I just created a blog to be a resource for members of the GLBT community to visit and get some answers on questions that you have been searching endlessly for. I know it’s a very taboo topic, but as a gay man, I would have loved having a place where I can go and ask any questions I want without feeling embarrassed. I have posted on jpouch.net before and got a lot of responses from people thanking me for putting information about being gay and facing the surgery. I have done a lot of research onto the topic and hope to provide some answers and/or comfort to those of you suffering.

http://gaydigest.wordpress.com/

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• April 5, 2010 -- Home from Surgery #1 (1)
• March 27, 2010 -- Colston Thomas Mills (4)
• February 25, 2010 -- Commenter with Questions (13)

I'm healthy & happy!

So my one-year anniversary of my first surgery is about 2 weeks away (December 10th), and I thought I would update everyone. I’m sorry, I haven’t been on this site in a few months, because I now have a 2nd job at a hospital and am very, very busy. I want to start and say that if anyone would like to contact me to talk about how I’m doing and how I handle things, feel free to e-mail me at Booties4986@aol.com.

Everything’s been pretty much back to normal for me, though after all that I suppose I can’t estimate what normal is. All I can say is that I feel amazing, I have no pain, and I feel like the year 2008 was a shadowy part of my life that is now over and I can continue doing whatever I wanted to do before anything happened.

For a little bit in May 2009, I came down with a virus or flu and it caused me to start going to the bathroom more frequently, up to 12 times a day. My doctor prescribed prescription immodium and also Lomotil. Those helped me out alot and I am on the Lomotil til this day. I take about 4-8 pills a day, depending on when I remember it and whether I think I’ll need it. I’ve learned to recognize the pattern of my bowel functions. Since I have the IRA, my digestive tract is much faster than normal people. For instance, it can be as short as 2 hours. This can work out to my advantage, when I know I have something to do on a day, I can plan when I want to eat, so I will be clear and not need to use the bathoom. I also no longer have the urgency I did before and that is a major relief.

I also try to take a fiber supplement once a day, but most of the time I skip out on it because of work schedules. Thankfully it doesn’t make a huge difference for me. I go to the bathroom about an average of 5 times a day. This is on a non-restricted diet. I actually eat whatever I want, and nothing has seemed to bother me. I eat vegetables, sometimes raw vegetables, and I’ve experimented with nut and seeds. They don’t bother me, but they don’t totally digest either, and I feel like I’m just better off being without them.

The one thing about my life right now I wish I could change is the fact that I don’t get to sleep a night through. I notice it on the that I work at both my jobs, because I get more tired. Since I get up about 2 times a night, I never really get to enter the REM cycle of sleep, which is the restorative part of sleep. So therefore, it’s like I start to enter the deep part of sleep, but then get up to go to the bathroom and it really becomes a series of long naps. But I have to say that is a small price to pay for the health I can live with now.

As far as relationships go, I’ve had quite a few attempts since my partner left me right after my first surgery, but none had been successful. I feel it was a mixture of my being nervous about how they would feel about my disease, and also my needing the independence I feel like I lost while I was sick. I have hope that one day something will work out and I will stick around and keep attempting relationships until I can find one.

I had a very fulfilling summer with my friends this year and I have done a lot of stuff since being healthy. It had finally allowed me to get a full-time job and get on with my life. I’m currently looking into graduate schools again (I applied to 10 right before I got sick and had to withdraw my applications when I was diagnosed). I now have the opportunity to achieve what I want, and know that at 23 years old, I can say I survived the disease and that it’s part of my past. I never take for granted the health I have and it will always be on my mind, and something I will never again ignore.

6 Months Post-Op (this picture was taken over the summer)

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

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’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’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’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.

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’t have to get a third one!

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’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’ve stressed about for the past several months is over with. To me, it’s a great feeling.

And that’s what happened. I woke up in post-op and immediately felt my stomach, because I wasn’t sure which procedure they were able to do, so I wasn’t sure if I still had my stoma or not. When my hand landed on the area, it felt smooth……it was gone!!! That means they were able to do the IRA and it was successful enough that I didn’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 “I got bad news…..you’re gonna have to go to the bathroom again!” Haha, it was her crazy sense of humor trying to tell me the surgery was a success.

My mom with me in the hospital room.

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.

Using the breathing apparatus to keep my lungs clear.

Walking around the halls with all the machines and tubes connected to me.

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’t sew it shut, since it’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.

The hole in my stomach.

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’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.

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.

Home from the hospital with my bandage still on.

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’t start work for 4 weeks.

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’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’t account for the rest of my life! Haha.

One week post-surgery.

One month post-surgery.

Seven weeks post-surgery.

Seven weeks post-surgery. Mostly healed!

These posts might also help out:

• December 20, 2009 -- New website for gay people who are affected! (5)
• July 15, 2009 -- Don’t Ask, Don’t Tell (12)
• June 20, 2009 -- Stoma Retraction (or, changing my flange 8 times in 24 hours) (5)
• June 19, 2009 -- Colitis to Dysplasia Surgery (1)

So my 2nd surgery is coming up pretty fast. It is one week from tomorrow (March 4th). I can’t believe how fast time has gone since my 1st one. I’m not really nervous this one at all, and I’m almost excited, because I know after I get this one, I only have one more to go and then I can be done with all this! =)

Also, as some of you may know, my partner of 2 1/2 years left me a month ago, recently after my first surgery. I don’t know if he was open enough to tell me he couldn’t handle it all, but I figured it was that anyways. Unfortunately we are still living together, because I am on his insurance. And I also have to be nice to him, because I feel that if I’m a jerk (like a wanna be), he holds my future health in his hands and he could drop me off his insurance any time. So now I’m rushing to get through these surgeries before our lease is up, so we don’t have t0 sign a new one so I can keep the insurance. It’s all very frustrating, but I know it will be over soon and I will be happy and healthy in a matter of months and able to find someone that can love me for who I am (no intestine and all!).

My 3rd surgery should be sometime in May and I’m excited for that, because I will then have my bag off in time for summer and I can finally start excerising again and get back into shape. As of now, my plan is to do a trip of Europe. I got sick right out of college, so I never really had any time that I had no commitments. But now, I have no school yet (I plan on continuing grad school in 2010), I have no career (just a part-time job at a restaurant), and I have no relationship to hold me back. My life is totally open and I have the entire world in front of me to do anything I want. But planning this trip is crazy, so if anyone has any ideas of where I should go and what I should do, please let me know. I plan on going for at least 3 weeks, so I can have plenty of time to do alot.

Most Commented Posts

• July 24, 2008 -- Our Message Board (827)
• May 11, 2008 -- Photos 1: Colectomy (98)
• May 11, 2008 -- Photos 3: Jpouch (97)
• February 13, 2010 -- Take a walk in my shoes (93)

These posts might also help out:

• September 2, 2010 -- My Foster Bag Wants to be Adopted (6)
• August 11, 2009 -- Pure Citrus – Life saver (1)
• March 9, 2009 -- Relationships & Chronic Illness (4)
• February 5, 2009 -- Love & A J-Pouch…And Crohn’s… (5)

Boots after surgery with ostomy

I finally got around to posting my pictures. After I put up my post, but hadn’t yet uploaded my pictures, I got a virus on my computer and it was in the shop for a week. The same day I got it back, my sister went into labor and we had to head down to North Carolina and were there for a week. Now I’m back and I got around to posting. Hope you enjoy them!

Check out Boots’ UC Journey…..I’d love to hear from you so feel free to contact me!

These posts might also help out:

• April 5, 2010 -- Home from Surgery #1 (1)
• February 19, 2010 -- Blood, Poop, and Tears (3)
• February 8, 2010 -- A little insight on my insides. (13)
• December 13, 2009 -- Welcome Lisa to the “No Colon Club” (1)

Men in Boots

Hi, my name is Mike and this is my story of living with UC and having the surgery. The unique point of my story is that I’m a 22-year old gay male, and so, living with an intestinal disease has had a rough effect on my identity as a gay man and my overall self-esteem.

I was diagnosed with a severe case of Ulcerative Colitis in February 2008. In December 2007 I started going to the bathroom about twice day

Read my full story here and pictures are coming soon!

Photo via: ljcybergal

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• March 27, 2010 -- Colston Thomas Mills (4)
• January 25, 2009 -- Jessalynn (10)
• August 17, 2010 -- IBS? Nah: Irritable Vowels! (0)