I had a ton of questions when I was in the process of having the surgery for my j-pouch. I have recounted some of my top questions so that I can hopefully help those of you out there considering surgery or in the process of surgery. Please remember, everyone’s body is different. This has simply been my experience.
Top 10 Questions & Answers about J-pouch surgery…
1. Will I be able to have a normal social life with an ileostomy?
YES. There are ways to hide the bag. I (being a girl) had basically a tight slip that I would wear under all my skirts & dresses (that made up most of my wardrobe while I had the ileostomy because it hid the bag best). People who didn’t know would never be able to tell that I had a bag under my clothes. You can resume pretty much all your normal activities. I emptied my bag every few hours, but it never really stopped me from doing anything I wanted to do.
2. Will I be able to hold my poop once I have a J-pouch?
YES. In my experience, I can hold my poop for hours. I rarely get an urge at all, much less the urges I got when I had Ulcerative Colitis. I have NEVER ran to the bathroom since having my j-pouch. I rarely need to locate the bathroom when I am out like I always had to do. I know it’s time to go to the bathroom when my stomach gets rumbly and a bit uncomfortable. Rarely I’ll get a bit of pressure when it’s time to go or I if have gas.
3. What will my diet be like with my J-pouch?
Everyone’s body is different. I was told I’d never be able to have certain fruits and vegetables by an ostomy nurse while my surgeon said that I should be able to eat whatever I want eventually. Being 5 months post surgery I really can eat whatever I want. When I eat things like salad and tomatoes it doesn’t digest completely, but I think that is sometimes true for a normal person. I can drink alcohol (although sometimes it upsets my stomach a bit). I’ll eat pretty much everything except corn.
4. Will I have diarrhea for the rest of my life?
This thought was a little upsetting to me. Doctors told me that I’d never have normal formed stool again. I would say in general, depending on what I eat I have formed/semi-formed stool about 60% of the time and diarrhea 40% of the time. This can change if I tweak my diet. Diarrhea however for me isn’t the same as a normal person. I can hold it pretty comfortably for hours, usually there is no urgency.
5. Will I have to take imodium for the rest of my life?
I was really upset about the thought of taking several imodiums daily. Part of the perks of having no Ulcerative Colitis is for once in my life I wouldn’t have to be on daily pills. I think in the past 5 months I’ve taken 1 imodium. Generally, I can bulk up my stool with what I eat and when I do have diarrhea I really don’t mind it.
6. Does it matter what surgeon performs my surgery?
I’m no expert in this, but going through the process myself I have to say YES. You have to do your research. You want someone who has done a lot of J-pouch surgeries SUCCESSFULLY and continues to do them on a regular basis. This is going to affect you for the rest of your life, so you need someone very skilled in this particular area. It is a very delicate surgery and you want to make sure you have the very best.
7. How many times a day will I go to the bathroom?
Everyone is different. Generally I go to the bathroom 1-2 times in the morning before work, 1-2 times between 5 & 9 p.m., 1 time before bed, 1-2 times overnight. So a normal 24 hours I go about 5-6 times give or take. I know it seems like a lot, but it’s not like a normal person who sits in there for 10 minutes when they use the toilet. It’s pretty quick. The best part is there is no pain or urgency.
8. Will I constantly be getting dehydrated?
It felt overwhelming to me the amount of water I needed to drink when I first had my ileostomy. Things slow down after a while especially after the J-pouch is in use. I do my best to constantly have a bottle of water with me and yes, I get thirsty more than the normal person because I lose a lot more water then a normal person. I’d say I only drink as much water as a normal person is “supposed to” drink. Since my reversal I have not been hospitalized due to dehydration.
9. What will my “new” normal be like?
Everyone is different. At the end of the day, the disease is gone once the colon is removed (for those of you with Ulcerative Colitis). The quality of life is SO MUCH BETTER on the other side. I can’t stress that enough (again, this is my personal experience). In general, my appetite is better then ever before, I’m gaining healthy weight, & I’m more active then I’ve been in a very long time.
10. Will I get pouchitis?
I have read and heard many horror stories about pouchitis (inflammation of the J-pouch). I have not experienced this. I try to take a very strong pro-biotic daily and that is supposed to help keep your intestines healthy.
If you are in the middle of these surgeries, or are considering having surgery and have questions, please feel free to email me. I would love to help in any way I can! firstname.lastname@example.org.