The Journey To A Completed J Pouch

My wife, son and I at a birthday party.
Can you tell I’m wearing an ostomy bag?

Meet Blake:

Hello again everyone. It’s Blake, 31 years old, I just wanted to complete my story started back in February 2011 of UC, colon removal, life with an ostomy bag, J Pouch creation and finally, pooping out of my butt again. I had a J Pouch that was done in 3 steps or 3 different surgeries in a 9 month period of time. J Pouch surgeries are normally done in 2 or 3 steps. I chose 3 steps simply because my surgeon told me there is less risk for a man to become impotent with the 3 step (for you young one’s out there that means you can’t get a boner anymore) and my wife and I decided to go for that one in case we want more children. I felt I needed to clarify what impotence means because I was talking to a younger guy one time about a J Pouch and he had no idea what I was talking about when I told him I was scared about the whole impotence possibility.

My Symptoms:

No UC in sight after a 3 step J Pouch surgery.

My Story:

I don’t want to really get in too much on why I made the decision to have the surgeries. I’ll just say my UC was really bad and removing my colon was my last resort. I don’t want to discredit any remedies you often read about on this website. I just didn’t have luck with anything I tried and I tried a bunch of stuff.

I got my colon removed on December 6th, 2011. I woke up from surgery in a very good mood actually. The meds they put you on are the finest quality. My mood would change shortly after seeing my stoma for the first time. Getting a peak at your intestine for the first time sticking out of your body is pretty impactful to say the least. That is supposed to be something that should stay inside your body, but you learn to adapt until it becomes normal, but it does take a while. After the first surgery I did have a great feeling of relief knowing that I would not need to sit on the crapper anymore. That was a good feeling and even though I was in a lot of pain at the time, I still remember that made me very happy. There was a lot of pain after this surgery. You’re stomach muscles are cut through, so getting out of bed, or off the couch are very hard tasks at first, but the body is amazing and recovers pretty quickly. They give you pain meds that help out with this so I was feeling much less pain after two weeks.

My 1st stoma (small intestine sticking out of abdomen). This picture was a few days after I had my colon removed, you can see the C-section type incision I got also.

Life with an ostomy bag takes some getting used to. How was I going to wear my clothes and hide this thing? How was I going to go to the bathroom in a public place? How was I going to change my bag without getting shit all over the place? How was I going to get it on with my wife? When I first returned to work, I used to think that the guy in the stall next to me could hear me emptying my bag, wiping it clean and clipping it back together. But I soon learned to not care. At least I wasn’t the one making the huge farts and splashes dropping a load in the toilet anymore. Wearing my clothes wasn’t even a problem. I got an ostomy belt that helped to conceal it, nobody even knew I had an ostomy bag except for the fact that I told everyone that I had an ostomy bag. I’m not good at keeping secrets. I felt better that people I worked with knew what was going on with me, just made things easier. Changing an ostomy bag wasn’t easy at first. An ostomy n urse walks you through the steps while you’re in the hospital, and they set me up with an at home nurse for the first few weeks after the surgery and she would make home visits to help me out. You’re supposed to change your bag every 3 to 5 days or when you feel it’s necessary. You never know when your stoma (intestine that sticks out your abdomen) was going to start spewing hot turd lava so this made it tricky. I did make quite a few messes, but I eventually got good at it and that wasn’t a problem either. I found out that if you eat a few marshmallows it slows things down and there were also certain times of the day where my stoma wasn’t very active. As far as the whole love making process, my equipment still worked and I was able to enjoy a few intimate moments with the wife so I was happy. I say a few because we have a 3 year old son and he still sleeps with us so he was more of an obstacle for us than my new ostomy bag. For any future parents, don’t ever let your child start sleeping in your bed, you will never be able to get them out of there!

I was able to keep a regular gym routine even with an ostomy bag. One of my hobbies since college has been weight lifting, nothing serious, just like to push myself. I got back to lifting pretty heavy weights in no time (against doctor’s orders). I started going to the gym 2 weeks after I had my colon removed even though I was told not to lift anything more than 10 pounds for 6 weeks. I was eating pretty much anything I wanted (anything gluten free because I have Celiacs = allergy to gluten). Things were actually good with the ostomy bag. I never once had a stomach ache, cramping, blockage, gas pains, blood or constipation. I could even go on a run with a full belly if I wanted to. I could lay on the couch and be extremely lazy for long periods of time without getting up to go to the bathroom, which I could never do with UC cause I would be running to the bathroom every 15 minutes. I could do long road trips without a care in the world. When I had UC, I remember thinking “this turd ain’t gonna wait another 42 miles for the next rest area.” There are a few advantages to wearing a porta potty on your belly. I didn’t have to take a bunch of drugs anymore for UC either. I did take Metamucil fiber to thicken my output up and would take Imodium every now and then to slow movements down. Sure, wearing an ostomy bag is not anybody’s number one wish in life, but it far outweighed the misery I was going through when I had UC.

There were things I didn’t like about wearing an ostomy bag also. You have to empty it quite frequently and it fills up pretty fast right after meals. When I was at home, I would just take a knee to the toilet and empty the bag then rinse it out with water cause I liked to keep a clean bag. When I was at work I would sit on the toilet because I didn’t want people wondering why there was a guy in the stall on his knees. I didn’t want people talking. I was also pretty timid about taking my shirt off in front of people which was new to me because I’d never been shy about that before. This meant I spent the whole summer with no pool time. When I would change in the locker room at the gym, I would do it quickly because I didn’t want anyone seeing my bag. I guess you could say I wasn’t as confident as I used to be. My skin would deteriorate from wearing the bag 24/7 and would itch a lot. I used to scratch the shit out of that area, sometimes till I bled. It was hard to treat, but there are things you can do that help and I eventually got to the point where that wasn’t an issue either. Many people do swim with ostomy bags, there are belts that conceal, I just never got around to that.

There was a surprise I didn’t expect after getting my colon removed. I still had to pass stuff out of my anus about once a day or once every other day. Turns out that is normal. I still had a rectum at this point, which was still diseased with UC. It would still produce puss and sometimes a little blood even. After I told my surgeon this, he assured me that this was normal and not to worry. But this wasn’t too bad and was easy to control. Nobody ever tells you about this so you may be quite astonished when this first happens, but it’s normal.

I had my second surgery on June 26th, 2012. During this surgery, they created my J Pouch and removed my rectum (or most of it). They went in through the same incision as the first surgery which is very close to a C-section incision. I got a new stoma with this surgery, a much crappier version of the intestine sticking out of my abdomen than I had with the first surgery. This stoma produced a lot more output because now food was traveling a much shorter distance because part of my small intestine was being used for the J Pouch and this portion of my small intestine was blocked off and did not have any waste go through it. This surgery was a pretty rough recovery, much like the first surgery. My incision became infected and they removed a few staples and I had to pack the incision with gauze twice a day for 3 weeks. I also became allergic to narcotics and broke out in hives when I took my pain meds. So I stopped taking pain meds and this made recovery a bit more horrendous. I was able to get around pretty good after a couple weeks, the pain went down and I started back with my gym routine (after all 3 surgeries, the 2 week marked the end of pain and the start of feeling better). I took 4 weeks off work for this surgery. I probably could’ve returned earlier, but I have plenty of sick days at work so I took them.

My 2nd stoma after my 2nd surgery – the black liquid in the bag is typical after surgery, it doesn’t always look like that.

I had a lot of problems with keeping the ostomy bag on this time around. My stoma was flush with my skin, so keeping a bag stuck to my skin was nearly impossible and I had a lot of leaks and a bag even came off one night when I was sleeping. I woke up with a puddle of shit on my belly and sheets. This was gruesome. I did find a bag that finally started working and sticking. It had a concave base that helped bring the stoma out, made things much better and I stopped having leakage problems.

My last day wearing an ostomy bag, getting ready for my last surgery in hospital MC Hammer pants. Can’t touch this!

My final surgery was August 21st, 2012. This was the day before my son’s 3rd birthday. I felt bad because I was in the hospital for his birthday, but he came to visit me and we got him a sweet police car power wheel for his birthday so he wasn’t too upset. The last step was to do what’s called a reversal. This was my last day with my poop bag. They hooked back up my internal plumbing. As far as the pain involved with this step, it was very little at first. I woke up from the surgery and I couldn’t even tell I had surgery. I took a couple days for the pain to actually kick in and when it did… I felt it. The first 2 days after surgery were great, not much pain for me and nothing in my system to poop out because they wouldn’t feed me. I did around 20 laps around the hospital floor about 3 hours after I woke up from surgery. The doctor told me not to for liability reasons, but I ignored him cause I felt so good. My first trip to the bathroom was the second day after surgery. It looked like soup broth, but that was okay because that’s what I had been eating. I would go anytime I felt anything back there because they tell you not to hold it. I could not sleep at all. The gas pains were tremendous. It actually hurt and was really uncomfortable. I sharted my pants a lot the first week after this last surgery. I ended up just stuffing toilet paper up my butt a few nights in a row because I was so tired of walking to the bathroom every 5 minutes. The second week was a little better, but still not good enough. I was wondering if I made a mistake and was actually missing my ostomy bag. I ruined a lot of good underwear.

The gas pains or tremors that I feel are getting less frequent and easier to deal with. If you’ve ever read anything about J Pouches you’ve probably seen people talk about the infamous butt burn. Well, it’s a very real thing and I’ve experienced this a lot lately. I want to thank the makers of Calmoseptine lotion cause it’s literally saved my ass! I apply a dab of this stuff to my brown star after each dump with a surgical glove and it relieves that painful, burning, itching sensation. From what I understand, this should also get better.

I’m writing this story almost 4 weeks from my last surgery. I have felt pretty darn good the last week or so. I even took my son to an air show yesterday. We were gone from the house for 8 hours, I went to the bathroom once this whole time. It is much easier to control my movements than when I had UC. My underwear is in better shape, my sleep still sucks, my appetite is back and my ass is raw. I still have a gaping hole where my stoma was, for some reason the surgeon decided to let it close on it’s own. It doesn’t bother me, it just looks like I’ve been shot with a shotgun slug. I’m sure it will close up soon. After 3 surgeries, my lower belly looks pretty beat up. I used to have a flat stomach, now my stomach hangs over my waist line and the right side of my stomach pokes out farther than my left side. It’s probably only noticeable to me though. They tell you not to measure you progress with a J Pouch in days or weeks, but in months. My outlook is getting more positive. I’m feeling that I did make the right decision. I’ve probably been averaging about 6-8 bathroom trips a day for the last few days which is way down from the first few weeks and I’m happy with that. Ideally, I’d like to get to about 3-5 a day, but that’s just going to have to take some time to get there. Overall, I have very good control. Sometimes I have to clamp the brown star really tight to keep anything from spurting out during a spasm, but it passes after a few seconds and I’m fine. I’m trying to hold it in more now so I can stretch the J Pouch out.

My stoma scar – doctor said it will close on it’s own, it’s still open 3-4 weeks after, but is closing slowly.

I wanted to also thank my wife for all she’s done for me the last year. I really did marry a wonderful woman. Without her, I know I wouldn’t be as successful with all that I went through. She’s been my nurse, my secretary, my maid, my cook and my hot wife all at the same time. She was always following up with the doctors, taking notes, reminding me about appointments, getting my meds, cooking, cleaning, making sure there is always plenty of toilet paper. Also, big thanks to my parents and sister for helping out with my son. They made the 3 and a half hour trip for all 3 surgeries and stayed home with my son so my wife could be with me and stayed even longer to take care of me as my wife went back to work. I’m a very lucky man to have such an awesome family!

My son riding my IV machine the day after my last surgery.

I’m confident things are going to continue to improve for me and very happy that I’m finally over with all of this. Time to start having fun again and not worry about a faulty colon! I’m going to enjoy my last 2 weeks off work, probably practice a few pull ups so I can beat Adam in the pull up challenge. Take care everybody!

Where I’d like to be in 1 year:

I would like to be taking 3-5 dumps per day, sleeping through the night and not having to apply cream to my butthole anymore.

Colitis Medications:

I take Metamucil to thicken my stools about twice a day and that’s about it.

written by Blake

submitted in the colitis venting area
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Blake

My name is Blake, I’m 32 years old. I have a 4 year old son and a beautiful wife. I used to suffer from UC until I had surgery. I’m celebrating 1 year and 1 day with a J Pouch today (8/23/13).