I have been chatting to Brian on Instagram for a while now and have always been interested in what it has been like for him as a man that was wanting a family, plus he is in the states I wondered if it was overly different there than here with care and the like. After I posted about fertility as a woman with a stoma I reached out to Brian and as I am lucky enough to call this man a friend. We have talked a lot about being parents and I have been privvy to information that was just limited to private message about our families. So please read on and find out about what it is like from a male ostomate wanting a family and needing a stoma’s perspective.
So it all started August of 2014. It was a Sunday, I woke up and felt I had to go to the bathroom. I saw some blood, but wrote it off as haemorrhoids. It continued more over the next week so I called my GP. He wanted to see me that day and then set up an colonoscopy. The GI doctor told me I had Ulcerative Colitis. I never heard of the disease before. I wasn’t sure what to say, or what was in store for me.
They started me on Canasa for a few weeks but my condition progressed. At this point my GP decided it was time to see a GI with more knowledge of the disease. The initial visit went well and we started a steroid regiment of Prednisone. That didn’t help and I was told again that the disease progressed. Next was on to Uceris as you can guess, that didn’t help either. This time was different, as it caused a steroid induced Pancreatitis and led to my first hospital stay.
Upon release, my GI wanted me to meet the Colorectal surgeon, which scared the living hell out of me but my wife and I pressed on and attended the appointment. He started talking about a lot of things we’ve never heard of before. Being completely honest, most of what was being said was foggy. Then he said if we can’t do a keyhole surgery that there is a possibility of some complications, specifically, with how you ejaculate. He explained it could actually go back in instead of out, in terms we could understand. I could see the horror on my wife’s face- we just got back from our honeymoon 4 months ago and wanted to have children. So I asked if that happens can we still conceive? Thankfully, he said yes and that they will just go in and retrieve the semen if it come to that. I left that appointment like all of us do. Asking, “Why is this happening to me? What if I can’t have kids? Is my wife going to leave me?” Everything and anything was running through my head.
The next few months consisted of more steroids, another bout of pancreatitis. Remicade, Humira and Entivio- all failed. We were out of options and I was down 73 lbs and very sickly. It was now January and I had an appointment for blood work. Shortly after we arrived home, they called and told me to get to the hospital immediately. My surgical team was there and we spoke about options, which resulted in there being none!
It was time to get this colon out. First surgery was keyhole, so when I woke up I was relieved thinking “Yes!” everything will still be in working condition. I started to feel very ill shortly after surgery. I don’t know the medical term, but the portion of my small intestine my stoma was created from had hardened and adhered to my abdominal wall I was told. The surgeon’s best description was that it’s like 4 inches on concrete and nothing can get through. A second surgery was scheduled and they would have to go in. At this point I’m thinking shit am I gonna make it out of this hospital? 33 days later, I finally walked out of the hospital. Recovery was hell but my wife and family were so supportive.
Fast forward 2 years and 2 months later our daughter Dylan Grace is born! Thank god! Now we face the next hurdle- my diseased rectum needs to go. At another consult with my surgeon, we start talking about the surgery and go through all the risks. “With this surgery there is a slight possibility we can nick you” were his exact words. “If that happens, you may not be able to achieve an erection.” The Chance is low (about 7-11%) but it’s there. I deal with blood and mucus 2-3 times daily feeling like I’m pushing a beach ball out of my ass. We both want more children so I’ve made the decision to suffer with this f****** rectum as long as I can physically handle.
Normally I wouldn’t write something like this but a friend asked me to give a male view and I hope it helps just one person. The mental battle is as tough as the physical but every moment with my little girl makes me appreciate life! Without my bag I would have been in a bag! Lift each other up everyday!! You find out you need your IBD community as much as you need your own family daily. Thanks for reading!
Thank you Brian for your honest post hopefully this will be able to offer some other gentlemen in your position some solace and insider information as we all know guys can be guarded with their feelings. I had to add the photo of Brian and his family it is just too cute!