DAVID says:

    June 23rd, 2012 at 3:44 pm

    hey guys read some of your post .just have some advice on UC. i just want to say UC saved me and almost killed me . cause in 1989 when me and my friends decided after graduating in 1988 and taking the summer off decided to sign up for the army. i got sick and my freinds went off to the gulf war in 1991. when they came back they told me be glad you got sick. we shared stories and im glad to say they all came back home safe.then in 1996 my mother died from gastrointestinal disease at the age of 68. i’ve lived with UC from 1989- 2002, taking meds daily and watching my diet which sucked, then i developed mega colon and had surgery ( a totalproctocolectomy).my doc said my colon was paper thin. my ph was 7.0 did’nt know what it really meant till nursing school .i received blood transfusions it felt like bullets going off in my stomach the night before sugerey . my doc was goning on vacation that friday ,Memorial weekend but heard about my rough night and came back that saturday morning and did the surgery for a permanent ileostomy .the doc’s consulted me about the jpouch , we talked about leakage and rectal irritations , wearing breifs ,came to a conclusion it was’nt for me.the doc’s collegue had a jpouch done and was’nt happy with it.i lived with a permanent ileostomy from May 2002 till Aug 2004 . then had a koch pouch done after learning about it in nursing school. i finished school and had surgey.i had complications with it an abcess at begining of the koch pouch. then went back to ileostomy after a few months . i lived with ileostomy again till 2007. then i tried the koch pouch again.im glad to say im doing fine now , no external pouches to deal with just a pad and water proof bandaide over my stoma that is flushed with my skin and about the size of a quarter . i drain with a 30 french catheter by inserting it in my stomaand irrigating with a 60 ml syringe, takes about 5 minutes, once or twice a day . its like having 2 stomaches pretty cool. my wife said she wishes she could do that then eat again cause it can be drained when u feel pressure at the stoma., if you eat more , but they reccomend small meals through out the day.then your empty and ready to eat again . you retain your fluids and food for better absorbtion in the pouch and no dehydration. i have not been on any meds since 2002 and eat what i want. the UC diet and being on meds daily was a struggle but had really good doc’s along the way. i’m so glad to say have’nt seen my surgeon since 2007. i really hope everything gets better for all of you. oh yeah!! they say in Austrailia they are curing UC with fecal implants,gross but who knew.it would’ve been nice to had a cure when we were sick. but oh well we are alive .

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  8. avatar

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    October 4th, 2014 at 12:02 pm

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