CCFA Take Steps Charity Walk

February 10, 2010

I just registered myself for the Albany, NY Take Steps Charity Walk for the Crohn’s & Colitis Foundation of America. It is going to take place on May 1st, 2010. I will give the link and I suggest you look into local walks near you and I urge you to participate.

I also walked last year and it was a great experience that my parents came up for, and some friends from work also joined me. It felt amazing to have people that cared about me take a day off work to participate in a charity event I cared deeply about. We ended up raising just over $600.00

There were also free T-shirts, bandanas, and hats that you get when you participate. Hopefully some of you can join, and if not I’m certainly accepting donations for me team!

Site Link: http://online.ccfa.org/site/PageServer?pagename=TS_homepage

Link To My Page: http://online.ccfa.org/site/TR/Walk/Chapter-UpstateNY?px=1443825&pg=personal&fr_id=1802


Stool Coloration: How Do We Know What’s Normal?

January 6, 2010

I got an e-mail from a viewer of J-pouch.net and she was contacting me on behalf of her boyfriend, who is post-surgery. She was concerned because she said his stools were a reddish color, and he wasn’t thinking this was anything abnormal, but she wanted my opinion on whether this was something to look into.

In my response, I asked her what type of surgery he had, how long ago, and to clarify the reddish color. These can all be important in determining where the color might be coming from, and whether or not it’s normal.

From what I’ve previously looked into, it seems that darker reddish or black stools can indicate a problem in the upper part of the digestive tract, while brighter reddish stools can indicate a problem in the lower part. It could be as simple as something like an anal fissure or hemorrhoids, but it could also be more serious signs of something like colon cancer, or a digestive disease.

Seeing as we all have lived with a digestive disease, how can we differentiate what’s normal to be in a stool? First off, I need to say that you should ALWAYS ask your doctor first and take his/her advice. There is too much information on the internet and some of it might be false, or lead you into thinking the wrong thing, therefore causing some much unwanted stress. I can’t even assure that this information is correct, this is just what I’ve seen many times before from different resources.

I know I’ve seen a vast amount of colors in my own bowel movements, and I can usually always attribute it to something I’ve eaten. Since we are missing our large intestines, our food obviously isn’t totally digested by the time we excrete it. This would mean that any food with certain colors can also come out those similar colors. I know red gatorade, beets, Kool-Aid, or tomato juice can all cause a red color. When I take a multi-vitamin with iron, I notice my stool is is a lot darker than normal, and I know it’s because of the iron.

People like me, who have an ileo-rectal anastomosis, still have their rectum intact. There are chances that one could still get minor colitis in the rectum, and this could be a source of a reddish stool if that’s the case. For those living with the J-pouch, a reddish stool might be a sign of pouchitis, an infection that can be cured by a treatment of antibiotics. For anyone else, you might want to consult your doctor so you can get an answer as to what might cause the coloration.

As for us gay men, if you partake in receptive anal sex, it could be damage from sexual contact. For those living with the J-pouch, anal sex is not recommended at all, and I can imagine it would definitely lead to some bleeding. This is a very tender area and something you would definitely want to take care of.

Does anyone else see similar colors? And if so, what have you heard about the causes of this?


2010: New Year, New Beginnings

January 4, 2010

Happy New Year everyone! The one thing I always like about a new year, is the feeling that you can change your whole outlook on life in one day. Between the transition of 11:59pm and 12:00am, you can decide that you will be a whole new person, with all new goals. I have decided that 2010 will be more about me, than about me trying to fulfill what I think is “me”. I can definately say I spent that last decade trying to achieve an image of myself, which only caused me stress and worry.

In the past decade, I had a total of 7 surgeries, including the colectomy, facial reconstruction for an underbite, tonsils, removal of dysplasia cells, and removal of my wisdom teeth. I also dealt with coming out to family and friends, achieving a college degree, attempting a long-term relationship, and finally getting a full-time job. Not to mention the whole ulcerative colitis and major surgeries combination, just to end out the decade.

Of course, I don’t find this to be any more intense than anyone else’s life, I’m just ready to close out the chapter of the 2000’s and start a new one with the 2010’s. I rang in the New Year just the way I wanted my new life to begin: I went out alone, and I went home alone. I couldn’t really get any friends to commit to going out, and I didn’t want to hang at someone’s apartment, I wanted to go dancing and have a good time. I normally would NEVER go out alone, because I usually would just feel like some weirdo in a corner, but I had decided that it would be a self-exploration exercise.

I walked into the club with confidence and ordered a drink at the bar. There were couples everywhere, so I went upstairs to the dancefloor. I stayed up there most of the night, making eye contact with one guy that had been staring me down for a little while. This made me smile, and no matter how you feel about yourself, it’s always good to know you still got it! As the countdown began, I briefly worried that I wouldn’t have anyone to kiss at midnight, then realized that I didn’t NEED anyone to kiss at midnight. If I had myself, I had enough. When the clock struck midnight, there were cheers and screams and I apparently was standing under a confetti bucket, because about a pound of confetti fell on me, in my drink, and in my champagne toast. It sucked, but was kind of funny, haha. This opened up the window for that guy to approach me, because he came over laughing and helped me brush off the confetti, to which we discussed the joys of being out on New Year’s Eve.

We chatted for a little bit, and danced for a little bit, but he wasn’t totally my type. Normally, I would ignore it and still want to hang out with him, and I would secretly never be happy about it and it would eventually cause us to have an argument about two months down the line when we can’t figure out why things aren’t working out. So I had taken lessons from the past and decided to not make the same mistakes again. I hung around the bar again for a little bit and some guy came up to me and said that I was “the most gorgeous person of the new decade”. Haha, this really got me going and I thanked him and decided that now was a good time to leave the bar, because I was feeling great about myself and great about the new year.

I went home that night and layed in bed, thinking about my New Year’s resolutions:

  • I want to not think about diseases or surgeries for a whole year
  • I want to find friends that I can call last minute and they will genuinely want to hang out with me, and will be free to do so
  • I want to volunteer some time to help others out
  • I want that toned, fit body I’ve been trying to achieve since high school
  • I want to laugh more often
  • I want to focus on myself as an independent person and try to realize that I don’t need a relationship to make myself complete

What are your resolutions for the New Year?

P.S.- I was also thinking: If anyone has an ostomy, I think going to New York City for New Year’s Eve would be a good idea. If you think about it, those people that crowd around Times Square can’t lose their spot to go to the bathroom. And you hear about people who say they wear adult diapers and just go right there. So if you have an ostomy, you wouldn’t need to go to the bathroom, and therefore wouldn’t have to worry about losing your spot in Time Square. Take advantage of the benefits of having an ostomy! =)


NEW POLL: Pre- and Post-Surgery Attractiveness

December 30, 2009

I wanted to get an idea of the difference people feel about themselves in relation to the surgery. Sometimes it can make you feel more attractive, but it can also lower self esteem if you might have issues with the scars or living without a large intestine. There are also some who felt less attractive while they were sick, so the surgery only made it better, no matter what the outcome.

Let me know what you guys think!


My Scars Remind Me That The Past Is Real…

December 29, 2009

6 months post-op

I remember when I had first heard about the procedure, all I could think about was what my stomach would look like with a scar going down my entire torso. It was terrifying and as a gay man who was 22 years old, I had thought that it would ruin my idea of a beach body. I would never have the smooth, chiseled so greatly desired and admired by other gay men. I would never be able to let someone rub my stomach, without thinking they were wondering what the heck that thing was.

1 year post-op

But after a little bit of research into the surgical options, I found that there was a way this procedure could be done laparoscopically. It was an immediate interest for me, and I’m vainly ashamed to admit, it was a big part of me being able to decide on going through with the surgery. I had first seen pictures of the laparoscopic procedure on Mark, from Jpouch.net. I had thought that it looked great and hardly like a major surgery had been done at all. Seeing those pictures gave me a lot of comfort.
Further research found me a doctor at the Cleveland Clinic in Ohio, where I eventually went through the surgery. I remember the night before the surgery, as I was brushing my teeth, I stood there and stared at myself naked in the mirror for about 20 minutes. I looked over every inch of my body to memorize any changes I might see in the future. I rubbed my hands over my torso to feel the smoothness. I tried to imagine the big scar, and then think how lucky I was to be able to have it done laparoscopically. I thought about whether I was going to be comfortable taking my shift off, or whether I would have a shred of doubt as to where people might be staring. Then again, being sick took me out of shape, and the prednisone made me gain weight, so would I even feel comfortable having my shirt off in my current state anyways? I didn’t think so.
Towards the end of my self-pity mirror session, I suddenly got a bad cramp and had to head to the toilet for one of my frequent bowel movements. That moment right there assured me that no matter what the aesthetic cost, getting rid of the damn disease was worth it!
As I write this one year later, the thoughts of those scars are completely out of my head. I was pre-occupied with the ostomy for 3 months, then pre-occupied with the healing of the wound for another couple months after that. I had used Mederma, but didn’t find that it helped all that much. Maybe I should do it in another year, when the scar is considered ‘old’. I had a fabulous summer, and I was shirtless for most of it, just showing off my scar as an advertisement of what I went through and what I survived. I even get a little entertainment out of it, because it’s so funny to see people’s faces when you tell them you got stabbed in a gang fight. Or you got shot while trying to save an old woman from a stray bullet. Or you have a second belly button. Or you had an ‘I ❤ Mom’ tattoo removed.
You can create your own story, and make it as far-fetched as you want, because no one else is going to recognize those scars, besides a fellow j-poucher. As far as me, I still rub my hands over my torso all the time, and even though it’s not totally smooth, it’s painless and it’s a feeling of self-accomplishment. I often think about getting a tattoo arounds the scars as a symbol of what I went through, but I can’t even begin to think of what I would put there. Plus, I like it just the way it is, and I wouldn’t trade it in for a set of six-pack abs (okay, maybe I would, hahaha).

2 Weeks Without Lomotil… Still Good!

December 28, 2009

So when my Lomotil script ran out, I contacted my doctor’s office in Cleveland, OH to call me in a new one at my pharmacy in Albany, NY. Apparently, a recent NYS law requires that the actual hard copy be there for controlled substances (which I just found out Lomotil was). So they called the office a couple times and it made my feel bad, because I work in a doctor’s office and I know how annoying persistant calls can be. I got an e-mail from the nurse and she said she sent it out in the mail. Unfortunately, they sent it to my parent’s address in Syracuse, and with the holidays, I knew it would have taken forever, so I just decided to wait until I got home for the holidays.

So now I’m back in Albany and I just dropped the script off at the pharmacy this morning. But I’m realizing that I have already gone two weeks without using the Lomotil and don’t seem to have many noticeable differences. It’s not that I go to the bathroom any more frequently, but that I noticed it was a little more liquidy. But I don’t think it requires me to take 6 pills a day. So I’m going to keep it on an as-needed basis, or maybe just take one at dinner, and then have my fiber supplement at lunch. I think this should manage it nicely.

I used to continue the Lomotil religiously, just because I was recently dating someone and I wanted to make sure it was as controlled as it could be. Also, you want to make sure it’s not too liquidy, because we all know that can also create a problem when you want to be intimate.

Does anyone else take Lomotil, and do you notice a difference when taking it? If not, what other supplements do you take?


UC & Relationships: Obstacle or Challenge?

December 21, 2009

So living with UC or Crohn’s, or living post-surgery, can be very tough if you are single and trying to start a relationship. Belieeeeeve me, haha.

Some of us were in relationships when we first got sick, and I give immense credit to those partners who stuck around with us while the timing was tough. I have the deepest respect for you, because it is very hard to understand what your partner is going through and the type of emotional rollar coasters they go through, as well as the intense physical changes they experience. Those relationships may have been strained by the disease, and either ended or grew from working through it.

But then there are some of us who are single and facing the challenges of how to bring a relationship into our already crazy lives. There’s always the question of whether you should bring something up to them in the beginning or wait awhile. But then again, they are seeing you go to the bathroom all the time, so I think it’s better to bring it out in the open, so they aren’t wondering why you always head to the bathroom. They could be thinking a lot worse things, haha.

For those of us living post-surgery, it’s something you may be able to keep discreet for a lot longer. At least until you get your shirt off. I know most of the time I end up telling someone is because they ask what the scar is on my stomach. I had it done lapyroscopically, so I only have little poke-hole scars, and one bigger scar from the ostomy. That’s usually the only one they notice. Sometimes I joke that I got caught in a knife fight, or that I was “in the wrong place, at the wrong time”. The look you get back is priceless and totally worth any strange thoughts they may have. Then I tell them I’m joking and confess the true story, which coincidentally gives the same face, haha. Most of them can’t actually believe that you can have your whole large intestine out. So I continue to joke and say that you can’t have the whole thing out, and I just did it anyways to be used as a test subject. If anyone can get past my dry sense of humor about this surgery, I know they’re a great person.

I have to say that of the guys I’ve dated since the surgery, every single one of them accepted me for it, and was even a little curious about it. Some would come back the next day with information that surprises me, only to find out they went home and googled it. That always makes me smile, because to have someone research a topic so they could understand it more means a lot to me. Some would want to see the pictures from the surgery, while others were fine without that. One main thing that sits like an elephant in the room, is that we may both be thinking about sexual practices. I wonder if they think whether or not I can have sex, and they might actually be thinking that same thing. So I usually just toss it out there, so we can get that topic out of the way. I tell them, yes, I can have sex.

I have an ileo-rectal anastamosis, which means I still have my rectum. That means I would still be able to have sex. People who live with the j-pouch are not advied to have surgery, because the sutures are right at the end, and very vulnerable to damage. But that is going to require it’s own post at a later time.

One unfortunate thing I have to say is that each relationship is still always bothered by this journey. I can say that 100% of the time it’s my fault. I have insecurity issues and I have yet to get over them. But it’s only been 7 months since my last surgery, so I know I have more time to accept things. I’m confident that once I’m totally comfortable with myself, I will be able to let someone into my life completely and have a successful relationship.

So I now want to open a topic about how relationships work for you? Have you had success? Were you already in a relationship? And did it fizzle or grow from the experience? Do you find it hard to date, and when do you usually bring the topic up? Has anyone had any bad experiences that they would like to share? I would like to hear from as many of you as possible so that others can see the experiences people go through and what the final results are. I think the only way we can accept ourselves is to know that others accept themselves and to learn from example.