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	<title>J-pouch Life &#187; identity</title>
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	<link>http://www.jpouch.net</link>
	<description>Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn&#039;s, Surgery and Support</description>
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		<title>Don&#8217;t Ask, Don&#8217;t Tell</title>
		<link>http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/</link>
		<comments>http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/#comments</comments>
		<pubDate>Thu, 16 Jul 2009 02:13:57 +0000</pubDate>
		<dc:creator>Lizz</dc:creator>
				<category><![CDATA[IBD]]></category>
		<category><![CDATA[Crohn's]]></category>
		<category><![CDATA[Humira]]></category>
		<category><![CDATA[identity]]></category>
		<category><![CDATA[jobs]]></category>
		<category><![CDATA[Med]]></category>
		<category><![CDATA[Medication]]></category>
		<category><![CDATA[medicine]]></category>

		<guid isPermaLink="false">http://www.jpouch.net/?p=2068</guid>
		<description><![CDATA[So, at every previous job since I&#8217;ve had IBD I&#8217;ve been very vocal about my disease.  It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth!  Since I&#8217;ve been in remission and managed to get a job in Portland, OR in this crazy [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft size-full wp-image-2070" src="http://www.jpouch.net/wp-content/uploads/2009/07/shh.jpeg" alt="shh" width="85" height="129" />So, at every previous job since I&#8217;ve had IBD I&#8217;ve been very vocal about my disease.  It was practical because I was sick at the time, and when people asked me questions, the advocate in me burst forth!  Since I&#8217;ve been in remission and managed to get a job in Portland, OR in this crazy economy, I&#8217;ve decided that it no longer requires mentioning, or for that matter, broadcasting.  I tend to get up on my educational soap box when it comes to IBD, which is a good thing, and something I will certainly continue to do, however, I think many of us have learned all too well that even the most empathetic and understanding employer will, to some extent, always see your disease as part of who you are, and therefore, as a limitation.  I&#8217;d rather my work speak for itself.  I&#8217;m working as a paralegal, which basically means I do a lot of writing that the attorneys sign their names to.  It&#8217;s okay because I adore any chances to write and get paid for it <img src='http://www.jpouch.net/wp-includes/images/smilies/icon_wink.gif' alt=';)' class='wp-smiley' />  I&#8217;d rather keep professional courtesies, well, professional.  I am a very open, friendly person and I definitely let that come out in my job, but I am also trying to work on that part of me that for so long made Crohn&#8217;s a part of my identity.  It doesn&#8217;t define me and I no longer want it to, so I&#8217;ve made a real effort to modify that.  It&#8217;s easy to not complain when you are in remission and not suffering or in pain.  So, for the past few weeks, I&#8217;ve overheard our secretary talk about her mother&#8217;s &#8220;colitis&#8221;.  I kept my mouth shut until today when another paralegal started talking to her about a friend of hers who had Crohn&#8217;s that was airlifted to the hospital.  At that point my IBD alarm went off and I thought, &#8220;Okay, I know a lot about this&#8230;maybe I can offer some helpful words.&#8221;  So, without an intro of, &#8220;I have that too!&#8221; I just asked if the girl was on any meds.  Sounded like she&#8217;d unsuccessfully tried everything, including Humira, which was my savior.  I had nothing more to offer, so I hushed.  The secretary then started talking to me about it more and I said, &#8220;I have an interest in GI disorders and know quite a bit about it, so I was curious.&#8221;  I was actually able to make some suggestions to the secretary about her mother, she then asked me, &#8220;So do you know someone with it?&#8221;  My reply, a smile and a, &#8220;Yes.&#8221;  I then went back to my work.</p>
<p>So what is your policy regarding IBD in the workplace?  It&#8217;s certainly nothing to be ashamed of, and I&#8217;m oddly proud of it, but I&#8217;ve lived and learned and am, for now, deciding to remain a mystery <img src='http://www.jpouch.net/wp-includes/images/smilies/icon_smile.gif' alt=':)' class='wp-smiley' /> </p>
<p class="facebook"><a href="http://www.facebook.com/share.php?u=http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/" target="_blank"><img src="http://www.jpouch.net/wp-content/plugins/add-to-facebook-plugin/facebook_share_icon.gif" alt="Share on Facebook" title="Share on Facebook" /></a></p><h3  class="related_post_title">These posts might also help out:</h3><ul class="related_post"><li>August 5, 2010 -- <a href="http://www.jpouch.net/2010/08/05/crohnsagain/" title="Crohn&#8217;s&#8230;Again?">Crohn&#8217;s&#8230;Again?</a> (7)</li><li>November 10, 2009 -- <a href="http://www.jpouch.net/2009/11/10/just-dance/" title="Just Dance!">Just Dance!</a> (8)</li><li>February 11, 2011 -- <a href="http://www.jpouch.net/2011/02/11/belladonna-wars/" title="Belladonna Wars?">Belladonna Wars?</a> (7)</li><li>December 8, 2010 -- <a href="http://www.jpouch.net/2010/12/08/cleveland-clinic-day-1/" title="Cleveland Clinic, Day 1">Cleveland Clinic, Day 1</a> (6)</li></ul>]]></content:encoded>
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		<title>Boots&#8217; UC Journey Part 2</title>
		<link>http://www.jpouch.net/2009/04/20/boots-uc-journey-part-2/</link>
		<comments>http://www.jpouch.net/2009/04/20/boots-uc-journey-part-2/#comments</comments>
		<pubDate>Mon, 20 Apr 2009 19:33:37 +0000</pubDate>
		<dc:creator>booties4986</dc:creator>
				<category><![CDATA[our stories]]></category>
		<category><![CDATA[bloodwork]]></category>
		<category><![CDATA[dysplasia]]></category>
		<category><![CDATA[EKG]]></category>
		<category><![CDATA[gay]]></category>
		<category><![CDATA[identity]]></category>
		<category><![CDATA[IRA]]></category>
		<category><![CDATA[male]]></category>
		<category><![CDATA[ohio]]></category>
		<category><![CDATA[rectum]]></category>
		<category><![CDATA[stoma]]></category>

		<guid isPermaLink="false">http://www.jpouch.net/?p=1564</guid>
		<description><![CDATA[So part 2 of my 3-part surgery was scheduled for March 4th, 2009.  As before, we headed out to Ohio two days before the surgery to stay at my aunt&#8217;s. On March 3rd, we went into the hospital for the pre-surgery appointments, which included a check-up, EKG, bloodwork, nursing check-in, and a talk with the [...]]]></description>
			<content:encoded><![CDATA[<p>So part 2 of my 3-part surgery was scheduled for March 4th, 2009.  As before, we headed out to Ohio two days before the surgery to stay at my aunt&#8217;s. On March 3rd, we went into the hospital for the pre-surgery appointments, which included a check-up, EKG, bloodwork, nursing check-in, and a talk with the doctor. It was during this talk that we went over the J-pouch procedure, but my mom brought up the ileo-rectal anastamosis (IRA), which was a procedure he had talked about at my one-month checkup but didn&#8217;t think it would have been an option. At that one-month checkup he did a quick scope to see how things were and when he looked over his notes of that day, he started to think that maybe the IRA was a good option.</p>
<p>He asked about the output from my rectum and said that I only had mild colitis in my rectum at the checkup but that it could have been healed over by now. I was starting to get excited, because this procedure seemed like it was going to be easier. An ileo-rectal anastamosis is where they just connect your small intestine to your rectum. With the J-pouch procedure, they take the rectum out, so it can&#8217;t be done that way. But few people are able to keep their rectum and so a IRA would seem like a good option for them. Since I had dysplasia in my rectum, I would normally not be a good candidate, but since he said I was young and had good overall health, he didn&#8217;t see the dysplasia coming back very likely. Plus, he knew I was gay and was worried about my lifestyle, so with IRA, I would still be able to have sexual intercourse. This was like a dream and I started to cry in his office, because I couldn&#8217;t believe that this was an option for me and that I would be able to feel 99% normal and not lose any part of my gay identity.</p>
<p>He did say that if the colitis came back bad in my rectum or if I kept getting dysplasia, that I might have to get the J-pouch in the future, but since I was young it could buy me 5, 10, or 20 years. I was totally fine with this and just relieved at the opportunity. Also, you can start using the IRA right away, so they were going to take down my stoma and let my bowels start working again. So, one day before my planned J-pouch procedure, we changed everything and set up to do a totally different surgery. It was a little un-nerving at first since I had prepared myself for the J-pouch but was exciting to know that this would be my last surgery and I wouldn&#8217;t have to get a third one!</p>
<p>So the next morning came and I got myself ready and said goodbye to my stoma. We checked in for surgery and did the usual IV setup and heparin shot and all that good stuff. I was wheeled outside the operating room and asked the usual questions about allergies and anesthesia problems. But when they asked me what procedure I was getting, I wasn&#8217;t totally sure which one they were doing, so I had to list both just in case. I was brought it and laid on the table. That brought about my favorite part of surgery, which is right before they give you anesthesia, because you are still conscious, but you know that any second you are going to feel extremely relaxed, then unconscious, and then wake up what feels like two seconds later and everything that you&#8217;ve stressed about for the past several months is over with. To me, it&#8217;s a great feeling.</p>
<p>And that&#8217;s what happened. I woke up in post-op and immediately felt my stomach, because I wasn&#8217;t sure which procedure they were able to do, so I wasn&#8217;t sure if I still had my stoma or not. When my hand landed on the area, it felt smooth&#8230;&#8230;it was gone!!! That means they were able to do the IRA and it was successful enough that I didn&#8217;t need to stoma anymore. This was the best result I could ask for! My mother came in with my aunt that we were staying with in Ohio. She came up to me and said &#8220;I got bad news&#8230;..you&#8217;re gonna have to go to the bathroom again!&#8221; Haha, it was her crazy sense of humor trying to tell me the surgery was a success.</p>
<div id="attachment_1779" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1779" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit11.jpg" alt="My mom with me in the hospital room." width="480" height="360" /><p class="wp-caption-text">My mom with me in the hospital room.</p></div>
<p>I was brought to my hospital room about an hour later and setup with the usual things I need. Ice chips, the breather that you have to breath in 10 times every hour to keep your lungs clear. It was harder this time, since the lapryscopic pain was in my chest and diaphragm. The first surgery gave me muscle pain in the shoulders, but I guess most of it was in my diaphragm now and that made the breathing apparatus harder to do. I also got the heparin shots twice a day as well.</p>
<div id="attachment_1769" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1769" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit4.jpg" alt="Using the breathing apparatus to keep my lungs clear." width="480" height="360" /><p class="wp-caption-text">Using the breathing apparatus to keep my lungs clear.</p></div>
<div id="attachment_1771" class="wp-caption alignnone" style="width: 370px"><img class="size-full wp-image-1771" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit2.jpg" alt="Walking around the halls with all the machines and tubes connected to me." width="360" height="480" /><p class="wp-caption-text">Walking around the halls with all the machines and tubes connected to me.</p></div>
<p>I was dying to look at the new scars, so when they changed my bandage, I got my first glance. It was weird looking. The doctor told me, they couldn&#8217;t sew it shut, since it&#8217;s a high-risk of infection area, so they had to sew the underlying muslces, but the skin was left open. So it was like a hole in my stomach. It was about the size of my belly button and looked like a gunshot wound. I was really worried that it was going to leave a big scar, but the doctor said it would heal up pretty well.</p>
<div id="attachment_1772" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1772" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit3.jpg" alt="The hole in my stomach." width="480" height="360" /><p class="wp-caption-text">The hole in my stomach.</p></div>
<p>One of my least favorite things was that I had both a catheter and a rectal tube. The catheter was fine, but the rectal tube was a little uncomfortable. I had thought that it was taped to my butt, because I felt a little tug,  so when I went to adjust it, I found that it was sewn in! Not sewn into the anus, but the tube was looped onto a stitch that went into my butt cheek to keep it in place. Haha, that made me very nervous to move. On the 3rd day, I got the catheter removed, but the rectal tube stayed in. I noticed that day that I was feeling a little bloated and asked for the rectal tube to be removed. They told me it would help pass things and should be kept in until I was on semi-solid food. I had that feeling all day and was not even hungry. I started feeling really tired and randomly slept all afternoon, which was not like me at all. By the time I woke up, I knew I reallllly had to go to the bathroom and so I got up and went to the bathroom, thinking I was going to need to do something about this tube. I barely made it to the bathroom in time (all that darn equipment and tubes you&#8217;ve got to take with you) and I just started going to the bathroom around the tube. It was like it was blocked and coming out anyways. Nothing was even going through the tube. I felt a little bit of relief and told my mom to get a nurse to take the tube out. Someone came in and snipped the suture and pulled the tube out, which made me have to go to the bathroom again. I went right back in and ALOT of stuff came out. It was a major relief and felt like I lost 2 pounds. It was mostly liquid, but no blood or anything.</p>
<p>With all that done and with me off the morphine and on solid foods and going to the bathroom fine, I was cleared to go home the next day, which was Saturday. I had really bad sleep Friday night since it was my first night without the tube, I was going to the bathroom like every hour. My new digestive tract was trying to get itself adjusted and just wanted to keep being used! It was kind of annoying, but I knew to expect it and I also knew it was going to get better. They said I should erratic bowel movements for about the next six months.</p>
<div id="attachment_1773" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1773" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit5.jpg" alt="Home from the hospital with my bandage still on." width="480" height="360" /><p class="wp-caption-text">Home from the hospital with my bandage still on.</p></div>
<p>The next week was me going to the bathroom about 10-20 times a day, but it progressivley got slower and once I started experimenting with imodium, it helped alot. As for the scar, it formed a membrane within a couple days and then just was healing faster than I thought it could. It eventually became a scab and thats when I could stop wearing the bandages. There were no other cuts from the surgery besides the belly button, so it was a much easier recovery than the first one. I was pretty much able to get up and walk around from the time I got home from the hospital. And there were no blockages or problems with food, so I was happy with that. I would say my recovery time was really only about 2 weeks this time. I was still on a weight restriction, and couldn&#8217;t start work for 4 weeks.</p>
<p>As I write this, almost 7 weeks posts-surgery, my scab is gone, I go to the bathroom about 4-8 times a day, I&#8217;m back at work, and feeling better than ever. I had my follow-up appointment last week and the doctor said everything seems fine. I need to get annual scopes to make sure everything is still good that there is no colitis or dysplasia, but other than that, I can finally say that my life is normal. At least me health is, I can&#8217;t account for the rest of my life! Haha.</p>
<div id="attachment_1774" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1774" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit6.jpg" alt="One week post-surgery." width="480" height="360" /><p class="wp-caption-text">One week post-surgery.</p></div>
<div id="attachment_1775" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1775" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit7.jpg" alt="One month post-surgery." width="480" height="360" /><p class="wp-caption-text">One month post-surgery.</p></div>
<div id="attachment_1776" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1776" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit8.jpg" alt="Seven weeks post-surgery." width="480" height="360" /><p class="wp-caption-text">Seven weeks post-surgery.</p></div>
<div id="attachment_1777" class="wp-caption alignnone" style="width: 490px"><img class="size-full wp-image-1777" src="http://www.jpouch.net/wp-content/uploads/2009/04/edit9.jpg" alt="Seven weeks post-surgery. Mostly healed!" width="480" height="360" /><p class="wp-caption-text">Seven weeks post-surgery. Mostly healed!</p></div>
<p class="facebook"><a href="http://www.facebook.com/share.php?u=http://www.jpouch.net/2009/04/20/boots-uc-journey-part-2/" target="_blank"><img src="http://www.jpouch.net/wp-content/plugins/add-to-facebook-plugin/facebook_share_icon.gif" alt="Share on Facebook" title="Share on Facebook" /></a></p><h3  class="related_post_title">These posts might also help out:</h3><ul class="related_post"><li>December 20, 2009 -- <a href="http://www.jpouch.net/2009/12/20/new-website-for-gay-people-who-are-affected/" title="New website for gay people who are affected!">New website for gay people who are affected!</a> (5)</li><li>July 15, 2009 -- <a href="http://www.jpouch.net/2009/07/15/dont-ask-dont-tell/" title="Don&#8217;t Ask, Don&#8217;t Tell">Don&#8217;t Ask, Don&#8217;t Tell</a> (12)</li><li>June 20, 2009 -- <a href="http://www.jpouch.net/2009/06/20/stoma-retraction-or-changing-my-flange-8-times-in-24-hours/" title="Stoma Retraction (or, changing my flange 8 times in 24 hours)">Stoma Retraction (or, changing my flange 8 times in 24 hours)</a> (5)</li><li>June 19, 2009 -- <a href="http://www.jpouch.net/2009/06/19/colitis-to-dysplasia-surgery/" title="Colitis to Dysplasia Surgery">Colitis to Dysplasia Surgery</a> (1)</li></ul>]]></content:encoded>
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