tag:blogger.com,1999:blog-55478072011-07-14T16:24:33.362-05:00colitisblogA blog dedicated to discussions about ulcerative colitis, and other related maladies.Chadnoreply@blogger.comBlogger791100tag:blogger.com,1999:blog-5547807.post-1093095594728221072004-08-21T08:39:00.000-05:002004-08-21T08:39:54.726-05:00A year and a half later: I just found the file where I kept my old colitisblog posts while I was cleaning up my laptop recently. I found myself reading and rereading the entries. I’m really glad I kept this journal – it’s made me remember a lot of what I was going through. And I guess this shows some progress I’ve made: I’m able to look back on things for once. I am no longer in the middle of Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1067877510937684472003-11-03T10:37:00.000-06:002003-11-03T10:38:29.386-06:00The second surgery: Well, the second surgery is over with, and I'm recovering well. It's the fifth day after, and it looks like I'll be going home this afternoon. This time was much easier than the last: I just took a shower this morning, and I was able to do it with ease - and I didn't look emaciated and withered like after my last two surgeries. The shower felt good, like an actually showerChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1067153182469523812003-10-26T01:26:00.000-06:002003-10-26T01:26:21.970-06:00On friends with ostomies:
One thing that I sometimes forget is that most people with ostomies have them because of cancer, a frequently fatal illness, and not IBD, which is comonly survivable. So its not all that unexpected when I go to UOA meetings that someone has passed away, or never even lived long enough to come to a meeting. Or someone has had a recurrrence of cancer, and is undergoing Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1067014160575384762003-10-24T11:49:00.000-05:002003-10-24T11:49:19.953-05:00Susan - I'm very sorry to hear about your cat. My cat, Cleo, also suffered from IBD (we put her to sleep in January).
I wonder if there's some connection here.Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1066604647662033892003-10-19T18:04:00.000-05:002003-10-19T18:04:07.766-05:00Pets and colitis. My cat has colitis. Now why would my pet have to suffer? Is it fate that at least one individual in the house has to have an autoimmune disease. If that is what it is. Maybe she ate a bad bug....
Ever notice that when things are going well, you don't have much to say, but when they aren't all sorts of things come to mind.Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1066323053978615602003-10-16T11:50:00.000-05:002003-10-16T11:50:53.416-05:00The Fan:
I, while living a couple hours from Green Bay, am an avid Packer fan. Not the kind that wears a cheese head, or that has a big bear belly and paint a "G" on it for games....but I do know where most players went to college, most of the players numbers, and quite a bit of history of the team. I also have been following them since they were horrible about 20 years back. As most people Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1066270320653147552003-10-15T21:12:00.000-05:002003-10-15T21:12:00.636-05:00The Cubs: Tonight I’m trying not to watch the Cubs game – a critical game seven, winner-take-all affair. It’s the most important game of the season (up to this point; and if they lose, it will be their last game). And this season, because of my surgery and being at home with a TV, I’ve been able to watch nearly all the games the Cubs have played. Why am I not watching tonight?
Well, I’ll Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1065034567270322382003-10-01T13:56:00.000-05:002003-10-01T13:56:07.423-05:00Letter to Tom: Here’s a letter I’m probably going to post on the UOA website, in reply to a post by Tom about dating after having an ileostomy.
Hi Tom,
I’m in kind of the same situation you are – 28, just had my colon taken out. My ileostomy may only be temporary, but who knows how these things turn out. Anyway, here are some things I think about when I think about dating, etc.
The first Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064961970671275602003-09-30T17:46:00.000-05:002003-09-30T17:46:10.203-05:00Exercise: I haven’t been exercising much lately, but yesterday I started to get a little more serious about it. For the past month or so, my lack of physical activity has probably been due more to being in a psychological funk, than to my being out of shape. That is, I could have started exercising earlier, had I wanted to.
When I met with my surgeon last week, I asked him about what I shouldChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064607355188242132003-09-26T15:15:00.000-05:002003-09-26T15:15:55.203-05:00Experiences: Rick’s post (below) about “complications” made me think about the time leading up to my surgery. I was never really confronted with a “do or die” moment. In fact, the first time I was in the hospital (in early March, receiving IV steroids) my doctor allowed me to be discharged because, in her words, “my blood count was better than hers.”
To be sure, I wasn’t doing well. I was Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064553629811656452003-09-26T00:20:00.000-05:002003-09-26T00:20:29.670-05:00On complications:
You either have them or you don't; it’s like rain. The weatherman says there is a 40% chance of rain today (well, not really, I live in the desert, but lets pretend). At the end of the day it either rained or it didn't.
In 1998 I met a quite extraordinary young woman. She was 28 and had Cystic Fibrosis and atypical diabetes (which meant that it was very hard, if not Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064426290686347302003-09-24T12:58:00.000-05:002003-09-24T12:58:10.020-05:00Complication Scare:
I remember the day quite vividly when my surgeon came into my hospital room and discussed complications of the surgery. He had his work cut out for him as I had stated on about 100 occasions that there was NO way I'd ever have this surgery. It was just the night before our discussion that I found out that it was either the surgery or death for me. He sat down on the corner Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064366449314339112003-09-23T20:20:00.000-05:002003-09-23T20:20:49.163-05:00Numbers: Well, I’ve gotten two big numbers in the past few days. The first is the date of my next surgery: October 30. The second is the bill remaining from my last surgery. I won’t give the number for that (that would be unseemly), but let’s just say it’s large. It’s more than I anticipated I would have to pay for three years at law school.
I had a visit with my surgeon yesterday. I can’tChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064289635624419152003-09-22T23:00:00.000-05:002003-09-22T23:00:35.760-05:00Ok, I just had to run and post this really quickly. I will preface this entry with my second assumption that the world is full of a majority of ignorant people. I was just flipping through the T.V. because I just finished my homework for class tomorrow night, and I stopped on Comedy Central on this show called "Tough Crowd with Colin Quinn." I don’t know why I stopped, but I usually like most Emilyhttp://www.blogger.com/profile/09081084675957337738noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064287970375557842003-09-22T22:32:00.000-05:002003-09-22T22:32:50.053-05:00Emily - I have never heard of a surgeon knowingly doing a j-pouch on a Crohn's patient because of the high chance of recurrent disease in the j-pouch. I would really try and find out why they think it would work in your case.Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064198738033010072003-09-21T21:45:00.000-05:002003-09-21T21:45:37.543-05:00Ok, now to talk about a possible ileostomy reversal.
I want it. I want it bad. Don’t get me wrong; I am perfectly fine with having an ileostomy. I’ve had it for almost 10 years. But, I can’t seem to shake the idea of having a flat tummy. (Ok, maybe not flat unless I lost some weight, but sans plastic bag.) And, I can’t say that I want it so I will look completely "normal" again, because Emilyhttp://www.blogger.com/profile/09081084675957337738noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1064039266874895802003-09-20T01:27:00.000-05:002003-09-20T01:29:53.280-05:00On inspiration and staying up late:
I keep wanting to post, but then realize that its late and I have to ge to bed. And blast it all, its happened again!
I had dreams about running after my colectomy. I had come home after a month in the hospital on IV prednisone, having lost 30 pounds (which made me 87 pounds, light, even for someone 5'0"), and all my muscle. I had to set up a chair halfwaySusanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063918388180276272003-09-18T15:53:00.000-05:002003-09-18T15:53:07.593-05:00Rocky and Bart: Gee, thanks Rick - I was saving Rocky II for after my second surgery (and Rocky III for after my third: see the pattern? My movie book says after Rocky III the movies sorta go downhill).
Anyway, Emily's post reminds me of two great Simpsons' moments, which I thought I'd share.
Simpsons moment one: Bart gets some sort of contagious disease, and Marge takes him to see Dr. HibbertChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063894767617678942003-09-18T09:19:00.000-05:002003-09-18T09:21:27.956-05:00Hello Emily!
I throughly enjoyed your message as well! Quite inspiring....I find that young people with IBD are what motivate me the most. As ill equiped as I was at 24 when I had all my surgeries and sickness, I couldn't even BEGIN to imagine doing that as a child! Being a very short person, children were ruthless enough teasing me about my height....I don't know how much else I could have Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063859218126335342003-09-17T23:26:00.000-05:002003-09-17T23:26:57.920-05:00Hello Chad, Rick, and Susan - nice to be included in this excellent blog. I wish I had had something like this when I first got my ileostomy.
So, I guess I should start with a little history of moi. I am 24 and was diagnosed with Crohn's at the tender age of 12. I had a rough three years, and then when I was 15 after all else had failed, I had surgery to remove my colon and get an ileostomyEmilyhttp://www.blogger.com/profile/09081084675957337738noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063849384667635432003-09-17T20:43:00.000-05:002003-09-17T20:43:04.380-05:00Running: Watching baseball these days, it amazes when I see guys sprinting to first base – it looks like they are doing something magical, as if they were flying. I didn’t used to see things this way; only after my surgery, when I’m no longer running, do I see running as something wonderful, transcendent. I imagine that’s because I haven’t really run since January, when my colitis broke out Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063757073786951182003-09-16T19:04:00.000-05:002003-09-16T19:04:34.060-05:00A brief thought: I guess there comes a time (I wonder if I may be reaching it) that having one's colon out feels less like an illness, and more like an inconvenience. There's a big conceptual difference (for me, at least) between those two things -- from feeling sick to feeling inconvenienced.Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063628889592533002003-09-15T07:28:00.000-05:002003-09-15T07:28:09.566-05:00Anniversaries: Well, today's the 5th month anniversary of my discharge from the hospital. And last week was the 2nd month anniversary of this blog! I have to say, I didn't think we would last this long. Nor did I think we'd have so many members -- me, Rick, Susan, and now I'm pleased to welcome our latest blogger, Emily, who should be introducing herself soon.
Thanks everybody! Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063387925612402562003-09-12T12:32:00.000-05:002003-09-12T12:32:05.623-05:00Good message Susan!
In reply to some of Chad's recent messages...
Here's a blog about what I consider being "In the eye of the tornado": (fyi...after reading this one, it isn't overly inspiring, so I apologize ahead of time)
I think that the time right before or after a surgery, or between surgeries therefore, is not a good time...to say the very least. It was hectic, depressing, overwhelming,Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063246806313940872003-09-10T21:20:00.000-05:002003-09-10T21:20:06.290-05:00Having a colectomy was not a choice for me. It was something that was done to prevent me from dying. I don't think that anything would have made me choose it if there were any other alternatives. Having the j-pouch was presented as the best quality of life I could have. At the point where I consented to it I really wasn't coherent or capable of making a decision.
Of course my quality of lifeSusanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063233622659591972003-09-10T17:40:00.000-05:002003-09-10T17:40:22.603-05:00Advice: On the UOA “young adults” message board, there’s a post from a Melissa, who’s suffering from crohns or colitis, or something like that. Anyway, things have gotten pretty bad, she’s gone through the run of drugs and nothing’s been working, so she asks: should I have surgery? Most of the posts in reply to Melissa have been of the “yes, go for it, it’s the best decision I’ve made in my Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063233587495536412003-09-10T17:39:00.000-05:002003-09-10T17:39:47.440-05:00Looking back: It’s been nearly six months since my surgery, and I’m wondering: how has it changed me? Here are two things I thought might happen, given what I’ve read about other people’s response to traumatic events in their lives, especially medical ones.
First, they see life as more precious, more fragile than before, and they vow to live life in the fullest because of this realization. NoChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063123699755401492003-09-09T11:08:00.000-05:002003-09-09T11:08:19.950-05:00Other people: Last week, I talked to a couple people who’ve been through the same surgery I’m planning to have – the creation of a loop ileostomy, and then the reversal. They also had it done at the same hospital I’ve been going to, though they had a different surgeon (this makes me suspicious – why wasn’t I given the names of those who had the surgery done by my surgeon? Are they all dead now?Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1063123679585491242003-09-09T11:07:00.000-05:002003-09-09T11:07:59.650-05:00Two types of problems: I’m flipping through this interesting book, called “The Patient’s Ordeal,” by William May. He makes what I think is an important distinction (a distinction I think I’ve been wrestling with, though without having the right terms to put it in), and I’ll just quote in full what he says:
At the close of a lecture on a serious issue in American life, an undergraduate arose toChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1062528874584705472003-09-02T13:54:00.000-05:002003-09-02T13:54:34.463-05:00Parents are great! I had my folks play a full-time roll in my recovery. I even had to have my mother change my bag and face-plate for me until I got used to it. My Mom cooked me whatever I wanted (so I would gain weight), and she helped drive me where ever I needed to go. If I wasn't in such a hurry to get back to Wisconsin to see my lady, I would have been happy staying with my parents for Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1062453344318996382003-09-01T16:55:00.000-05:002003-09-01T16:55:44.173-05:00Another collapse: I made another brief trip yesterday, to visit a friend in Wisconsin. I felt a little headachy before I set off, but I thought that might go away. It didn’t. This morning I woke up with a pounding headache, one of the worst I’ve had in a while – and Tylenol couldn’t make a dent in it. I had planned to stay with my friend most of today, but I had to retreat this morning and Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1062119971642459352003-08-28T20:19:00.000-05:002003-08-28T20:19:31.703-05:00Support grouping: I went to my first meeting of an ostomy support group yesterday. I felt pretty depressed afterwards, but today I don’t feel so bad. I’ve pretty much made up my mind not to return to the group. It’s hard to be a member of a group whose defining characteristic is that all the members are sick in a certain way. The goal of the group then becomes something like coping, rather Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1061956096998369352003-08-26T22:48:00.000-05:002003-08-26T22:48:16.893-05:00On Limits:
There are ostomates who have run triathlons, including the Iron Man in Hawaii. There are ostomates who run marathons. There are ostomates who rock climb. There are ostomates who play hockey.
And there are ostomates who can do none of these things because of age and ill health.
There are non-ostomates who do none of these things.
There are limits that are imposed by the slings Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1061955283789801772003-08-26T22:34:00.000-05:002003-08-26T22:34:43.736-05:00Ode to a J-pouch
I wish that it had worked for me
But it isn't really trouble free
Living with an ostomy
Wasn't my cup of tea
I thought "inside" plumbing would be cool
I was stubborn as a mule
boy was I ever a fool
For chronic pouchitis
Did not really excite us
And Fistulas and Abscesses
Are really the crappiesses
From colectomy to ostomy
was 13 surgeries (approximately)
Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1061865485324049492003-08-25T21:38:00.000-05:002003-08-25T21:38:05.330-05:00Limits: Is being subject to new limits, like the limits that come with an ileostomy, necessarily a bad thing? A lot of this, as with so many other things, has to do with your perception of what the limits are, and how they function.
Jon Elster, a famous social scientist, talks about how limits might be good things. For one, not having limits, and having to choose over an unlimited set of Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1061654875246527912003-08-23T11:07:00.000-05:002003-08-23T11:07:55.293-05:00Exhaustion: I just got back from a brief trip to visit a friend, my first real “vacation” since I’ve had the surgeries. Things went well, in the sense that I got to see my friend and his wife, and in the sense that I didn’t have any major ostomy related embarrassment. My bag didn’t break, for example, nor did it leak. So there was no crisis of that kind.
But there still were a series of Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060994063102883732003-08-15T19:34:00.000-05:002003-08-15T19:34:19.086-05:00“Thus I willed it.”: I was thinking this morning about something that Nietzsche says somewhere, about turning every “it happened” into a “thus I willed it.”
I was thinking about this because I resent the fact that my big struggle, the big painful experience of my life up to this point, wasn’t something that I chose, but rather something inflicted on me from the outside. It’s not like I said,Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060881856405378002003-08-14T12:24:00.000-05:002003-08-14T12:30:09.206-05:00I had another problem with a posting yesterday, that wouldn't post, or allow me to save it. So, I decided repost today with some other additions I thought of over the night.
I wanted to give a brief warning of post J-pouch surgery. I was hoping for the magic wand to pass over me in my reversal surgery, and I'd be like new. Didn't work quite that way. It took a bit of getting used to....Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060822464443741592003-08-13T19:54:00.000-05:002003-08-13T19:59:06.130-05:00On being Angry:
I was angry for years. Sometimes I am still angry. Normal in time becomes what you are, not what others are. What doctors don't tell you, and what you don't get from movies and TV, is how long it takes your body to recover from surgery after a long illness.
It gets better, it took a few years for me, but your gut adapts, more water is extracted, constency gets thicker, Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060704658822094482003-08-12T11:10:00.000-05:002003-08-12T11:10:58.840-05:00Qualification: An e-mail from co-blogger Rick has shown me the need to qualify what I said about consolation, below. I think there's a real difference between consolation given by someone who has colitis and an ileostomy (or a related ailment, or even someone who's been through major surgery), in other words, consolation by someone's who been there, and someone who hasn't. Those who've been Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060694262549931382003-08-12T08:17:00.000-05:002003-08-12T08:17:42.603-05:00Being angry: Yesterday I was thinking about something one of my doctors told me, before my surgery, but when I was in the hospital nonetheless, trying an IV with another drug which was doomed not to work. I asked her what it would take for me to go back to my old life, with running and everything, and allow me to go to law school in the fall (this was early summer 2003). She said, “If you wantChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060664169890565392003-08-11T23:56:00.000-05:002003-08-11T23:56:09.753-05:00On new insights:
Chad - exactly. I had never realized exactly why consolation is not consoling. But it trivializes. Its meant to, because however bad it is, someone else has it worse, so what are you complaining about?
There is no way to make things good, only to accept them by whatever means suits you. For some it is inspiration from others (and this is admirable), for others, faith in Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060566797343810672003-08-10T20:53:00.000-05:002003-08-10T20:53:17.340-05:00More on consolation: I think Susan’s stolen my thunder here. The last few days, I’ve been wondering what consolation really would work for me. The answer, after reflecting a bit, is a lot along the lines of what Susan says. I’ve been benefited the most by people who don’t try to say something, anything, just to fill up space. The best have been those who say, honestly, that they don’t know Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060314650561980182003-08-07T22:50:00.000-05:002003-08-07T22:52:13.416-05:00Quick Blog.
Having read Chad's previous post - I don't think I have ever seen this disease as a positive experience. I often feel robbed of large portions of my youth. But you have to gird your loins (whats left of them) and keep going. Or not. I was sort of suicidal after my colectomy, not that I wanted to kill myself, but that I just never wanted to wake up again and face another day of Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060268581713118842003-08-07T10:03:00.000-05:002003-08-07T10:03:01.666-05:00Hey, finally someone who is in the same vertically challenged heighth bracket that I am in! I'm 5'2" (with my Doc Marten shoes I get another inch or so). I'm liking you more every time I read your messages :) I may have mentioned this before, but the topic of the Smurfs brings back some great hospital bed memories. I recall having trouble sleeping and watching a Smurf marathon all night longRickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060228472607711892003-08-06T22:54:00.000-05:002003-08-06T22:55:11.526-05:00Here I sit, with a glass of wine at my side, and a glass of wine in my belly and contemplate the fact that, at 5’0” and 110 pounds I am well over the legal limit to drive – on the physical highway – but absolutely able to drive on the information highway.
The thing no one tells you is when you are diagnosed with UC is how depressing it is to not be able to get it under control, and have to be Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060187698993627852003-08-06T11:34:00.000-05:002003-08-06T11:34:58.900-05:00**Warning** - this blog is ALL over the place!
I'm reminded of a comical quote that my friend has used: "Hard work pays off in the long run, but laziness pays off NOW!". He's also known for saying "I'll get plenty of sleep when I die"....but that is beside the point. I can't say much more about recovery that hasn't been said a 1000 times from my parents...the most annoying line, "In time, it Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060130411563328872003-08-05T19:40:00.000-05:002003-08-05T19:40:11.470-05:00On refusing to be consoled: Boy, next to Rick’s manic cheerfulness and Susan’s droll wit, I risk turning into the resident Grumpy Smurf on colitisblog. Anyway, I was reading a few things about the symptoms you get after having your colon out (or, indeed, after any major surgery), and one of them really struck me: it says you can suffer from “general malaise.” This sounds odd to me as a medicalChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1060105103482734182003-08-05T12:38:00.000-05:002003-08-05T12:38:23.443-05:00Great blog by Susan below! Oh the joys of waking up with a leak in your appliance : )
I just wanted to cover a quick topic from Chad's most recent posting. He made some great points and I wanted to give my point of view on them. I'm on a lunch break, so I have to hurry this up. My point of being inspired was not so that I could return to a "normal" life. It was based on the fact that my Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059963596153161452003-08-03T21:19:00.000-05:002003-08-03T21:19:56.193-05:00Back from Holiday with my sister. It always brings up things from the past. She was diagnosed with UC about 18 years ago - went into remission, and has never come out. Whereas I, on the other hand... Veteran of 16 surgeries, experience with 3 separate stomas (all of which acted differently).
But back in the day there was no holistic medicine, diet, pro-biotics, not even 6MP. Just Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059940787674767322003-08-03T14:59:00.000-05:002003-08-03T14:59:47.676-05:00“Inspiration”: Thinking about Rick’s post (below), I’ve been beginning to wonder about needing to be “inspired.” What happened to the days in the past when I didn’t need to be inspired? There’s something weird about having to be inspired, as if life weren’t inspiring enough (when it used to seem to be). It’s like you have to trick yourself to get out of bed in the morning, to tell yourself Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059743359433873152003-08-01T08:09:00.000-05:002003-08-01T08:09:19.490-05:00Looking too far ahead: I've recently found that I have made a mistake in analyzing my whole battle with IBD. At first, I lumped it all together. In reality, my recovery came in two stages. My first was GET INSPIRED.....anyway possible (music, movies, books, etc.). In this stage, I looked at what previous people have done just to see what is possible in the long run. Were they able to gain Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059618850722691922003-07-30T21:34:00.000-05:002003-07-30T21:34:10.780-05:00Being sick: I haven’t written for a few days, because I came down with a really bad rash, all over me, and pretty itchy. It turned out to be nothing huge, just an allergic reaction to something (though I’m still not sure what that “something” is). Anyway, it’s gone now.
This got me thinking in all sorts of ways of what it means to be sick, and especially now that I have a permanent sort of Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-105942702239105112003-07-28T16:17:00.000-05:002003-07-28T16:18:10.923-05:00On the same topic of Chad's blog below.... I am RE-learning that balance. As I had my surgery and recovery about 5 years ago, I thought I knew everything there was to know about the topic. I'm beginning to realize that I had forgotten so much about that time and struggle that I had, and had become a little disconnected with it. It certainly is theraputic to talk about it no matter how long Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059365393738138632003-07-27T23:09:00.000-05:002003-07-27T23:09:53.763-05:00Getting up slowly: I guess I have to be a little careful about being gloomy on this blog. You’ll notice at the top of the blog are ads “powered by Google.” The idea is that the text of the blog gets searched, and then on that basis, the web banner will display ads appropriate to the topics being discussed. So for example, a lot of the time, you’ll see ads for “effective colitis remedies.” Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059270279174777492003-07-26T20:44:00.000-05:002003-07-26T20:44:39.130-05:00Staying in the ring: One thing that I would recommend to those facing surgery and its aftermath is to, beforehand, compile of list of movies you really want to see, and make sure your local video store (or library) has them. The blessing and curse of living in the 20th and 21st centuries is that you get TV as your post-operation friend: when you’re too tired, it does the playing for you. So Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059094155262578902003-07-24T19:49:00.000-05:002003-07-24T19:49:15.176-05:00A warm welcome to our latest blogger, Susan!Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059081569994957692003-07-24T16:19:00.000-05:002003-07-24T16:19:30.010-05:00It was a pleasure reading Susan's blog below! It helped me realize something that had slipped my mind. Confidence! I realized that before my surgeries, I had zero confidence with the whole UC deal. It took me quite some time to tell my girlfriend of a couple years (now my wife) about what I had. Afterwards, I was a new man, mentally & physically. Almost too much confidence. I'll share Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1059013855020421382003-07-23T21:30:00.000-05:002003-07-23T21:52:01.950-05:00Blogging, Internet, On-line support groups. None of this existed when I had my colon removed in 1987. Its easier to find others who are going through similar experiences now than it was then.
Human nature hasn't changed, though. I went through so much denial .... I had UC for 5 years before I even asked what the mysterious surgery was that they did if steroids didn't work. And aside from Susanhttp://www.blogger.com/profile/17143429319353277548noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058998227170429872003-07-23T17:10:00.000-05:002003-07-23T17:20:23.340-05:00On knowing, not-knowing, and not wanting to know: I had my colon taken out about 4 months ago, on March 28th. At the time, it was kind of a shock – a lot of people, some knowledgeable, some not, said that it wouldn’t come to surgery. My brother has colitis and, though he spent some time in the hospital, he didn’t have to have his colon out. So, I thought, it’s not going to happen to me. As IChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058984186449111332003-07-23T13:16:00.000-05:002003-07-23T13:26:22.626-05:00Just a little blog about the "J-pouch"....
I am not a medical expert on the subject, but I do know quite a bit about what a J-pouch is, how it works, and have talked with quite a few people who have all had the exact same experiences as I have. First of all, all J-pouches are done in a two part series of surgeries. In the 1st one, the colon (and appendix...bonus free surgery: ) is removed, andRickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058745539978659972003-07-20T18:58:00.000-05:002003-07-20T18:59:00.096-05:00Groupthink: I’m debating whether or not to go to the National Convention sponsored by UOA in August. One big factor is whether or not I’m ready for my first airplane flight after the surgery; another worry is that this late in the day, it might be hard to get a decent airline rate, or a room at the convention hotel. I also worry that, like reading Ostomy Quarterly (see my previous post), it’llChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058546235033173652003-07-18T11:37:00.000-05:002003-07-18T11:38:17.670-05:00Very short blog today.....
I spoke with Chris Gedney again yesterday about a project we are doing with the CCFA and he gave me one of his own quotes to use in a brochure we are creating. I thought it would be useful to share it with you.
"Always stand strong in the face of adversity. Never give up and rise one
more time than you have fallen"
Sounds like good advice. As long as you are takingRickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058384531866824312003-07-16T14:42:00.000-05:002003-07-16T14:42:11.920-05:00As if you haven't been able to see the pattern yet, I normally will get ideas of what to blog about after reading Chad's previous message. Today is no exception.
I don't have a lot of wisdom to give, but I can offer a little advice that might help you see things a little differently. Having just talked with Chris Gedney (one of my inspirations) about 5 minutes ago, I was reminded of something Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058366843506115322003-07-16T09:47:00.000-05:002003-07-16T09:47:23.373-05:00Choices: Yesterday, I got my first issue of “Ostomy Quarterly.” I have to admit, flipping through it was fairly depressing: from the cover picture of a very old woman trekking through the mountains (one annoying thing about sitting in gastroenterologists’ waiting rooms is that, from my experience, everyone is about 50 years older than I am. And this just reinforces the feeling of unfairness Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1058029366075046502003-07-12T12:02:00.000-05:002003-07-12T12:02:46.023-05:00Miles to go: There are some days when I feel like I need a secretary, just to keep track of the things I need to do to stay well, to make my insurance company happy, and to plan for my next surgery. Yesterday, I had to start the morning by going to the doctor to get a shot, then I had to arrange some paperwork to send to my insurance company, I had to phone Convatec to see if I was still Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057957512027158552003-07-11T16:05:00.000-05:002003-07-11T16:05:12.020-05:00Well, I had written a lengthy blog this morning, but something happened and it is lost in cyberspace. Oh well. The gist of my message was....
Bankruptcy, although it has a Taboo stigma attached to it, wasn't that bad. I simply filled out a lot of paperwork, gathered all my bills, and paid a lawyer fee. Poof....the debt was gone. From that point on, any bill I got or phone call I received, IRickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057877980550497462003-07-10T17:59:00.000-05:002003-07-10T17:59:40.406-05:00Bills: Rick talked a bit about his experience with hospital bills, having no insurance and having to declare bankruptcy. I’m now possibly facing the same prospect myself. The whole thing is simply Not Fun – hospital bills perhaps being the best example of insult being added to injury. It’s rarely a day that I don’t get a letter from the insurance company in the mail – and the news just keeps Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057864033701219622003-07-10T14:07:00.000-05:002003-07-10T14:07:13.780-05:00On my daily search for inspiration, I found a simply AMAZING quote from one of my heros, Lance Armstrong. Seemed fitting to share this with you being that he is currently going for his record tying 5th consecutive Tour De France victory:
"But the fact is that I wouldn't have won a single Tour de France without the lesson of illness. What it teaches is this: Pain is temporary, Quitting lasts Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057772080082586152003-07-09T12:34:00.000-05:002003-07-09T12:34:40.120-05:00Just a quick point for the day. Hopefully you have seen the movie The Wizard of Oz, as it will help you get my point. I see life as a series of magic curtains, if you will. Yes, like the magic curtain of Oz. Behind these curtains are all the levers, switches, and buttons that give you insight on how something truly works. Throughout life you gain many experiences and get to catch a glimpse Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057765804036399082003-07-09T10:50:00.000-05:002003-07-09T10:50:04.030-05:00Being sick: On the walls of a station for a train I used to take occasionally, there was a sign that said, “Cry only in small, dark places.” The idea, I guess, is that no one really wants to see your suffering, no one really wants to see you in pain – so please, if you must do it, do it some place out of the way, where we won’t run into you. That way, we can get on with our lives.
I was Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057765763721345182003-07-09T10:49:00.000-05:002003-07-09T10:49:23.730-05:00First, a belated welcome to Rick, whom I met only a few months ago, but has already been a great help (even an "inspiration") to me. Be sure to read his posts!Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057687468593033202003-07-08T13:04:00.000-05:002003-07-08T13:04:28.616-05:00Before getting to my point of the day, I wanted to touch upon something that Chad stated below. After trying many different versions of explaining Colitis, I've had the most luck with describing it as "Internal Bleeding" in the colon. It usually lets them know that it is more serious than Gingivitis, and mention of the colon usually tells them enough. Once in a while I will get a follow up Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057625976200558532003-07-07T19:59:00.000-05:002003-07-07T19:59:36.063-05:00Talking about it (and forgetting about it): One of the especially awkward things about having a disease, like colitis, that effects your colon and, inevitably, how you go to the bathroom, is that it’s hard to talk about it. Even in my first post, I gingerly mentioned that I was making “many more bathroom visits” when my colitis was flaring up. Sometimes I wish there was just a web-page Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057587722007889022003-07-07T09:22:00.000-05:002003-07-07T09:22:02.086-05:00I am not sure if I am doing this right, and this is my first time blogging (which sounds like the clinical term for juggling bowling balls), so bear with me...
I've had the "luck" of having many years of before and after colitis experiences that I will never forget. As crazy, wild, and depressing, as this journey has been at times, I wouldn't give it up for the world. I've met some rather Rickhttp://www.blogger.com/profile/09419530419186239264noreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057541946084979372003-07-06T20:39:00.000-05:002003-07-06T20:39:06.003-05:00Regrets: I had my surgery only a few months ago, and perhaps because it’s so recent, I’m filled with regrets about the events leading up to it. My mind keeps on going over the what ifs, thinking that if I had only done something differently, I wouldn’t have ended up without my colon. There was the time (as I noted below) where I took the wrong medication, because of a mix-up with my doctor. Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057453311658674102003-07-05T20:01:00.000-05:002003-07-05T20:01:51.563-05:00Now: I feel like I’m a bit of a twilight zone. I’m waiting for my next operation, and generally recovering from my last operation. Being in the middle like this makes me feel like I’m getting well just to get sick again (getting your colon out takes a lot from you). It’s frustrating, because in a lot of ways I look normal, having gained back most of the weight that I lost in the hospital, butChadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057434871012142812003-07-05T14:54:00.000-05:002003-07-05T20:01:42.153-05:00Introduction: Last year, around June, I was diagnosed with ulcerative colitis. Things never really got that bad early on, and with the help of medications (mainly a Rowasa enema every night or so), the colitis was under control – in remission, really. I was able to run the Chicago marathon last October. It wasn’t my best time by any stretch, because the colitis did interfere with my training, Chadnoreply@blogger.comtag:blogger.com,1999:blog-5547807.post-1057413826607894592003-07-05T09:03:00.000-05:002003-07-05T09:03:46.610-05:00Welcome to Colitisblog! I'm still working on figure things out, so it may be a while before I'm able to post anything substantive. Stay tuned. I'm also trying to get other people to join me in blogging - so with luck, there will be some new members soon. Thanks.Chadnoreply@blogger.com