J-pouch Life

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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