Boots’ UC Journey

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 (more than my normal), was having bloating after every meal and throughout the day, and was bleeding a little bit in my stool. No pain yet. I visited my doctor and he told me I had IBS and hemorroids from going to the bathroom more frequently and gave me some probiotics to take. Then in the beginning of January, the bleeding increased. Since my grandfather had colon cancer, my uncle has Crohn’s, and my aunt has colitis, I decided it was time to rush to the doctor again. He said the same thing and said that maybe I should get a colonoscopy if it got worse. I didn’t want a colonoscopy, so I didn’t schedule one right away. Big mistake.

In the beginning of February, I remember it was a Friday, I just woke up one morning and had bad cramps and was going to the bathroom like 3 times just in the morning. I went to the doctor that day and told him my symptoms and he gave me medicine to calm my intestines. He said that we should get me into a GI. We made an appointment, but I couldn’t get in until March 3rd (almost a month from that point!). I called him after two more days of severe cramps and said that I didn’t think waiting that long was going to work out. I was also talking with my mom about this and she called my family’s GI, who knowing my family history, got me an appointment right away.

During this time, I was hardly eating anything because it was causing such pain and bathroom issues. I remember visiting an IBS website and trying to get information there. I would cook egg whites and eat only those and white rice all day. I would also get a psychological nausea from the worry of food being in my stomach and it would cause me to vomit. I got to the point that I stopped eating right before I went back home for the appointment. Even putting my toothbrush in my mouth made me vomit, because I just didn’t want anything to enter my mouth. Needless to say, I lost 30 lbs (I was originally 190 lbs at 6 feet) and so I looked emaciated. I lost all color and was as pale as a ghost, and could hardly walk around because I was so fatigued. I knew it wasn’t good.

I got home in the middle of February and had an upper GI barium scope done and talked with the doctor. My colonoscopy was scheduled for 4 days later. I did the bowel prep (not good for my condition, because it made me totally dehydrated) and we went to the appointment the next day. They said that my heart rate too high (it was 130) and took some blood levels. They gave me something to calm me down (I didn’t notice any change) and put me in the procedure room and got me prepped. I was turned on my side and the scope was gotten ready (my heartrate at this point was about 143), but then a nurse came in and said they couldn’t do the procedure today, because I was too sick and needed to be admitted.

I was admitted to the Intensive Care Unit immediately, where I was visited by a series of doctors and told that my blood levels were 14 (where they should be about 42 for my age and body) and that I was severely dehydrated. I was given two blood transfusions right away and pumped with liquids. I was scheduled for another colonoscopy and endoscopy the next day. In the new procedure room, with my heartrate a little better, they got me ready. I was given a shot of a liquid to drink and it was to numb my throat for the endoscopy. It was scary, because right away after you drink it, your throat goes numb and you feel like you can’t swallow or breathe (which you can, you just can’t feel it), but then I was just put under right after.  I woke up after the procedure and the doctor came in and shook his head and looked flushed. He said it was a severe case of UC, one of the worst he’s ever seen. I was to be kept in the hospital in case I ruptured and needed emergency surgery. Needless to say, this did not make for a pleasant stay.

But the ICU is a very nice area, you get a private room and bathroom and the nurses are crazy about making sure you’re all set. My mother was a wreck and stayed in the hospital with me from about 7am to about 10pm. She was a blessing to me through all this and never let me be alone. I was right away put on Flagyl (in case I got an infection), Prednisone (grrrr), and 12 Asacol a day (for the inflammation).  Five days later, I was given one more blood transfusion and then released from the hospital. I was getting significantly better and there was no more risk for rupture. I stayed home for another month, as I was bedridden the whole day and was in serious need of recuperation.

The next three months were all about healing and getting back to a normal life. I got to feeling pretty good and for a period of about 3 weeks, I was going to the bathroom just 2 times a day. But I had a very limited diet and wasn’t doing anything too exhausting. Then in May, I started to get a little sicker. I was continually getting worse and we called the doctor and he said that we should get me on 6MP. I was on them for about 3 weeks and still not getting better and so we scheduled my first IV Remicade treatment for June. This was all at the same time that I was at about 10mg on the Prednisone. I went back up to 30mg for awhile and when I tried to taper again in July, I got even sicker and had to go home again for a month to recuperate. I did a total of 4 Remicade treatments, and could not get myself below 10mg on my Prednisone. I was told that I was steroid-dependent and that the medications were giving no results, so I should consider the surgery.

In August, I was scheduled for a flex-sigmoidoscopy. I had to do an enema bowel prep and the upsetting thing about this procedure is that your given no medication at all. You are completely awake and aware of everything. It’s really only about 5 minutes long, but it’s just uncomfortable, because of the tube up your colon and the air they push up there. My doctor said that the colitis was still very active and that he found a lump just above my rectum. A week later we found out it was stage 2 dysplasia. Stage 4 is cancer, so I was halfway there. Not good and this was only after 6 months with UC. He said I needed to see a surgeon immediately to either have my colon or the lump removed. So I had a choice: Do I have my colon out? (which at that time was the worst option possible) or do I have the lump removed? (with a large chance I would just get more lumps in the future and most likely get cancer within 5 years). I honestly couldn’t decided, but we made an appointment to see a surgeon at the Cleveland Clinic in Ohio. We drove from Syracuse, NY and talked with a doctor who said there was a new procedure where you could remove the lump and even dysplasia that couldn’t be detected yet. It was called High-Definition Microscopy. This was scheduled for the last weeked in September. Luckily, I have family that live in Akron, OH, so we stayed there for recovery. The surgery was very simple, it was an outpatient procedure and I didn’t feel pain, but I was just a little uncomfortable. But then again, I was living with anal pain for months, so how could I accurately detect how I felt?

We then went about a month without doing much, while doctors were talking with each other and figuring out what to do. I stayed at 20mg on Prednisone and it was nice to not have to worry about my future for a little while. Finally in November, we talked with the doctor at the Cleveland Clinic and he said that I needed the surgery. There was no question. He said the medication was going to do more damage to my body than the disease and that already pieces of my large intestine were decaying off and coming out in my bowel movements. The surgery was scheduled for December 10th, 2008.

It was going to be a 3-part surgery, done laporascopically. First, I needed to have my entire colon removed and be given a temporary ileostomy. There also needed to be time for my rectum to heal from the UC.  Second, they were going to create the J-pouch and connect it to my healed rectum, but keep the ileostomy and give the J-pouch time to heal. Third, they reverse the ileostomy and make sure everything flows through the J-pouch nicely.

I was in a state of confusion and terror for about 3 days and then I just got back to my normal life. I decided that if I didn’t think about it, I didn’t have to think it was going to happen. Or I would pretend that it was going to happen to someone else. I didn’t really tell my friends, because I didn’t want to talk about it. But it still affected me. I couldn’t really tell, but I was making mistakes at work that I would normally never do, and I suddenly lost all care for the troubles of others. I had that “can it be worse than what I’m going through?” type of attitude. But at the same time, I would see the news and look at how many people had it worse than me and I would just be thankful for that. It was a very confusing time. I had been seeing a homeopathologist since July and I was telling him about my feelings and he helped me work on that aspect and gave me remedies to try and get my mind on the right track. That definitely helped me out.

A lot of my issues in dealing with UC and dealing with the surgery was because I’m gay. Having frequent bowel movements and bleeding made me feel extremely unattractive and I lost almost all of my sex drive. I have been with my partner for over 2 years and he’s been with me through all of this, but it still put a strain on our relationship, because I don’t think he understood for a while how it made me feel. He may have been confused why I didn’t want to be intimate. And if I had to get my large intestine removed, that meant that a part of my sex life would be gone forever and I would never be able to experience it again. That was a huge thing for me to have to deal with, because that meant that I would be healthy, but I had a huge loss as well. I thought about this for quite a while and realized that I wasn’t sexually active with the UC anyways, so what would really change? I never talked to a gay male with UC, I always talked with straight people who had the surgery and they would keep telling me get it done, because it would be the best thing for me, but it was hard for me to tell them why I didn’t want it. I wasn’t scared of surgery or pain or having a bag or anything. I was scared of losing my gay identity. Until you use your colon for sexual purposes, you wouldn’t know the dilemma of having to lose it. And then there’s the part of having to tell every sexual partner in the future and having to go through all that and making them wary of being sexually active with me. I always thought that I would feel unwanted and just decide to be single for the rest of my life. But I had many talks with my partner and I felt that if he didn’t mind, then I could deal with it, because I’d already planned on being with him for the rest of my life. So I wouldn’t have to deal with telling anybody in the future. I had the right amount of support.

One week before the surgery, I had a party at my apartment with all my friends. It was a “Goodbye Large Intestine” party. It was a blast and it was great to see my friends and we all made a good time from a bad situation.


So came the time for me to leave for Cleveland for the surgery. The day before my surgery, I had 7 appointments to get me admitted and assess my condition, etc. I had an EKG, bloodwork, a physical by an internist, and therapy with a stoma nurse. They were all very easy appointments and were very fast. The stoma nurse showed me an ostomy bag and how to use it and then make a mark on my stomach for where the stoma would be.

The night before surgery and the mark where my stoma will be located.

The night before surgery and the mark where my stoma will be located.

When we got back to my aunt’s, I started the bowel prep, which was much easier than the colonoscopy prep. You could use gatorade this time and the bathroom habits weren’t any different than what I had to deal with the past year. I had totally accepted the surgery at this point, and so when I went to bed, it was easy for me to fall asleep, knowing that the next day I would no longer have to deal with pain everyday.

I woke up on Wednesday, December 10th and showered and looked at myself in the mirror, observing what my stomach looked like for the last time without a stoma and scars. My uncle drove us to the hospital and we got ourselves checked in. They called us back and got me in the prep room and got the IV started and gave a heparin shot to slow blood clotting. The shot burned going in and kind of felt like someone punched me in the back of the arm.


Waiting in the Pre-op room to go into surgery. Nervous, but ready to be healthy!

I was then wheeled outside the OR room, where an anesthesiologist talked to me about the usual questions they ask you 100 times in a hospital (allergies, anything to eat/drink, any pain, any problem with anesthesia, etc, etc…). i was then brought into the OR. There were a bunch of people getting things ready. They were all very concerned about my comfort and were very nice. The main nurse said that she had this surgery done 12 years ago. That made me feel better knowing I had someone there with me who had been through all this. They gave me medicine that made me very tired and loopy and put an oxygen mask over my face, then I slipped into unconsciousness.

It seemed like two seconds later that I woke up and became aware of my surroundings. I hadn’t opened my eyes, but I could still feel the breathing tube down my throat. I was still medicated so I didn’t mind it much, but I remember them asking if I wanted them to remove the tube. I nodded my head and they took it out. It didn’t hurt, and it only felt like it was 3 inches coming out, but like I said, I was still medicated. I was constantly taking deep breaths and trying to move my feet, because I know they say that’s the best thing you can do after surgery. I was there for about another 45 minutes and they brought me to my room. My mother was waiting outside the door with my sister, who flew in from NC. My mom started crying when she saw me and started squeezing my hand, and it made me start to cry, which hurt my stomach, so I tried to stop. I think we cried because we’ve been through this from the start and this was the end. They were tears of joy.


Just getting into my room after the surgery. I was pretty awake.

I got set up in my room after that. It was a little hard getting to the bed, because you have to slide over and that uses a lot of stomach muscles, but the nurses were very helpful and did most of the work of pulling me over. I stayed awake the rest of the day and didn’t really feel that tired. I figured it was because I was finally healthy, and so why would I want to sleep through it? Plus a lot of my family had driven to Cleveland to be with me and I wanted to stay awake to see them all. The nurses were constantly coming in and checking on me, which was nice. I had the morphine drip, and it was set at 6 minutes. I pressed it about every 10 minutes though, just to make sure I stayed ahead of the pain. I said my pain level was about 3 or 4, because it wasn’t really pain, it was just like an ache.


The stoma nurse changing my bag.


Picture of my stoma and scars.


My first cup of coffee in over a year. How I missed it!


My first time walking. Ouch! But it got much better after that.

I remember sleeping great in the hospital too, because I had a great bed and I didn’t have to get up to go to the bathroom anymore! It was very strange not having to do either bathroom visits (because I had a catheter too). I had bloodwork done every morning, and two heparin shots a day. These were a lot less painful than the first one because I was on morphine. I had three band-aids over the wholes in my stomach and a gauze pad over the one on my pelvis. It was all very minimal. I didn’t have a drainage tube, which I didn’t notice until two days later. When I asked the nurse, she said that some people don’t drain as much and I probably didn’t need one. I saw the doctor each day and he was happy with my progress and gave me pictures of my large intestine (I asked if I could keep a part of it, but they wouldn’t let me).


My whole large intestine.


My large intestine cut open. There was a lot of disease.

I was released from the hospital on Saturday, December 13th, so I was only there 4 days. They said I was doing very good and that there was no reason to keep me there. I had bread and pasta for dinner that night, which may not have been a good idea, because I had a blockage later. It wasn’t bad at all, but I felt pressure in the area of my stoma and I was having no discharge. I tried the positions your supposed to be in, but it was hard since I had just had the surgery. I stopped drinking just in case, and went back to bed at around 2am. I woke up at 6am, because I felt some gas and saw that my blockage had passed. I was very relieved and fell back asleep. I have not had a blockage since. I just layed around for a couple more days and we finally started heading back to Syracuse on Tuesday, December 16th. I kept it easy for while and was watching movies and playing Wii, which my family gave to me as a goodbye large intestine present!


Going home!

Each day from then on got better and better and I took my bandages off and was now proud of my little scars. I showed it to everyone that wanted to see and kept a positive attitude about everything. Compared to the pain I had to live with everyday, healing was easy. It was some great rest time and family members were always visiting me and keeping me busy. I got used to changing my bag very easily and never had any other problems with my stoma. I’m now almost 3 weeks post-surgery and my scars are healing great. I just went to the mall yesterday, which was my first time driving and my first time out. It felt great and I felt like i had more energy than I’ve had in years.


All the medication I used to have to take. It was sooo good to throw them out!


2 weeks post-surgery


3 weeks post-surgery. My first time going out to party for New Year's! And my stoma was hardly noticable. And my room is NEVER this messy. I'd had a crazy couple of weeks and this was a bad angle, haha.

55 Responses to “Boots’ UC Journey”

  1. avatar

    David says:

    January 13th, 2009 at 8:47 pm

    Hey – I just wanted to say, I can empathize with you. I am a 20 year old gay male, and had UC when I was 15, soon getting the surgery because of it being a severe case. I went through much of what you described, though I still am single. I now am much more confident, even though I still have minor complications and go to the bathroom many times a day. I am just glad I am healthy and all that is over with. I have been living with the J pouch surgery for 6 years now, and feel like it has changed my life. I still have some self esteem issues, and I think this is a part of the reason am not as open to a relationship. I am still very active, as I always have been, and have been excelling at school, on my way to getting in to veterinary school. Did you get the J pouch/plan on getting it, or just the ostomy?

    Nice to meet someone in a similar boat!!!



  2. avatar

    Boots says:

    January 15th, 2009 at 3:55 pm

    Yeah, I’m getting the J-pouch. I’ve only had step 1 so far, but I have to get in done in 3 steps, so I still have several months before I should be back to being healthy. Thanks for resonding, I’m glad to see that there is someone out there with a similar story! =)



    Pedro Reply:

    Hi Mike! My name’s Pedro. I am 40 years old and I’m from Portugal. I have been colostomized for 4 months. I have been having trouble dealing with my colostomy and my J-pouch. I’m stil an optimitic guy and I stil have a lot of dreams! I would like to hear from you! My email is


  3. avatar

    Jenelle says:

    January 18th, 2009 at 3:29 pm

    Hi Mike,

    Thanks for posting all those pictures! I realize that I have to take more pictures through the next surgery. I hope you’re doing well and I look forward to following your story.



  4. avatar

    Dennis says:

    January 20th, 2009 at 11:17 am

    Interesting pictures of your colon. Is the yellow stuff some kind of fat tissue attached to the outside or is it back of the colon? Looks like it was pretty bad!


  5. avatar

    Boots says:

    January 20th, 2009 at 4:52 pm

    The yellow stuff is mesentary and fat tissue that connects your colon to your abdominal wall. I didn’t realize there would be so much, but I don’t need it now that my colon is gone.



    Lori Reply:

    hi, my name is Lori(49 yrs old) and I have battling pain in my right side for years, I had a colonoscopy last week which they took out a polyp and took pictures of my colon, i have lots of yellowish glumps attched to my colon wall…so the yellow stuff pretty much normal? they havent told me the results yet, and I am very nervious and scared…my right side is still painful…

    ps..thanks for your inspiring story-truly an amazing young man…God bless


  6. avatar

    lisa says:

    January 22nd, 2009 at 10:38 pm

    hey, your story is so inspiring. it really brought many tears to my eyes and i think you look adorable with your little glasses on in the hospital. i had half my colon taken out last march, but will find out in 6 days if i am going to get the rest out with the j pouch. you are a lot tougher than me, my god! i was sick for a while after and def did not go out any time soon. i hope you are going out and things are working out well for you now. lisa


  7. avatar

    Boots says:

    January 23rd, 2009 at 8:49 am


    Thank you so much for your comment. That’s the type of reaction I hope people will get. I found that once I realized how necessary it was, it was easier to deal with. I’m young and my energy bounced right back after the surgery, so I think that’s why I was able to do things quicker. And when you go from being a hermit because of being so sick, and then getting healthy, you just want to go out and celebrate it. Good luck with your results and I hope that in the end, no matter what you have to get done, that you are healthy and feel it!


  8. avatar

    Redheadedmama says:

    January 23rd, 2009 at 1:05 pm

    You look so much better than I did while in hospital! I’m jealous. I did always wonder what it would be like to be a gay man and have to go through with the surgery – it makes intimacy hard enough for us straight folks – so thanks for sharing. The photos of your colon are really interesting, so thanks for posting. I wish I’d thought to ask them to take a photo of mine. I’m glad you are on your way back to getting healthy. Isn’t it great not to have to take all those awful pills anymore?


  9. avatar

    WholeHeartAndSoul says:

    January 23rd, 2009 at 6:02 pm

    Oh Boots – thanks so much for sharing what you’ve been through. We have some things in common – I was diagnosed with a very severe case too – your pictures of your colon look a lot like mine! And it sounds like we both have very supportive partners – thank God! I hope your healing and recovery continues to go well. Keep us updated! Abby


  10. avatar

    Brevin says:

    January 24th, 2009 at 11:49 am

    Wow, thank you so much for sharing. I’m actually sighing with relief right now. Ah it feels good.


  11. avatar

    Maria says:

    February 20th, 2009 at 10:46 pm

    Your story is heart warming! I’m glad to see you are doing well. I suffer from uc and I know you know what i mean when i say suffer. I’ve had uc for 9 yrs and just a last week my GI doctor sent me to a specialist at the Cleveland Clinic. She said my case was severe and I have an appointment on Wed. with a surgeon at Cleveland Clinic. We have an 8 hr drive one way and it’s not an easy trip. Do you have any suggestions on how to make the drive any easier? Also how long after you have your consult were they willing to do the surgery? I’m at my wits end and need relief soon!!!! When we went for our first trip to Cleveland I thought it would be pretty quick but, we were there for a week doing all kinds of torture i mean tests. The cost of the trip was more than what i thought it would be. If i can get back my life I will pay anything. If you have any problems who do you go to now your GI or Cleveland? I have issues with that i’m afraid if anything goes wrong i will be 8 hrs away. I know this email is all over the place. I have so many concerns! If you can give me any insight i would be so appreciative. My email is


  12. avatar

    tony b says:

    April 12th, 2009 at 8:14 pm

    hi, thank u for sharing your story with the world. im glad im not theonly gay guy thats is going through this somewhat simular situation. well im 24, and i as diagnosed with ulcerative colitis when i was 11. ive had good days and bad days,but i am respectfully greatful that it hasnt gotten worse to the point where i needed surgury. i have been with my partner for 4 years and he is very supportive with my condition. the part that affected me the most was taking prednisone when i was much yonuger, making me gain a significant amount of weight and stunted my growth. im 5’6 but was told i would have been around 6’2…but now im fine, medication free… and since im not on steroids ive lost the wwight but the only thing that bothers me is arthritis.
    god bless you and all others out there that has any relation to this condition. youre not alone. thank you. yahoo messenger-txramel


  13. avatar

    rich says:

    August 6th, 2009 at 6:29 pm

    hey there
    im going through the exact same thing as you except i havent got a boyfriend there to support me im on my 2nd op and am having my 3rd on 11th sep 09 i am suffering with the gay thing whith no one to talk to the only way ive found thing out to do with being gay and having a j pouch is by ready your story (thanks) im finding it hard (mentally) how did you manage to cope with getting use to this situation? cos i was 22 (now 23)when i feel ill and had to have a quick operation so had no say or any chance to find things out any info apart from what they told me but there is no leaflet on being gay and having a j pouch, they told me on tuesday i was having the operation on friday so i dont think that has helped with my situation, would you have chose differently or do you stick by your guns?
    thanks again rich



    booties4986 Reply:

    Hi Rich-



    rich Reply:

    hey there hows thing with you now ive had my finale operation in september i was so surprised how i was after it i had a bad night where i lost a lot of blood but the next day onwards has been great i was panicking about a lot of things and to be honest so-far everything been great i have the odd day when it takes over but that not that often i had no problems holding or even the amount of times i go which makes me fill at ease which having the operation and im just glad not to be in all that pain hope all is as good with you


  14. avatar

    Cal says:

    September 28th, 2009 at 4:44 pm

    Interesting to hear your story! Had 2-part J-pouch surgery 5 years ago, when I was eighteen, and before I came out. My stoma nurse was gay, but all the advice and information I was given was completely assuming everyone was straight. Sounds like you had a good team looking after you.



    Glenn Reply:

    Hi Cal
    How are ya doing now, I need to have a Urostomy.


  15. avatar

    Jonnie says:

    October 5th, 2009 at 4:26 am

    Hey there 😉

    wow, thanks for sharing I’ve been needing to read some positive stories from other gay males with a similar problem as myself. I’m 26 and I was diagnosed with Colorectal Cancer a few months ago…. it was all a mad rush as soon as I was diagnosed I was in surgery about a week later to remove the tumour.. and I’ve had a jpouch put in and a temporary stoma. Being a gay male who spends most of their time working out at the gym and doing a bit of modelling here and there…. the idea of having a stoma made me feel like it was the end of the world! My surgery was 6 weeks ago now and although im not a huge fan of the stoma (and very looking forward to the reversal operation!) I’ve become much more comfortable with it AND especially after reading your story. I’m sitting here reading your story and nodding my head at everything you’ve said about how you felt, and the steps you went through in hospital etc.

    Anyway I just wanted to say thanks and I hope your enjoying your brand new healthy life! It was not until my health was jeopardized that I realized what an amazing thing it is to be healthy!!

    Take care :)



    Bret Reply:

    Jonnie, can you tell us what your life with a J-pouch is like?

    How often do you bottom?  What is it like?


  16. avatar

    Mario says:

    October 13th, 2009 at 12:50 pm

    Hey dude. You are awesome to post pictures and all on the net. So people with UC can see and read that there is light at the end of this dark tunnel. I am 27 i have had my j-pouch since i was 20. I am normal as can be. I can go play basketball, run, and my favorite body board when there is good surf. I am very carfeful of the food i eat also. I do not eat fried food. Or Pork. Remember to add organic YOGURT to our diets. VERY IMPORTANT. I remember the first time being able to eat after my surgery and i had a IHOP style breakfast that tasted orgasmic. If your UC is bad go do it.


  17. avatar

    booties4986 says:

    November 24th, 2009 at 12:32 pm

    Rich, Cal, Jonnie-

    Sorry, I’ve been very busy these past couple months (I’m now working 2 jobs!) so I haven’t been on this site as often. It’s really, really good to see that you guys have read my story and you were going through the same things I was. I would love to speak with you further on this issue if you want. My gay life if 90% normal now and I can give you the details on that when we speak personally. Feel free to contact me by e-mail at I look forward to speaking with you guys!


  18. avatar

    Michael says:

    December 20th, 2009 at 6:05 am

    Hey Mike. Thanks for sharing your story and pictures. And thanks to all who have replied with a similar experience- I honestly felt like there was no one else like me out there so it’s good to hear from you guys! My name is Michael and I’m a 25 year old gay guy from Melbourne, Australia. I was diagnosed with ulcerative colitis in 2000. In 2002, after many hospital admissions, I was still so sick that I underwent ileoanal anastomosis, or j-pouch surgery. I had two separate procedures, not three. Mine wasn’t done laparoscopically so unlike you I have a hideously massive scar down my stomach. I too had dysplasia in my resected bowel so I was glad to have it out before it turned cancerous! The operation was a success in that I never again have felt as terrible as I did back then. I do however suffer from inflammation in the j-pouch and take antibiotics daily to control my “pouch-itis”, as my gastroenterologist calls it- I’m not sure if that’s an actual medical term! In the 7 years since then I have never felt 100% healthy but I do have a distinct cycle of flare-ups where I feel worse than at other times- though nothing like the debilitating pain and cramps I had before the surgery from the UC! I also have a colonoscopy and gastroscopy check-up once a year. Right now I am feeling particularly unwell and am using the bathroom up to 5 times a day and pass loose stools (pretty standard for me). The past couple of weeks I have also passed blood with them most of the time. I guess I wouldn’t usually disclose such information but I figure I have the anonymity of the internet to protect me and what I write may help other readers in the same situation. I am not writing this for sympathy because I don’t want any- I simply wanted to share some background info before I address what I really want to write about- gay male sexuality and post-op UC patients! In any case I am seeing my gastroenterologist tomorrow for my regular appointment and am due for the colonoscopy, so I am looking forward to a reassessment and hopefully will be feeling better soon.
    I really have to say how utterly disappointed I am with the lack of information out there regarding gay sex post j-pouch surgery. Over the years I have tried to find information on the net regarding this and have always reached a dead end. If anyone finds or knows of related resources please post the links here for us to share! Personally I have tried to talk about this with my gastroenterologist with embarrassing consequences. I also think the majority of readers would not feel comfortable talking about this with their doctors. My experience three years ago went something like this… I randomly blurted out at the very end of my consultation that I wanted to experiment with my sexuality and asked whether or not I could engage in receptive anal sex. I could tell by my gastroenterologist’s face, after the expression of initial shock subsided, that he didn’t really have a clue. He said that he wouldn’t recommend it but that if I was going to that I should use plenty of lubricant and to be careful. Not at all satisfied with his generic answer and having already swallowed my pride, I pressed him for more details despite his obvious discomfort… I then asked him if he had any personal knowledge of gay male patients who have had the j-pouch surgery and their sexual experiences, only to have him misunderstand me in his flustered state and think I was asking him if he had any personal sexual experiences with gay male patients! Oh my humiliation! It took me a good six months before I could look him in the eyes again and we never spoke of gay sex again! That story aside, my sexual history is a bit different to that of yours and most other readers. You see, I had not had sex before I was diagnosed with UC in 2000 at 16 and when I had the surgery at 18 in 2002. In fact I was fiercely closeted even though I always knew I was gay. My point is that I have no idea of what it is like to be penetrated when healthy with all your organs in place! Do you see my dilemma now? Fast forward to 2006 to a time when I had ‘come out’ and was ready for a lot of penetration :) I guess I felt like I had a lot of lost time to make up for but would always top and never bottom with my sexual partners. I was actually so paranoid about my surgical and stoma scars that I would lie to my partners and say I had to have emergency surgery for an infected appendix (yes, I know I have issues!) Anyway, it wasn’t long before I found my partner and we have been together in a monogamous relationship for over three years now. The problem is that we both identify as tops (although he would have to be at the very least versatile considering I top him the majority of times and did so exclusively during the first year of our relationship). He has been very understanding and supportive but our sex life is the cause of a lot of arguments. Psychologically I feel like I want to be penetrated, however when I do bottom for him it is really painful (sometimes unbearable). My problem is I don’t know if the pain is a result of the surgery or my condition, as I didn’t have anal sex before the surgery to be able to compare to. I know that there are gay guys who top or bottom exclusively (or are versatile) and I’m not sure what my position would be where I healthy. The penetration is the most painful part. When his penis is inserted all the way it is a little less painful then. He does have a thick penis so I guess in my case that doesn’t help! After the full insertion it is usually bearable when he thrusts and sometimes I even actively enjoy it. In fact sometimes he can make me orgasm from anal sex alone. I guess on average over the course of our relationship, he would penetrate me once every two to three weeks. Sometimes he will penetrate me a couple times a night and at other times a whole month can pass before I have receptive anal sex. On the whole (no pun intended), it would be a minority of times that I enjoy it completely from start to finish and it is now the cause of a serious strain in our relationship. You know you have a problem when you feel glad after receptive anal sex that you have it over and done with and will not have to do it again anytime soon. I do want him to penetrate me, however I don’t know how to deal with the pain. Is there anyone out there who knows if this is normal? If you even can have normal receptive anal sex after j-pouch surgery? Or if there is anything I can do to be able to bottom? I don’t think I have a low pain threshold because I dealt with a lot of pain from the UC. I also don’t think it is psychological, even though I know I am more relaxed and find it more enjoyable when I am not stressing about being dirty or having an accident etc. Now that I think about it I would have to say that the pain is similar to that I experienced prior to surgery when I had a serious urgency to use the bathroom. Is there anything I can use or try maybe -does anyone know if those anal conditioning gels with anaesthetic work? The bottom line is… CAN A GUY GET PENETRATED AS OFTEN AS HE WANTS TO AFTER J-POUCH SURGERY???
    All responses greatly appreciated. Also to Thanks for reading this extremely long reply! All the best guys with your health and sex lives too! Cheers, Michael.



    Mark Reply:

    Hey Michael, I’m sure Mike Boots will be in touch with you to discuss his experiences but I thought you might like to read some of the posts from on GLBT concerns – here is one specifically on anal sex also here are some other posts on gay and sexuality with a jpouch – and here are a couple pages of posts on “anal sex”



    Michael Reply:

    Thanks for the links mate. It’s good to know that there are other guys out there with the same concerns and wanting to talk about it. It’s so disappointing that information addressing gay sexuality and j pouch surgery is not made widely available. I don’t know what the numbers are but if you assume that this surgery has been performed on tens of thousands of people worldwide, that half of them are male and that 5% (conservatively) are gay, that is a lot of people who are left in the dark about their sex lives and gay identity!



    Megan Reply:

    Michael – be sure to visit Boots new website for GLBT living with IBD or jpouch


    Jeff Reply:

    Hi Boots and Michael and All.. I have some experience and information. I am a 41 year old gay male j-pouch recipient and formerly a total bottom. My surgery series was in 1995 when I was 26. The pouch I have now it nearly as old as the oldest one in existence when I had my surgery. Like the rest of you, i did not have much choice as I had severe UC that left me debilitated for 4 years before agreeing finally to the surgery. The main reason I put it off back then was a lack of information about anal receptive sex for gay men post surgery. I felt then that I would loose an important part of my sexual identity and pleasure. (I have at least in part.)
    I had very frank discussions then with both my surgeon and a personal friend who is also a colo rectal surgeon. I even explained it to my dad, who was great. What they surgeons said then was try. There was no real information to be had then and I am surprised now how little information there is so I’ll tell you about my study of one, me.
    Mike, normal peri-anal tissue and inner rectum tissue is quity stretchy. Surgically unaltered gay men do have to learn to relax both thier innner and out sphincter muscles but after this they do not generally experience anything but extreme pleasure from anal receptive sex. The peri-anal tissue stetches easily and the sphincter muscles relax and the prostate pleasure is amazing. The challenge for bottoms with jpouches are multifaceted. The connective tissue just inside your anus is now scar tissue. You have an entire ring of this scar tissue just insite your anus. You or your partner can feel it with a finger. Scar tissue in just not as stretchy as the OEM tissue. Its hard and unforgiving compared to what you had originally. Essentially, if your partners penis circumference is large than this not stretchy ring of scar tissue, you are unlikely to take him without severe pain. Second, as you know, the pouch is nearly constantly filling with liquidy or pasty material. A quick shower douche works well for getting you cleaned out but if your intestines are working quckly its just not going to work no matter how quickly you get to it. Another important consideration for jpouch bottoms is that bleading is MUCH more likely. That scar tissue ring rips during receptive intercorse as opposed to stretching. It is a major gateway for HIV and other infections. You are at a much higher risk for infection for if you have a condom break. Also, your pouch may have been attached with steel surgical staples not sewn stitches. On me,these took a full 10 years to work their way out one at a time. They are fantastically effecient condom puncturing and ripping bastards. Doctors doing j-pouch surgeries on gay men should not use surgical staples internally if avoidable. Sew baby sew.
    I can still experience extreme anal/prostate pleasure without any pain but the tool needs to be much smaller than the average male penis in this country. I have tried many many small toys with my partner and the absolute best by far is the SMALL size aneros. (about $100.00) and it has to be special ordered because your local gay sex store tends to think that only larger is better. The feeling is amazingl but the problem is that if I stretch my inner scar tissue frequently with said toy or anthing else, I will experience leaking at night while I sleep and sometimes during the day. All white underwear was retired years ago in favor of Calvin Klein black. I don’t have any leakage or seapage issue unless I have been engaging in some sort of receptive butt playing. For the first several years post surgery I also experience frequent pouchitis bouts if my partner had been rimming me. Sorry for all you straight readers but graphic is required here… just being brutally honest so that few guys like us have to wonder what the real dealio is. For the most part, I just miss being able to bottom like I used to. It is occassionally an issue for my partner who frequently whines about what he would like to do to me. It hurts my feelings to even hear it and I find it frustrating that I cant get penetrated like I used to be able to. I have to fantasize about it mostly. It is an issue for me more than him and I cannot seem to get it into his head that his talking about what he is missing just makes me feel really inadequate and essentially it is in reality the realization of my worst fears when thinking about this in the early 90’s. I did date someone for 6 years after surgery who identified as a total 100% bottom. This was also an issue because he never wanted to do anything to stimulated my prostate, although he was coachable. The bottom line is that yes, there will be a loss and you will learn to live with it. There are some work arounds required but you will definitely have a full and satisfying sexual life but you are not ever likely to be a power bottom seeking giant cocks to penetrate your j-pouch.


  19. avatar

    Welcome All!!! « The Gay Digest says:

    December 20th, 2009 at 10:18 am

  20. avatar

    Joe Collins says:

    August 8th, 2010 at 6:03 am

    had jpouch since 2005, am a chef and life style designer. i have lots of things i have put together to live with a pouch. Diet, Exercise and Clothing.
    Would love to work with you and assist others living with ostomy or jpouch


  21. avatar

    Denny says:

    June 3rd, 2011 at 4:20 pm

    I am a newby. I am also a gay man. I am having a colonoscopy done in 2 weeks. I have lived with colorectal cancer for 5 years done the chemo and radiatation therapy which burned out my spincster muscle. I depend on depends 24 7. I hate to go potty due to severe pains. Morhpine just does not touch that. I am lucky that my Dr finally said lets get it done with NOW. I go in on the 16th of this month and I will be in hospital for 3 days and sent home. I can hardly wait to be pain free again. I am so estatic. Thanks for sharing your story.


  22. avatar

    Jeffrey Naughton says:

    June 4th, 2011 at 5:33 pm

    Hi Denny:
    Your life is about to get much better. I am guessing that you are scheduled or a colectomy not a colonoscopy. Which means you will have a colostomy bag instead of depends. What an improvement that will be!!!

    My friend Bill E, a gay man has a bag instead of a J-pouch and he does just fine. And he is hot! Because I was so sick before I had my first j-pouch surgeries I opted to have a ileostomy bag for 7 months before my j-pouch. It was no big deal and you will feel GREAT. An important discussion to have right now with your doctor is keeping your rectum. You are not a candidate for a j-pouch because you don’t have muscle tone in your sphincter due to the chemo and radiation as you said. However if you are cancer free and you do not have active UC or Krohns you can keep your rectum for sexual purposes. The surgeon would give you a normal colostomy or ileostomy stoma over which you will attach your bag. Normally they also remove your rectum and muscles around it. This is the bulb shaped organ just inside your anus and is the area where a penis goes during receptive anal sex. But unless is is cancerous or an active source of UC or Krohns it does not have to be removed . it can be left in place and the top part (which used to connect to the colon) is sewn off. It would no longer be used for stool just sex. You body would likely secrete a minimal amount of fluid as normal in the organ and it might occasionally make a clear serum spot on your underwear but it would not be acidic or painful. You would also likely keep it cleaned out with a shower douche once a day, they way a gay man often uses a shower douche before having anal recepteive sex anyway. You would still need to have this area checked annually or so for any signs of the return of the cancer but wow… you could still have regular anal sex whenever you wanted and you would be the cleanest lay in town. :) But you must have this brutally honest discussion NOW with both your doctor and your surgeon. You might want to just cut and paste my comment. Its a very hard discussion for anyone to have especially for a younger gay man like yourself. You can email me directly at Truckee Jeff at g mail dot com if you want to correspond directly. From there I’ll gladly send my telephone number to you as well if you want to talk at all. Please let us all know how things turn out.



    Denny Reply:

    Thank you for your reply. Please excuse my spelling. When I am in pain I can’t seem to function too well nor think rationally. I do need a friend to talk to. I have a room mate but I do not like to discuss personal stuff with him. I have not told anyone what my plans are except right here… Well, that’s not true. I did tell another gay friend this idea to get this done and he was super worried due to not having an immune system. He does understand my main focus is to just be pain free once and for all. To tell the truth I feel less than a man. My circle of gay friends all know I had anal cancer and the hell I went thru. They have been super supportive however I have not let on to them the pain. I kept that hidden as much as possible. If I was invited out somewhere the first thing I’d do is locate the men’s room. Course of habit. I never ever left my home without a change of clothes nor cleaning supplies as well as new depends. I toted them around with me religiously. The day I saw the Proctologist a friend went with me. I explained my dilemma to detail promptly begging for him to do something to take the pain away. He did an exam. He then gave me two options. I decided on the bag approach. I did not realize that as soon as he said it that I had already decided without any thought to it. Just asked him when can we get this done and over with. I want it done yesterday but I can manage a few more days . Right? I did 10 weeks of chemo and 4 weeks of radiation. The last 4 weeks I spent it in the hospital burn ward because the radiation burned be severely. Did I mention I had Avascular necrosis (AVN) of the femoral head a hip joint disease that made my ball joint crumble. I had to have bi-lateral hip replacements. Prior to any anal issues at that time. I sort of went downhill thereafter. In this process I also had anal surgery to remove some cancerous legions and because of that my sphincter muscle was accidentally cut out too. That prevented me any kind of poop control. I just went whenever wherever on the go all the time. Make having any kind of life hard to manage.
    You are right I do need to face up to it and have this discussion with my Dr more so in detail. With what we already discussed I am comfortable with how he explained it using wall posters and mini hand gadgets on a table to explain what is what and what its for and its use. I think I sort of got a fast track lesson. My fear is going under the knife…I’ve had some mishaps in the past that had to be repaired. I still carry the 6 inch scar on my belly (open wound healing from inside out) as a constant reminder of a complete “F” Up. Another attempt to remove a golf ball size tumor from my anal cavity and colon. Ok let me talk SEX… I have not had any kind of SEX since 1994. What ever the Dr did to me I cannot get an erection nor can I have an orgasm and very little ejaculation fluids come out. I do have the pulsing sensation once in a blue moon if I really try at it but not always. Everything down south has changed. My penis size has shrunk. I never get a full hard hard on. I have not tried viagra but seriously thinking it might help. But with all this anal stuff going on its really hard to get IN the mood.




    Jeffrey Naughton Reply:

    Hey Denny, just checking in and wanted to share a detail that may be another great life changer. I recenlty met a SUPER hot stud that had the worst case of erectile dysfunction ever. Viagra, Cialis and whatever that third one is do nothing for him. He explained to me that there are essentially two normal chemical responses around erections. One chemical tells your dick to get hard, the other tells it to relax. Viagra and the other vasal dialators he explained sort of block the actual chemical that says… “Hey dick, relax now.” He INJECTS the chemical that says “Hey dick, get hard”. The good and bad news of his is that is works for a couple hours at a time and he needs about 30 minutes to set up/get up… whatever. The drug is injected directly into the shaft of the penis, which made me cringe untill he explained that there are essentially no nerve endings where they teach you to give a tiny injection using an insulin surringe. Ask your doc if you are still having an issue, or I can track down the name of the drug and you can just tell your doc.


  23. avatar

    Dan says:

    September 15th, 2011 at 12:39 am

    Hi Mike,

    I am on week 3 after having my whole colon removed after a flash UC attack (I didn’t know I even had it til seven weeks ago!)  Your photo documentation seriously made me cry after seeing the same stuff from my point of view the last seven weeks.  You have such a positive depiction of the whole thing that it makes me feel better and I feel I should be sharing my story too like this.  Hope everything works out awesome.  Stay strong everyone who is going through this, keep that head up and stay distracted when you get down, you can do it!



    Jeffrey Naughton Reply:

    Hi Mike, Welcome to the club. It all gets much much bettter. At 3 weeks post surgery you are really on the easy side of things now. Just hang in there for a few more and do not overdo it by lifting too much and you will be better than new.



    Jeffrey Naughton Reply:

    Oops that was supposed to read, Hi Dan not Hi Mike


  24. avatar

    Denny Norton says:

    September 15th, 2011 at 10:06 pm

    Hi Jefferey and all. Here is my recap of the events that I had recently  June 15th, 2011 done to correct my severe anal pain. I did go thru with the cholostemy surgery after all. A stoma was placed on the left side lower abdomin area going to the large intestinal tracks. At first sight I was feraful to touch the stoma as it was beet red and looked very touchy feely. As I grew to accept it I one day set a hot bubble bath and soaked int he tub water with all the wonderfuls bubbles and just let my hand glide and slide over the stoma. You are so right it had no feeling what so ever. It was like a dead part of me. No feeling. It first glance it appeared to be 3 inches round and two inches above my abdomin area. I freaked ya know. Now mt stoma has shrunk to one inch by one inch in size and Dr said it will continue to shrink even further so I am hopeful to go to a smaller same color skin patch like what smokers use the nicotine patch size thing when it stops shrinking. Severed the colon about 12 inches above inside the rectum area. Therefore closing that part completely off. I was asked before surgery if I wanted to have it sealed off inside or have my anus sewed and closed off. I am also gay and I felt if I closed it then I would be damaging my/our sex life. Which was very “empty” at that time. Well hell it still is because I am embarrassed to still have the bag. I now have severe erectile dysfunction. Am waiting for the stoma to shrink enough so that I can wear them circle /square patches over it instead of carry the bag thing. It just feels sorta freakish.  Living now totally pain free now is so friggin awesome and I am so excite to not hurt anymore, anywhere. Best of all I am off them damn pains meds, (morphine). I had a dependency to abuse them. Every time I even thought I fell a pain I’d head for the bottle of morphine so my partner took them away from me and gave them to me on a schedule basis so not to abuse this.. Which is exactly where I was heading to. At that time I had this Nogiveashit attitude. Really.  I come from a family of alcohol and drug abuser’s so it was best I refrain from following their same dependency path. My life partner knowing this took full control and got me off that road. Talk about a U turn on a hwy full of congested traffic. Whoa. I must say I have zero regrets making this decision to go cholostemy bag. I am looking forward to getting the patch soon-er I hope if I can heal quicker. Jeffery, you having been thru this before us all here now have been so helpful and resourceful in helping us become aware of the procedure and life changes we all encounter. Many moves and kiss as well as big hugs off to you my friend.   Denny in Fort -worthless, Texas.


  25. avatar

    albert says:

    November 26th, 2011 at 9:12 pm

    Gay male here! just diagnosed with Crohn’s. Thanks for so much helpful information. I wish there was a site for the gays to share more personal information because reading in between the lines and embarrassed to ask questions that are very important to us…



    Drew Wright Reply:

    Trying to get a website together for us Gay guys who are experiencing the same life experience … Please contact me with you stories and advice! I would really like to chat with others who have had JPouch surgery and support us all by sharing advice on all things Health, relationships, sex – the do and dont’s, how life has changed your outlook! I want to create a positive place where i do not feel alone and in turn give that knowledge to anyone else that finds my/our site. Drew (

    Albert please contact me if you need to talk or just share your experience…I would like to share with others, as like you say we have a lot to deal with a Gay guys! Drew


  26. avatar

    Drew Wright says:

    December 17th, 2011 at 1:43 pm

    Trying to get a website together for us Gay guys who are experiencing the same life experience … Please contact me with you stories and advice! I would really like to chat with others who have had JPouch surgery and support us all by sharing advice on all things Health, relationships, sex – the do and dont’s, how life has changed your outlook! I want to create a positive place where i do not feel alone and in turn give that knowledge to anyone else that finds my/our site. Drew (


  27. avatar

    alice abbott says:

    May 26th, 2012 at 8:10 am

    You are an inspiration. You kept it positive and remained thankful. You are bad to the bone.


  28. avatar

    Hershel Peffers says:

    June 7th, 2012 at 11:37 am

    It’s very important that people pick a detox program that is right for them. If you pick one that’s not suited to your personality then you’re more likely to give up or not enjoy it.


  29. avatar

    Peg says:

    July 7th, 2012 at 11:20 am

    Tnx for sharing your story to others, it wasn’t easy to read for me language issues 😉 But the most i did understand.
    I am a young lesbian woman with an ileostomy for me and my girlfriend it is not a problem. It solved a lot of my problems.


  30. avatar

    david says:

    November 7th, 2012 at 2:19 pm

    that’s a touching story ,my son who,s 8 mouths was born with its , i was afraid but here ring Ur story i think am OK , he;ll be going back for surgery January, 8, 2013 am in west Africa ( Ghana)


  31. avatar

    Steve says:

    January 11th, 2013 at 9:37 pm

    Hey Boots! Not even sure if you check this website anymore now that you’re probably almost 5 yrs post jpouch but wanted to let you know that I really enjoyed your story. I’m having surgery #2 next monday, Jan. 14, 2013 and reading your story really brought back memories of my 1st surgery. Everything you mentioned specifically about being a gay male and having to go through this really connected w/ me. I also started a journal of sorts to document my journey through all of this and started a video diary that I put on You Tube under “ucandpsc”. I hope everything has gone well for you!


  32. avatar

    Carlos says:

    February 15th, 2013 at 7:07 am

    Hey Guys, 

    Thanks for the information.  I am getting ready to be with the guy I have been dating for the first time.  He is kind and understanding.  I have been worried as it will be my first time.  I have found the information here to be great.  I am also luck that we are both versatile so we will see what happens.  Thanks for the support and all the best to you men.  



  33. avatar

    Betty says:

    June 3rd, 2013 at 9:21 pm

    This is probably a stupid question, but I’m guessing that you can never use your rectum for sex with a J pouch. Is this correct? You can still have gay sex, right, except that you will be on top? No disrespect intended; I honestly just don’t know much about this and am wondering. Kudos to you for surviving and thriving!


  34. avatar

    Cal says:

    June 4th, 2013 at 3:06 am

    Hi Betty. Rule no 1 of having a j-pouch: there are no stupid quesitons! I’d point you in the direction of the j-pouch group forums, where there are a number of discussion threads about this:


  35. avatar

    Anja says:

    October 15th, 2013 at 11:32 am

    Hi i got my j puch when i was  15 years old. Its much better than the ileostomy but i often get cramps its 3 years later and have to go to the bathroom regulary. Goodluck xx


  36. avatar says:

    June 24th, 2014 at 8:43 pm

    s video to component cable radio shack


  37. avatar

    Bruno says:

    July 20th, 2014 at 8:33 pm

    I know its been a long time since you wrote this and experienced this but I wanted to tell you how inspiring your attitude it. You take it all with such stride. With such humor. A wonderful lesson for the rest of us. Do well, and be well, young person. See ya next time,



  38. avatar

    Kids Supra TK Society (18) says:

    September 19th, 2014 at 7:39 pm

    the current doom-la


  39. avatar

    Cathleen says:

    April 6th, 2015 at 5:46 pm

    El abrazo whole еs partre ɗe un sexco pasional ƴ creativo, dondе ell contacto orporal еѕ mսy completo.


  40. avatar

    Maybelle says:

    April 6th, 2015 at 11:40 pm



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