Sometimes we exhaust all efforts to overcome our Crohn’s disease or ulcerative colitis. As patients, we go to the ends of the earth looking to find something that might work. There are success stories out there of people who have changed their diet, found a medication, or tried an alternative therapy that worked.
This is not always the case, though. Many IBD patients eventually are faced with a tough decision. Do you have surgery? Or keep battling while having a low quality of life? Or try an ostomy?
When many patients hear the word ostomy, they flee. “Not me,” they say. I’ve heard many people say: “I can’t live like that and wouldn’t want to.” I’m going to be honest: in my mid-twenties I felt the same way. But I also hadn’t educated myself properly.
Once I took steps to educate myself on what an ostomy is, how the surgery was performed, and some success stories of living with an ostomy, I decided it was a viable option. It could give me my life back from Crohn’s disease. It could allow me to leave my house with fewer worries.
If you’re reading this, then you might be at a time in your life when you’re thinking about an ostomy. Let me give you some tips about what ostomy surgery is like, some steps to take before surgery, what to expect when you wake up, and how life might be different with an ostomy.
First, an ostomy is NOT a bad thing. My ostomy has given me my life back. It has allowed me to travel again, take part in activities with my friends, become an endurance athlete, and more. I think if you tell any IBD patient that they’d be able to do all these things, they’d say, “Sign me up.”
So what do you need to do before an ostomy surgery in order to prepare for what will surely be a new life? Research, network, and get ready!
Many IBD patients are scared of an ostomy bag. They have questions such as: what will daily life be life? Will my friends see it? Is it going to smell? And many more. The only way to put your mind at ease is to learn what an ostomy is, what other people’s lives are like with an ostomy, and more. Visit websites like UOAA.org (The United Ostomy Associations of America) or CCFA.org (The Crohn’s and Colitis Foundation of America) for more information.
Talking to doctors about the surgery and new lifestyle is great, but sometimes there are even better people and resources to discuss these topics with. Reach out to a WOCN nurse and ask them all the questions you have. These nurses are incredible and do amazing work all over the country. They work with ostomy patients every day and see what it’s like to live with an ostomy on a regular basis. Also, reach out to friends via social media or your personal network to find someone who might know of someone with an ostomy. Chances are, you’re more connected to someone with an ostomy than you think. You just have to ask around.
Ostomy surgery for men is a little different than for women and this is where a male might want to take extra precautions. Talk to your doctor about having someone from urology on hand during the surgery to place stents and protect any vital nerves that the surgery will come near. This is a fairly normal practice for ostomy surgery with men. Also, if you’re young you might want to visit a fertility clinic and have them freeze some of your sperm.
So you’ve talked to your doctor and you’re ready for the surgery. Now you need to know more about the surgery. If a patient elects or is in need of a permanent stoma, in many instances the surgery is done in two stages that are about six months or more apart.
The first surgery is to remove any diseased intestine, create the stoma, and allow the patient to adjust to a new way of life. Normally this isn’t a tremendously difficult surgery to recover from, but there can be complications, including irritated skin around the stoma or prolapsing of the stoma. Most of the time this doesn’t happen, but there is still is an adjustment to a new lifestyle.
The second surgery is to remove the patient's rectum, if necessary, and make the ostomy permanent. This surgery can be difficult to recover from due to the difficulty of giving this area the needed downtime to heal. Even if a patient is on his side most of the day, the movement of this area can make it difficult to heal quickly.
Now, you are probably wondering why going to a fertility clinic was mentioned above. If you haven’t had kids yet and would like to or think you might want to one day in the future, this is a good precaution and a proactive step to take. The reason is that both of these surgeries can come close to the prostate and affect the nerves which are necessary for normal sexual function. Many times, this is treatable with medication, but there are varying severities and it’s always better to be safe than sorry.
You’ve had the surgery, now what?
Remember the WOCN nurse that we spoke about earlier? That person should be a big part of your recovery, making sure you have the right ostomy appliance for your lifestyle. There are many companies out there that make a wide variety of ostomy products. Some good advice is to call them all up before the surgery and ask for samples. They will send you a few to try at no charge. Having these is key and will allow you to figure out which one is best for you right from the start.
Lastly, be patient! If you’ve made it past the learning process, have made the decision to get an ostomy, and are either now recovering or just getting ready, know that patience will get you through. No, you won’t be running around with the guys four months after surgery. But if you slowly build up your core muscles, figure out the appliance and system that work for you, and take it slow adjusting to your new life, things will likely get much better and your quality of life will go up.
Brian Greenberg is founder of the Intense Intestines Foundation. He primarily works as an advocate to help patients with Crohn’s disease, ulcerative colitis and ostomies. You can reach Brian on Twitter at @BrianIIF or email at Brian@IntenseIntestines.org. If you would like to connect with the IIF more please visit www.Facebook.com/IntenseIntestines, or www.Twitter.com/NtenseNtestines. And you can join Brian in the conversation about all things IBD on the IBDHealthCentral Facebook page.