This the end of the reign of the toilet in my life.
It sounds silly, I know. But thats only because you don't know what its like to have your whole life revolve around your access to the bathroom. Admittedly, my lot has been easier than those who suffer with ulcerative colitis or severe chrons disease. 20 trips to the bathroom a day is common if you're in a flare and some people go even more than that. But even 8-9 times a day sometimes urgently and getting up at least once every single night is rough too. I got so used to it sometimes I don't think I even really woke up. The bathroom was such a huge part of my life that toilet dreams were a weekly (sometimes nightly) occurrence. Dreams? Yeah. Of course plenty of the standard no tp, no clean seat, no privacy etc etc But some really crazy ones too lets see like.....
an outhouse guarded by wolves
a bunch of stalls at the top of a stadium with no doors
and my personal favorite - a toilet museum with no public restrooms
You don't forget dreams like those!
I stopped having them though - no more toilet nightmares, no more running to the bathroom right after a meal, no more fear of eating on a road-trip, no more hunting for a bathroom in stores, restaurants, malls, parks.
A couple of years ago I was out to lunch with some friends when one of them asked "where's the bathroom at I wonder?" and my other friend said "ask Katie, she always knows where the bathroom is." It's true, like I had an internal compass that pointed me in the right direction.
And the crazy thing is that this hold, this magnetic attraction that has kept such a hold of me almost my entire life I didn't even realize when that hold began to loosen. That is, until just a few days ago. I was on my way home from worship practice at church and just thinking about how things were going with my k-pouch and it hit me like a ton of bricks. I only intubated 4 times the day before. 7am, 3pm, 7pm and 10:30pm, that the other times I just went into the bathroom to pee. That knowledge began to settle down into my brain and well, I almost started to cry. Maybe that sounds silly to you, but then you don't know what its like to be a prisoner of the toilet and you can THANK GOD for that.
I'm released now. I love my k-pouch. Ask me if I care that I stick a tube in my belly -- I don't!!! I'm finally free. The throne is deposed and its control is broken.
Thank you, thank you, God (and thank you Dr Remzi too)
Monday, July 30, 2007
Thursday, July 12, 2007
Back to normal
I guess that's what I'll call this, my new "normal".
Once again I join the ranks of people who only see the doctor once or twice a year. I'm healthy enough to do just about everything that I used to, just still waiting for the stamina and energy to come all the way back. Its exciting for me and its strange all at the same time.
Strange because my new pouch requires a lot of micro-management for the time being. This next whole year will be an adjustment period as I try to work out my new "normal". My eating habits have changed drastically as have my bathroom habits. I'm still trying to figure out what foods I can eat and in what quantities. Fruits and veggies are still really low on the list because I just can't tolerate them. And right now I go to the bathroom because of what time is it, tell me if that's not strange. I'm still trying to get the hang of getting the tube in fairly quickly. Most of the time now, I can get it in in under 5 minutes and I guess that's good considering I've only been doing it 3 weeks. But since I'm a baby k-poucher little things still freak me out, a little blood here, and odd pain in my stomach.... these things will iron themselves out eventually.
I still haven't intubated at work, something I will be doing for the first time next week. I'm nervous and concerned and when I'm nervous and concerned my stomach muscles tighten and that makes it impossible to get the tube in. The longer it takes to get the tube in the more concerned I get. And the biggest tips for getting the tube in when it's difficult?? #1 Relax. Sure, I'll do that. #2 Put the cath in the freezer for 30 minutes. At work? No. #3 Lie on the floor while inserting the cath. Once again, at work? NO. I wouldn't lie down on my own bathroom floor. Back to #1 I guess.
If you think of me next week, pray that I can get the cath in easily.
What is my new normal? Well now it will include having a cath, bulb syringe and lubricant with me at all times. I'll keep a set in my car, in my purse, at home and at work. If I were to get food poisoning or some other emergency I'd have to intubate immediately and you can't exactly just stick a straw into your belly. I'm also considering getting one of those medical bracelets that alerts medical professionals about a severe allergy or medical condition because the type of internal pouch I have now is so rare that most people have never even heard of them. I need them to know who to contact about it if I'm unconscious.
And what does normal mean anyways?? The truth is I'll never be normal. No, I won't. I'm forever changed by the things I've been through, especially in the last 2 years. I'm not trying to make myself out to be something special or anything but the truth of the matter is I have NO idea what it is to walk through life with the most pressing concern at my next doctor's visit being my cholesterol. I don't know what it's like to have the bathroom be an afterthought because as long as I can remember access to the bathroom has always been my top priority.
I think I have an idea of what it must be like to be a survivor of some horrible accident. What I'm saying is, I've been through this huge and crazy ordeal and now its "over" (I hope) now I'm home and back at work and supposed to go back to doing everything I did before. The only thing is I don't feel the same. I feel shell-shocked I suppose. Like I just landed back on earth from some place else and no one around me has any idea what I've been through and no one is like me.
People say things to me like "don't obsess about my health conditions" or "don't let this problem define who you are". Are you kidding??? It's not just this last surgery that has shaped my personality and feelings, thoughts and actions its all the crap I went through on my way to having surgery. Like what? Well, in the last year and a half I've spent 21 days admitted to the hospital, that includes 3 surgeries, 4 outpatient procedures and 2 admissions through the ER. Twice while in the hospital I stopped breathing and had to be revived. I've had 1 lower GI x-ray series with barium, 2 CAT scans, 3 intestinal scopes (2 without sedation). I've had my stoma irrigated, I've had foley catheters and urinary stents and abdominal drains. I've had 3 five hour sessions of the drug Remicade, several dozen IVs and more blood draws than I can count. You can't go through all that and not come out different on the other side.
I can't pretend that all this didn't happen to me and I can't bury the past it has made me what I am. Right now though I kinda feel like a teenager trying to figure out who that is. I guess its kinda like coming out of the Army or prison. You've spent so much time just trying to survive its hard to go back to normal.
I guess I just need some time.
Once again I join the ranks of people who only see the doctor once or twice a year. I'm healthy enough to do just about everything that I used to, just still waiting for the stamina and energy to come all the way back. Its exciting for me and its strange all at the same time.
Strange because my new pouch requires a lot of micro-management for the time being. This next whole year will be an adjustment period as I try to work out my new "normal". My eating habits have changed drastically as have my bathroom habits. I'm still trying to figure out what foods I can eat and in what quantities. Fruits and veggies are still really low on the list because I just can't tolerate them. And right now I go to the bathroom because of what time is it, tell me if that's not strange. I'm still trying to get the hang of getting the tube in fairly quickly. Most of the time now, I can get it in in under 5 minutes and I guess that's good considering I've only been doing it 3 weeks. But since I'm a baby k-poucher little things still freak me out, a little blood here, and odd pain in my stomach.... these things will iron themselves out eventually.
I still haven't intubated at work, something I will be doing for the first time next week. I'm nervous and concerned and when I'm nervous and concerned my stomach muscles tighten and that makes it impossible to get the tube in. The longer it takes to get the tube in the more concerned I get. And the biggest tips for getting the tube in when it's difficult?? #1 Relax. Sure, I'll do that. #2 Put the cath in the freezer for 30 minutes. At work? No. #3 Lie on the floor while inserting the cath. Once again, at work? NO. I wouldn't lie down on my own bathroom floor. Back to #1 I guess.
If you think of me next week, pray that I can get the cath in easily.
What is my new normal? Well now it will include having a cath, bulb syringe and lubricant with me at all times. I'll keep a set in my car, in my purse, at home and at work. If I were to get food poisoning or some other emergency I'd have to intubate immediately and you can't exactly just stick a straw into your belly. I'm also considering getting one of those medical bracelets that alerts medical professionals about a severe allergy or medical condition because the type of internal pouch I have now is so rare that most people have never even heard of them. I need them to know who to contact about it if I'm unconscious.
And what does normal mean anyways?? The truth is I'll never be normal. No, I won't. I'm forever changed by the things I've been through, especially in the last 2 years. I'm not trying to make myself out to be something special or anything but the truth of the matter is I have NO idea what it is to walk through life with the most pressing concern at my next doctor's visit being my cholesterol. I don't know what it's like to have the bathroom be an afterthought because as long as I can remember access to the bathroom has always been my top priority.
I think I have an idea of what it must be like to be a survivor of some horrible accident. What I'm saying is, I've been through this huge and crazy ordeal and now its "over" (I hope) now I'm home and back at work and supposed to go back to doing everything I did before. The only thing is I don't feel the same. I feel shell-shocked I suppose. Like I just landed back on earth from some place else and no one around me has any idea what I've been through and no one is like me.
People say things to me like "don't obsess about my health conditions" or "don't let this problem define who you are". Are you kidding??? It's not just this last surgery that has shaped my personality and feelings, thoughts and actions its all the crap I went through on my way to having surgery. Like what? Well, in the last year and a half I've spent 21 days admitted to the hospital, that includes 3 surgeries, 4 outpatient procedures and 2 admissions through the ER. Twice while in the hospital I stopped breathing and had to be revived. I've had 1 lower GI x-ray series with barium, 2 CAT scans, 3 intestinal scopes (2 without sedation). I've had my stoma irrigated, I've had foley catheters and urinary stents and abdominal drains. I've had 3 five hour sessions of the drug Remicade, several dozen IVs and more blood draws than I can count. You can't go through all that and not come out different on the other side.
I can't pretend that all this didn't happen to me and I can't bury the past it has made me what I am. Right now though I kinda feel like a teenager trying to figure out who that is. I guess its kinda like coming out of the Army or prison. You've spent so much time just trying to survive its hard to go back to normal.
I guess I just need some time.
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