But you don't look sick

I've heard it enough, and for those people who don't say it I can see it in your face.

Its a blessing though, really, to have a disease where the symptoms are so personal I can hide them from the world. Because with crohns disease unless your emaciated because you can't get the nutrition you need, really you look fine. Most people wouldn't notice that you visit the bathroom 8 + times a day. They don't see the blood in the toilet. Don't know how much everything you eat affects you. Don't know how many and what kind of medications you're on and the side effects you deal with. Don't know what its like to have constant perianal drainage. And I have an ileostomy now so my symptoms are minimized.

Unfortunately though looks don't change facts. And this fistula is like my achillies heel. It seems so ridiculous to me sometimes that something so small could cause such problems, could be so difficult to fix - and in my case, unfixable. One thing is for sure and that is I can't continue on indefintely like I have been. Its one thing to deal with the draining when you think its temporary and the doctors will be able to end it. But I saw my surgeon and he's said there is nothing more he can do for me and he even had me get a 2nd opinion for the chief of colorectal surgery who said the same thing. He said its time to accept that we cannot fix this and move on with my life. So I'm headed back for more major abdominal surgery in May to have my j-pouch removed.

But you don't look sick! --- I'll take that as a compliment.

Adventures in Gastroenterology

You may be familiar with my adventures in colorectal surgery series, but this is an adventure that I had with my Gastro doc Dr Shen back in Nov 2006. It all started when I began to see blood coming out of my stoma. This was very unsettling for me as I'm sure you can imagine. So after watching this happen and getting some advice from my webboard at www.j-pouch.org I decided I had better notify my GI. I emailed my doctor and his response was to order me to come up to the clinic to have a scope done through my stoma. This scope is the same type device they use for colonoscopies it is a fiber-optic cable with a camera and light and they shoot you full of air to expand the intestine and see stuff. Now I had a scope done through my stoma before, it is not really painful, mostly uncomfortable because of all the air so I felt ok going up by myself. So I got checked in, had my backpack and walked back to my little pre-op area, I passed Dr Shen who was on the phone at the nurse’s station and he waved at me.
My nurse takes me to my little area and says "you don't need sedation right? Because it’s through the stoma?"
ME "right, no sedation"
There's 2 nurses, My nurse and this other nurse in training who walked up after this was stated and the N-I-T says "I'll get her IV started"
Nurse "No, she's getting scope through her stoma she doesn't need an IV"
So they close the curtain and I take of shirt and pants, just so poop doesn't get on my clothes and throw on a gown. Well I'm just tying the back and trying to shove my backpack under the gurney (in this area your stuff goes under the stretcher with you because you finish in a different place where you started).
Dr. Shen comes right outside my little area "I'm ready for my next patient. Is it Katie? She should be ready." Then to me, "Katie, are you ready?"
ME: "Yes almost, I'm just stowing my stuff. Am I gonna walk back?"
Dr Shen "No I'm going to push you!"
ME: "I'm really getting the red-carpet treatment today!"
He laughs and then he swings back the curtain and my nurse is there too with the N-I-T who says "Aren't we going to start an IV?"
to which all of us (Dr Shen, the nurse and me) say "NO"
So the nurse starts pushing me to the scoping room and Dr. Shen and I are chatting about the conference he was at and that N-I-T goes "shouldn't we start one though?"
Real Nurse "NO"
Nurse in training "Really? What if there's an emergency?"
Nurse: "NO"
ME: (giggling a little) "What kind of emergency?"
Nurse "We don't need an IV”
And at this point I'm totally rolling my eyes here. I don't think she would've been so eager to get her shot at starting one if she knew how bad of a stick I am :oP

So we get all situated in the scoping room and I ask Dr. Shen if he's going to look down towards the pouch as well as up since I think that’s where I saw the blood come from and once he confirms that I have LOOP ileo he says yes he will certainly do that.

Well he sticks the scope in and I'm totally digging this because it’s really cool to watch your insides on TV. But the amount of air is REALLY quickly making me incredibly uncomfortable and it is painful. Try to imagine the worst gas you've ever had then triple it. I'm starting to breathe harder and squeeze the bed rails.
So the Nurse comes over and she takes my hand and she's like "take deep breaths... that’s right, in through the nose..."
I feel like I'm giving birth. :oP
Dr. Shen: "I'm sorry, Katie, you're doing good. Small bowel looks really good no disease. Ok I'm gonna to try and go to the lower part."

And he does try but he's not having any luck because the lower opening of the stoma is really covered by my appliance which he cannot take off because obviously that would be a problem when I need to leave. I have an appointment to see the ET nurses an hour after my scope and I can't just sit around "au natural" (wee willy naked) until then.
So then Dr. Shen says "Ok, we're going to go through the bottom"
ME: "Um, really? Ah, because I'm a BIG CHICKEN" I realized though that I didn't have much of a choice because I can't have sedation because I have no one to drive me home.
Dr. Shen: "Its ok"
ME: "really? cause ah..."
But at this point Dr Shen has removed the scope from my stoma and I don't really have a say because I'm already being rolled onto my left side. I'm trying desperately to to not panic, And I notice the nurses DID NOT put my bag back on and now that willy is free of the scope and full of air he is spewing poo everywhere!
ME: "Hey!!!! we really need to put the bag back on!!"

Nurse "Oh yes, we need to do that"
Dr. Shen "ok, here we go"
ME: "OH, really? Umm, I…"
Enter scope - I'll spare you the detail except to say... EEK!
Actually, it really wasn't bad. I thought I would be miserable, and it was slightly uncomfortable but oddly enough NOT as bad as through the stoma ( I think he used a pediatric scope) And also I think it was largely due to the fact that now all that air had 2 exits - 1 my fistula (gross) and 2 my stoma.

Now I'm really trying to watch because this is my j-pouch which I really wanted to know how bad it looks. So I'm trying to see the TV around the nurse who has put the bag back on and is trying to clean me up. She turns around to do something at the counter and I move my hand and realize that my ostomy bag is ABOUT TO BLOW!!!!
It is completely filled with air - blown up like a balloon full to capacity and I squawk "HEY this thing is going to EXPLODE if we don't get it open now!"
Nurse "yes! I'm coming!"
I'm frantically trying to un-Velcro the stupid thing, but my left arm is pinned under my body because I'm on my side. Finally the nurse comes over with a giant pad of some sort and releases the Hindenburg.
Dr. Shen "Wow, your pouch is very narrow and constricted"
ME: "Narrow huh?" --- Relieved of the impending explosion of poo I can once again turn my attention to the video monitor.
Dr. Shen "That is because of the crohn's disease, and you have diversionary pouchitis but that is to be expected"
ME: "So just diversionary pouchitis? Pouch doesn't look too bad? So, if the fistula got closed and I got reconnected how would my pouch function be?
Dr. Shen "If you get hooked back up then pouch gets the nutrients it needs and pouchitis should go away."
Then he took a couple of biopsies of my pouch.

Then I notice out of the corner of my eye that there is a PAUSE in the flurry of activity the nurses have kept up to this point. I mean, really I'm a complete disaster, covered in poo because of the scope and the nurses forgetting to cover willy then the whole almost-exploding ilestomy bag incident. So the fact that they've STOPPED doing anything gets my attention, so I look down to see what the nurses are occupied with now and I notice something VERY ODD (Like this whole experience hasn't been insane enough already...)
I can see the light from the endoscope shining out from inside me ----- out of my stoma and into my bag!!! This is truly a stunning moment. My brain is trying to process that there is a light in my belly and I'm on the verge of hysterical laughter.

ME: "O my gosh!!!"
Nurse PAUSE "That’s the endoscope...."

DUH!! I'm not E.T. !!!

And I'm not looking at her but out of the corner of my eye I can see that her mouth is open (heh)
ME: totally laughing 'HOLY COW the endoscope!! That's hilarious!!"
Dr Shen (who up to this point seemed totally removed from every other odd thing that was happening) did seem to find this amusing too. :)

I know that this was an odd experience for the nurses even though they were VERY professional, trying to make it seem like this sort of thing happens every day there. But I know that they don't do a lot of stoma scopes maybe a couple in a month and the nurses are assigned a room and not a doctor so they cycle through upper and lower scopes. And I DOUBT very much that they do a lot of endoscopes on patients that have ileostomies! And I'm pretty sure they've never seen an endoscope light shining through a stoma!

Definitely one of my most memorable experiences!

Not a tame Lion

Well I'm sure that doesn't make sense to some of you but to me, it makes a lot of sense to me. I'll explain.

Really, it all goes back to the fact that I need surgery, again. And this will be my fourth major abdominal surgery and perhaps you're wondering why? After all, I don't look sick, don't act sick. How can a non-sick person need surgery? Well, I'll expound on that in another post but suffice it to say right now that just because I'm not "sick" doesn't mean I don't have serious problems that need addressing, and sometimes the best time to have surgery is before you're sick. But on to the Lion factor.

So for the last year and a half I've been dealing with the fact that I have big intestinal issues again and I'm in the hospital again and having surgery again and I'm looking at a future where I'll be even more different than every girl my age again. And I'm getting the total gamut of reactions, some people making like its no big deal, get over it. Some tell me I need to pray more for healing and have faith. Some people telling me I need to explore alternative therapies, some people telling me that I need to have a total natural and organic diet, some people telling me that God is trying to teach me something, some people telling me its just the way life goes, some people telling me sickness is not a part of God's plan. None of this helps me, and quite a bit of it actually hurts.

And I've been struggling with this so much and contrary to those people that think I either A - choose to be ill, or B - blow my medical problems out of proportion (neither of which is true) I HATE that this has happened to me. I hate it, and I would do anything in my power for it not to happen. But its not in my power. And no diet or positive thoughts, holistic medicine or even ignoring it is going to change anything. See, I think this is God's plan for me.

Step back! Is she crazy? God doesn't plan for stuff like this to happen to people, lets face it there is sickness in the world and when it strikes someone sometimes God intervenes and sometimes He doesn't, but he doesn't plan it into their lives. Are you sure? I'm not. I don't see God as someone who reacts, I see Him as someone who ACTS. I've been reading this book by Joni Earekson Tada called "When God Weeps" about dealing with suffering, and its really nailed down and clarified some things I've been pondering in my head and heart. It deals with all the tough stuff, you know like "If God is a God of Love why is there suffering on the earth?" But the most interesting thing about it is there is no apology for the actions and words of God in the Bible. Its clear that He acts deliberately and with purpose all the time. Remember Joseph? Spent like 15 years in prison? Talk about suffering. You think God just worked around those nasty brothers of Joseph or did He PLAN it? Do you think God just let stuff happen to Paul (beatings, shipwreck, personal illness) or did he plan it? Did God just allow Joni to hit her head on that dock and break her neck or did he plan it? Do you think Christian martyrs deaths are just an unfortunate circumstance of the time and God just chose not to act, or was it part of the plan?

See I don't think stuff happens and God thinks 'well I guess I'll just work around this' I think He has a plan for everyone and its pretty clear for me His plan involves me spending an enormous amount of time in the hospital. It involves me going through many painful and embarrassing procedures, getting stuck with a needle more times than I can count and having multiple major surgeries. Don't like that thought? Me neither. But I can accept that there's a lot more at stake than my personal comfort. I'm getting to the Lion part.

Did you see or read "The Lion, the Witch and the Wardrobe" by C.S. Lewis? There is an excellent illustration of God here, don't miss it. The Pevensie kids are at the Beaver's house and they're talking about Aslan the Lion and they're looking forward to his return. Lucy asks "A lion? Are you sure he's quite safe?" "Safe?" Mr Beaver replies "Safe? Didn't you just hear me? He's a lion, of course he's not safe. But, he's the King I tell you, and He's good."

So yes, I think God planned for this to happen to me specifically, and that doesn't really make me happy but it is something I can accept. And I may never know why, I actually believe I'll be lucky if I get to see some good comes of it in my lifetime. I may never know who's path I crossed, never know what people I made a difference to. And I'm not saying that I'm this stoic sufferer either because there's plenty of times I've been angry at God about this, and I'm sure there are more days in front of me. But if God can use my illness for His glory then I just hope I'm a good tool. So if you do pray for me, pray that I'm a willing instrument and that God will use me for His glory.

Maybe God is not "safe" but He's the King I tell you, and He's good.

Meet Willy (show and tell)

So I've talking about my ileostomy and stoma a bit and I realize that almost all of you out there have never seen an ileostomy and maybe you're not even quite sure what it is. So as today was happy wafer changing day I thought I'd take some pics and you can meet Willy my stoma.

Ok, so what exactly is a stoma?
Well thats the name for the portion of intestine that is brought through the abdominal wall and stitched to the skin. I've got my guts hanging out! You can think of it like a sock. Yes, I know, that sounds crazy.... but its easier to explain. Think of turning a sock half way inside out, then imagine that the portion where it begins to turn inside is the opening of the stoma and the edge is whats attached to the skin. Now you can push more of the sock out and just like that the stoma is supposed to protrude from the skin. Sometimes (usually when I've eating something particularly fibrous) the stoma retracts back inside (kinda freaky - huh!?!) I call it "burrowing" but most of the time he protrudes just like in this picture.


And yes, that is my midline incision you can see to the left of my stoma. Its actually pretty pale I think. I wear an ilestomy belt that pulls the appliance tight over my belly to help prevent leaking and because it feels more secure. The belt is tight though and it causes wierd indentations on my skin, particularly noticable on my scar because that tissue is much thicker than skin. So I'm not deformed - and yes, I am proud of my battle wounds! And my skin is PINK because I'm sensative but its not raw or sore or anything so its really fine.



Towards the lower portion you should be able to see a small opening, thats where stuff comes out. And when it is thick or if I don't chew my food well enough it feels funny coming out. The small intestine has no nerve endings so you can touch the stoma and I will not feel it, but it is pulled through my stomach muscles and so when stuff tries to squeeze through there I feel it. The stoma is a bright red because it is full of blood vessles and therefore it also bleeds easily. It also is always wet because the bowel secretes mucos naturally. I always think of my stoma like a stewed tomato! Of course that does dampen my desire for stewed tomatos....

Well once I get my skin cleaned up and dry I put on a new wafer. The wafer has adhesive on the bag and I cut the hole in the center bigger to fit snugly around my stoma. I place the wafer over the stoma and the bag then clips to the wafer and PRESTO I'm ready to roll.







And thats it.
So, now you know what a stoma is, and what my ilestomy looks like.



You've just earned a 1 CME Credit in Enterstomal Therapy - Congrats! :)