Posted by Hannah Malerman on June 03, 2021
Hello everyone, it’s Hannah! In early December of 2020, I had my ostomy reversal or takedown surgery to create my J-Pouch. I knew from talking with my doctor some of what to expect: waking up with lots of tubes, feeling tired and sore. But it was through reading articles about other people’s J-pouch experiences (those who just had surgery and those who have lived with their pouch for some time) that I was able to prepare myself for what to anticipate physically after surgery. Looking back now, I realize I’ve learned a lot, that there are things I wish I had known, and that I want to share what I’ve learned so others can know what to expect.
Personally, I didn't feel too nervous going into my operation, but I felt really nervous about not knowing what to expect afterwards. Now that I've had surgery and have lived with a new J-pouch for a couple months, I realize that I wish I had known more about things like how I might react to certain foods, about pouchitis, the relationship between food restriction and blockages, what it was going to feel like waking up from surgery, and so on. I put together a list of tips and things to know based on my experience:
Before Surgery
- A couple of months before, start to use your butt muscles more often. This way, when you start learning how to use your J-pouch, you will be able to hold it better
After Surgery
- Post-surgery you will still need to intermittently check in with your GI doc
- You might wake up with a lot of tubes, but honestly, I was so tired that I didn’t notice until the next day
- The more rest I got, the better I felt
- I started walking the day after surgery, and the more I walked the better I felt (I pushed myself a little, but listened when my body was done)
- I had to go to the bathroom a lot at first
- When I had an urge to use the bathroom, I usually went. But if I was able to hold it, for even a short time, it helped build up more muscle
Discomfort After Surgery
- Remember everybody is different. Your experience will be different than others. If something doesn’t seem right, you should contact your care team and discuss it with them
- If your rectal area gets irritated, there are creams that help with irritation (I used an ointment called Calmoseptine)
- I used Tylenol as my over-the-counter pain reducer (this is something you should decide with your doctor)
- I felt better overall when I drank lots of water
- If you are someone who gets a period, just know it may be tougher and more painful right after surgery. That was my experience. But the next couple of times I got it, it felt fine
Food & Eating After Surgery
- Each person is different. You will learn as you go about how different foods affect you (keeping a food journal can help you notice what works and what doesn't when it comes to food)
- Depending on healing, I found I needed the bathroom more after eating certain foods
- I found that sugary foods went through me quicker
- Sometimes eating multiple smaller meals worked better than three big meals
- I used fiber supplements to help thicken the stool
- I avoided eating late in the day, so I didn’t need to go to the bathroom at night
- Note: It is possible to still get blockages when you have a J-pouch. To help prevent this, I made sure to chew my food thoroughly, and if I noticed that it felt like I was getting a blockage I would drink lots of water or Coke/Pepsi and restrict my eating until the blockage passed
Medications & Supplements
- I use anti-diarrhea medication before bed, which helped me not need to use the bathroom at night
- I also take a probiotic because I find it helps me when I have a stomachache or I just ate something that makes me need to go to the bathroom more
Pouchitis
- Pouchitis is common, so don’t freak out if you get it. Symptoms can feel kinda like colitis symptoms
- Sometimes your doctor may recommend a scope of the pouch to confirm this is pouchitis
- When I developed pouchitis, I felt nauseous, had no appetite, had a stomachache all the time, had no energy or motivation to get out of bed, and was extremely tired
- I have only had pouchitis once, but you can get it multiple times
- To treat my pouchitis, I took medication for three weeks, which my doctor prescribed to me (the length of time on the medication can vary)
- As I said before, I take a probiotic to help increase the good bacteria in my gut and help fight off infection
Using the Bathroom with a J-pouch
- I had urges, then tried to go to the bathroom and nothing would happen. We called my doctor, who recommended taking more anti-diarrhea pills. If you’re having a similar issue, talk to your doctor and come up with a plan together
- Just know, it will take time to have a “normal” bowel movement
School & Travel with a J-pouch
- If you attend in-person school, plan ahead for needing to use the bathroom multiple times a day. If you don't have them already, talk to your school about setting up accommodations (here are some IBD Accommodations resources that can help)
- Traveling with a J-pouch takes some extra planning. For example, if I were going on a two hour car ride, I would stop eating an hour before leaving and take some anti-diarrhea pills
Remember! Everyone is different. If you read this post and find yourself thinking "Wow! Anti-diarrhea pills are a great idea!" or "I'm going to start probiotics!" or "Uh oh! I think I might have pouchitis." the first thing you should do is call your doctor. That way you can make a plan together that works for you! I hope this helped you feel more comfortable and informed about what to expect after surgery and with a new J-pouch, and I'd be interested to hear about your experiences (so leave a comment below).
- Hannah
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