If you’ve reached the time in your disease where an ostomy becomes necessary, then this blog is for you. Before my surgery, I did a lot of research and questioned many fellow ostomites about their experiences so that I would be prepared. This made the difference. In an effort to help those who are about to embark on this road, I’m going to tell you about everything I learned, before and after. Please note that, because I have an ileostomy, most of the information here will pertain to that kind of ostomy only.
Types of Ostomies:
There are many kinds of ostomies. Your surgeon will explain which kind you will be getting and how many surgeries are involved. Some ostomies are permanent, others are temporary and require 2 or 3 surgeries to reverse. Here’s a list of different kinds of options that you might fit into.
- Ileostomy: this ostomy is created from the end of your small-intestine. This kind of ostomy is most commonly created after a colectomy (the removal of your large-intestine, or colon). It usually has a liquid and acidic output.
- End-ileostomy: If you are receiving a permanent ileostomy, then this is the kind you’ll be getting. It is an ostomy whose stoma is created from the distal part of your small intestine.
- Loop-ileostomy: A loop ileostomy is the kind of ostomy you will receive if you are having a j-pouch created. If your surgery requires 2 steps then this is the kind of ostomy you will have after your 1st surgery. If you are having a 3-step procedure then this is the kind of ostomy you will have after your 2nd surgery. This ostomy has a stoma that uses a more central part of your small intestine. The image below shows the differences between both stomas.
- Colostomy: this ostomy is created from one of a few possible areas of your large-intestine. This kind of ostomy is created when a section of your colon is removed, leaving part of your colon intact. With a colostomy you can expect more formed output that is less acidic as some of the bile gets a chance to be processed through the part of the colon that still exists. The location of your stoma is determined by the area of your colon that was removed. Which ever part of your color remains dictates the location of your ostomy. The picture below shows the different kinds of colostomies you could receive
What to Expect After Surgery:
Everyone is different. This was the hardest thing for me to learn. My experience was unlike anyone else’s and your experience will also differ, at least slightly, from those you know. But, a few things are common and it’s good to know them before hand so that you can be prepared for them.
- Surgery will hurt. You will wake up and you will be in pain. This is COMPLETELY normal. You were just cut into and had an organ removed. Your pain level will be determined by your tolerance and what kind of pain regimen you are on.
- Most commonly, you will be but on a PCA (patient controlled analgesic) pump. This will allow you to administer a small amount of opiate medication into your bloodstream by the press of a small button. This machine is designed to only allow a certain amount of doses an hour. While the dose is not as large as if a nurse were to give an IV push of pain medication, it does allow for more frequent doses so that you can better control your pain. It’s a great thing really. You will be kept on this until you are able to take things orally. At that point you will be switched to oral medication. Please be open and honest with your doctors. If your medication is not doing enough for you pain, speak up! Pain management, post-surgery, is an important part of healing and your doctors will adjust your dose until it is helpful.
- If you are a chronic pain patient, as I was, you will likely receive different treatment than this. You should discuss pain management with your surgeon and anesthesiologist before surgery. The regimen I was on kept me primarily pain free, as long as I didn’t move, for 2 days. Once they started tapering me from my medication I started feeling more pain but I was able to avoid the immediate pain most feel immediately upon waking.
- You will not be permitted to take anything orally, even water, until you ostomy starts to have some kind of output. This takes a few days. Once your bowels start working again, you stoma will alert you with sounds and output. At this point, you can expect to be switched to oral medication. Your diet, at first, will be liquid and you will work your way up to solid food. Respect this process. Rushing it can make your recovery harder than it needs to be.
- Walk as much as possible. If permitted, walk on the first day after surgery. Either way, as soon as you are medically allowed to, which is usually immediate (there are some exceptions, I was one of them as I spent the first 2 days in ICU) walk. WALK, WALK, WALK. This will help you get better quicker as it helps your bowels start working and it helps extra gas and air to escape your body.
- Expect to have some discharge from you rectal area. If your surgery didn’t include the removal of your rectum, then your rectum will continue to create mucus (totally normal). You will feel the urge to expel this and absolutely should. At first, you rectal discharge might be bloody and frequent. Usually, after a month it will slow down significantly and no longer have any traces of blood. Be sure to ask your surgeon how much blood is too much.
- Your stoma will change shapes and sizes over the next 90 days or so. For some, this stops sooner than for others.
- It will take some time to find the right ostomy equipment and routine. A stoma nurse will teach you what you need to know. Curious about equipment? There’s a section covering that just a bit lower. Just scroll down.
- Swelling in your belly. This will subside with time.
- Recovery is 6-8 weeks. Most people can return to work at week 2 but you should stay away from any heavy lifting or over exertion for at least 2 months. Be sure to ask your surgeon exactly what your limits are and make sure you write them down for future reference!
What to Expect from Your Stoma:
- Gas noises. Don’t be alarmed. It happens. If you want to avoid it, avoid dairy, alcohol and carbonated beverages.
- A mucusol layer around the stoma. This is normal. The walls of your intestines are lined with mucus for their protection. So, if you see a shiny layer around your stoma, it’s normal.
- Movement. Yes, it will occasionally move around. Not by much, but you might notice subtle shifts in position, perkiness and how far out it extends.
- Light bleeding. Your stoma is lined with small blood vessels but has a total lacking of nerve-endings. So, when you clean your stoma, you can’t feel a thing. It’s easy to break a vessel and have some light bleeding. No big deal. Just hold a moist paper towel (or whatever you’re using for cleaning) over it until it stops. Any bleeding that is more than light spotting and won’t stop should be immediately reported.
How To Eat Healthy with an Ostomy:
This is a relatively straight forward topic. It is in your best interest to play it safe in this area.
- DRINK LOTS OF WATER. You are now much more prone to dehydration, especially with an ileostomy. Make sure that you’re drinking at least 3 liters of water, daily! Dehydration can cause many problems that are better avoided, especially since it’s so easy to avoid.
- For some, staying hydrated is hard to remember. A few tips: get a hydration reminder app on your phone; buy a special water bottle and keep it filled and in sight at all times; ask your family to kindly remind you if they haven’t seen you drink in some time.
- Stay away from high-fiber foods. You might be tempted to eat what you like now that you’re feeling as good as your are (yes, most likely, a week after surgery you’ll be feeling like a million bucks, even with all that post surgery pain). High fiber foods can wreak havoc on your recovering bowels. The easier your intake is to digest, the less work your bowels have to do and the quicker and more efficiently they can recover. Also, roughage can cause blockages and you DEFINITELY want to avoid that.
Everyone has a different routine when it comes to taking care of their ostomy. Everyone uses different products as well. It might take some time to find exactly what works for you. Fortunately, many companies offer free samples so that you can test out products without it taking a toll on your bank account.
- Coloplast has a wonderful sample program. Just for signing up for samples, they send you a wonderful kit filled with great ostomy tools that you would never have thought of getting on your own. Go to their website and request some free samples before your surgery: http://www.coloplast.us
- Hollister also offers free samples that you can acquire here: http://www.hollister.com/us/products/sample.asp?id=1
- My preferred method for ordering supplies is EdgePark. You can quickly create an account, add your insurance info and they automatically bill your insurance. It’s like an online mall for ostomies.
Ostomy Supplies I Personally Can’t Live Without:
I can’t live without these things. They make my life with a stoma so much better and maybe you’ll love them too.
- Barrier Rings: I prefer Hollister Adapt Slim Barrier Rings
- Deodorant/Lubricant: I prefer ColoPlast Brava Lubricating Deodorant
- 2 Piece Pouch System: I prefer Hollister products when it comes to by wafer and my pouch. But most companies carry 2 piece systems. I prefer the 2 piece because it allows for frequent pouch changes without the need to change your wafer.
- Nystatin Powder: Yeast infection are normal on the skin surrounding your stoma. Best way to beat them is the use of nystatin powder at the first sign. This needs to be prescribed by your surgeon.
- Barrier Wipes: I prefer 3M Cavilon No sting Barrier Film
- Adhesive Wipes
- Curved Scissors: They make it so much easier to shape the opening of your wafer to almost perfectly match your stoma shape.
I hope this was helpful. If there’s anything you think I should add, or any tips that work really well for you, or any questions you have, please feel free to post in the comments. Thank you so much for your time and I wish you all of the best in your life with your ostomy!