This week I want to talk about what life is like with a j-pouch. I have enlisted the help of other people living with a j-pouch to tell me of their experiences. I had 72 who participated in my j-pouch survey. Instead of boring all of you with a detailed report, I’m just going to post a link to the results. In this post, I want to focus on my own personal experience. So without further ado, here are the results.
Please remember that I am NOT a doctor. Please read my disclaimer. If you are having problems and you think you might have an emergency situation, CALL YOUR DOCTOR IMMEDIATELY.
J-Pouch & Intimacy
I had several questions about intimacy after surgery when you have a j-pouch. This topic has been covered by many, many other people. I can report that I do not have problems, but as I am not comfortable giving advice on the topic, here is a list of a few of those resources. NOTE: This material is NOT recommended for children under the age of 18.
Jpouch.net – Eric’s article on intimacy.
Sara Ringer’s YouTube playlist on intimacy with a j-pouch or ostomy.
Jpouch.net – Megan’s article on intimacy.
The Good
Before I get into the nitty gritty of it all, first, I want to tell you that life with a j-pouch has been great overall. I had my surgery done in two parts. I had a temporary ostomy for 3 months exactly. I was afraid that after I had my takedown, I’d be going just as much as when I had a diseased colon (15-20+ times a day). I can now safely tell you that if I stay on top of my Imodium doses, I will have to go 1-3 times a day. Not too shabby. I feel more confident in going out and traveling. There’s no longer a constant burning sensation in my abdomen. No worry about finding a bathroom. I can actually hold it for a fair amount of time before it becomes uncomfortable. Given the choice, I’d do it all over again.
I have been able to add foods back that I never thought I’d eat again: salad, coffee, nuts, cooked broccoli, etc. Coffee was a big deal for me. I can also drink alcohol, but I’ve never tested the quantity. Being a lightweight anyway, I really am not a fan of alcohol in large doses. I’m still afraid of shrimp as that was always torture to eat with a colon… but maybe one day. I do know some j-pouchers who eat shrimp. TIP # 1: Always make sure you chew your food REALLY well. I feel like I have my life back. I feel free.
The Bad
Life with a j-pouch is not ideal. I actually would really like to have a healthy, fully functioning colon… but until there’s a cure and they can regrow colons, this is my lot in life. The gas pain, especially in the beginning is really awful. To be honest, it’s more uncomfortable than painful, but it’s still extremely unpleasant. Sometimes Gas-X helps, but not always. Gas gets easier with time, however, so that shouldn’t be a deal breaker.
Nutritional deficiency is another issue for those who do not have colons. Currently, I take chewable B12, gummy mutli vitamins, liquid vitamin D, chewable iron and chewable Calcium supplements.
Tip # 2: Take your supplements daily.
Sodium is also an issue. You need to salt your food way more than you’re used to. Tip # 3: In the words of my ostomy nurse – Salt your food until it tastes like the Gulf of Mexico.
Butt burn sucks. It just does. It usually doesn’t bother me unless I have multiple trips to the bathroom per day. Remember the colon helps absorb some of the liquids and that makes it easer on the skin. Which is one of the many reasons I would prefer to have a healthy colon… but I digress. There are a lot of things you can do to help with butt burn.
Tip # 4: Invest in a bidet – see link below.
Tip # 5: Invest in wet wipes.
Tip # 6: If you don’t already, invest in good, quality TP… my favorite is Charmin Sensitive!!!
Tip # 7: Calmoseptine will save your life (or your butt… same difference, right?).
Tip # 8: Pat, don’t wipe.
Tip # 9: Stay on top of your Imodium doses – trust me!
How much Imodium? Well, that will be a trial and error deal. Talk with your doctor to find your proper dosing. Right now my pouch is in transition so finding the right dose is in the trial and error phase – again. If you take too much, your poo will be too solid. If you don’t take enough, the floodgates of hell will open up and you will regret it.
The Ugly
And now we get to the ugly parts… First, I will address the visual ugly: the scars. Don’t get me wrong! I think scars are awesome. It reminds us of what we’ve been through and how far we’ve come. However, I know that society teaches us that we should cover up those scars and be ashamed. I wrote a post on this issue a while back. Tip # 10: Use Mederma!
Another “ugly” part: The gurgling noise! For several months after my surgery while my body was still adjusting, it would make the most ungodly growling, gurgling noises. At Thanksgiving last year, it was so loud that my husband’s cousin took him aside and said, “Man, Amber’s stomach is LOUD.” I was so embarrassed. That eases with time.
Something that I still struggle with is the noise in the bathroom. I cannot tell you how frustrating it is when you’re in a public place to try to wait for others to leave so you can finish your business with no one there to laugh on the other side of the stall. I’m telling you, you haven’t heard anything until you’ve heard your j-pouch singing the song of it’s people. You will never truly use the bathroom in peace again. I wish there was something that could muffle it… but not even the courtesy flush will save you.
The smell is another issue. I know that I talk about Poo~Pourri a lot. But I can’t help it. That stuff is truly amazing. Tip # 11: Invest in a bottle or two of Poo~Pourri. My favorite is Lavender Vanilla.
Nighttime accidents happen. I had several nighttime accidents. It hasn’t happened since about August, but I wore Adult Diapers every night for several months until this was no longer an issue. My tips for accidents? Tip #12: Wear adult diapers when you sleep. Tip #13: Take a dose of Imodium before bed.
Something else you absolutely need to know: DO NOT, and I repeat DO NOT test your gas passing skills. You will make a mess. You will regret it. And you will hang your head in shame as you clean yourself up afterwards. Tip #14: If you pass gas, make sure you’re sitting on a toilet first. Seriously.
Questions Answered
I gave you the opportunity to ask questions. So I’m going to take this opportunity to answer them.
This one comes from Eric of Vegan Ostomy.
“Do you feel like you need to go like before or is it different when you’ve got a j-pouch?”
It’s definitely different. You will in a way have to re-learn how to go… sort of. It’s an experience that is hard to describe. You know when you have to go, but it isn’t an emergency situation, especially the longer you’ve had the j-pouch. It stretches and is able to hold more volume. After my takedown, I have never been worried about making it to the bathroom in time.
Also from Eric, “If you have the feeling, how long before you actually have to go? Can you ‘hold it in?'”
How long? Well, again, that depends. The more your pouch matures, the longer you can hold it. I have held mine for several hours (usually if I’m in a car). That being said, I would not hold it for too long. Doing so aggravates hemorrhoids and may cause irritation and bleeding.
Hannah asks, “Is your life better now? I know for a lot of different surgeries you feel better after the first year and that is the point you would recommend it or not.”
It was definitely not something that I jumped into. And while it’s had it’s downs, it’s also had it’s ups. I would do it all over again. I realize that everyone’s experience is different, but for me, I love my j-pouch. Something that helped me get to that point was this video from Sara Ringer! I love this girl.
A girl on Instagram known as veronicadawng asks, “…how did you and your GI decide it was time for the jpouch?”
Honestly, I fought it for the longest time. My second GI brought it up first. I refused and kept trying different medications. My 4th GI put me on several biologics trying to put me in remission. I fought this as well. Finally, after a year an a half of flaring, I had enough. I was tired of trying this or that. I just wanted relief. My body had become steroid dependent and every time we dropped my dose to 10mg, I would go into another raging flare. I knew then and there that it was time. I was in pain, bloated from the steroids and was exhausted all the time. After surgery, my surgeon told my husband, “That [colon] needed to come out.”
Another Instagram question from marythegeordie, “When can I start doing exercise on my tummy?”
This depends on how you feel and what your doctor tells you. Some of my friends who’ve had it done started exercising a week later. Those individuals had the surgery done laparoscopically or “key hole.” I had full open surgery. And I started exercising 9 months after my takedown. I probably could have done it sooner, but I was afraid. My muscles had gotten very tight and weak. It’s been difficult, but worth it.
dii_moses from Instagram asks, “…food… Is it like before, or do you have more varieties now?”
I definitely have more variety. Nothing like before.
ibdbutterfly13 asked about scarring. Please see my post on scars.
Sarah from Twitter asks, “How often do you have issues with it?”
I suppose it depends on your definition of issues. I’ve never had to go to the ER for it and I have never had pouchitis. Bottom irritation can happen frequently, but it’s really just a nuisance.
Barbie Health asks, “Does it feel funny? Less pain?”
It feels like nothing I’ve ever felt before, so yes. It feels funny, but there’s definitely less pain.
I hope all this helps you in your j-pouch journey. If you have any more questions or would like to ask me to clarify any of this, please find me on Instagram (@ColitisNinja), Facebook, or email me.
