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Going through the surgeries for my Jpouch was a very hard time in my life. It was such a mix of emotions. From pre-op to six months post-op, there was always something going on. Both good and bad. I can’t lie. Going through the surgeries were hard, but I learned a lot and I like to think I got a lot out of it. While more patients are choosing this treatment option, there still isn’t a ton of information out there on what it’s really like to go through with it. From a first hand, patient perspective.
Before I had my surgeries I was scared. Terrified to be honest. I came to my surgery consultation with tons of questions written down and although my surgeon and I had been through each and every one of them, I still felt there was something missing. Everything I’d read online was either bad or incomplete, a topic I will save for another post. – I wanted to find something, someone, to shed light on what it’s really like. I realize some experiences are bad. I realize there are people who have surgery and don’t have a favorable outcome. Some people would consider my outcome non-favorable, but I certainly wouldn’t!
My surgery was never meant to be a “cure.” – Some people address it as such, but I do not. It addresses the Ulcerative Colitis. – The inflammation in my colon. It essentially removes a major component, but it still doesn’t address my immune system. I am still auto-immune which still leaves me vulnerable to extra-intestinal manifestations, along with the chance that my immune system would still attack my small bowel. I still have Inflammatory Bowel Disease (IBD).
J-Pouch Questions I Had That You May Have Too
- How many surgeries did you have?
I had 3 surgeries. 1: colectomy & appendectomy w/ ostomy. 2: construction of Jpouch (still w/ ostomy). 3: reversal
- How long did the process take?
Overall, about 7-9 months. My consultation was months prior to my first surgery. My first surgery was in December (2014), but it was pushed back to mid / end because I was sick. My last surgery was July 1, 2015.
- What was life like with an ostomy?
Having an ostomy was the first time I actually felt relief from the pain of IBD. It’s different. It takes time to adjust. At times my skin was aggravated & different stomas (formed from different parts of the bowel) are each unique. *Learned that the hard way*
- How long were you out of work / school? How long were you on bedrest?
My surgeon really pushed me. He pushed me to be active, he pushed me to do what I could as soon as I could. My first Jpouch surgery (the colectomy) only had me out for two weeks, but I’m pretty sure if I hadn’t gotten sick prior to surgery (I mean really sick. I had to be cut), he probably would have had me back sooner! After my second surgery I didn’t return to work. *It’s a long story, but my 2nd ostomy was very difficult for me.* Anddd after my third surgery, I don’t really remember because I was so excited. *sorry, i suck* 😛
- How did you remain financially stable while going through the surgeries?
Look into your benefits at your job! My FMLA covered my job and I opt”d for short and long term disability benefits (through my job), it covered 80% of my pay while on leave, only had to satisfy a one week elimination period (one time, for all surgeries).
- Did it hurt?
My first surgery didn’t really hurt. I don’t remember having too many pain meds during that time. My second surgery was really tough. Physically and mentally. My third surgery… it didn’t hurt… It was just different. Overall, I would just advise you to mentally prepare yourself for the second surgery.
- Where do you get your ostomy supplies?
Everyone is different. Your insurance company should have someone that handles their medical equipment. You can usually get that information just by calling. Sometimes your doctor or even your Ostomy Nurse will do it for you in advance (and give you the information).
- Are there limits on supplies?
I was very blessed. My insurance essentially had no limits. I could order a ton of things. Unfortunately, all insurance does not operate this way. Check with yours for more information
- Do you still have an ostomy?
- What can’t you eat with a Jpouch?
Things you don’t like. Lol. Everyone is different. Some people don’t like to eat corn and things like that, but I don’t really have any issues with that.
- What can’t you eat with an ostomy?
Everyone is different, but when I had an ostomy I couldn’t eat stewed tomatoes (my favorite!), at times corn… Hmmm… Think that’s about it.
- Do you ever forget you have a Jpouch?
Not really. It’s different from having active inflammation in your colon. You’re not always worried about it… But I don’t really forget I have it because it makes sounds and my stool is different from what it was pre-colectomy.
- What can’t you do with a Jpouch?
Get a colonoscopy 😛 haha. I do just about everything anyone else does.
- What is Pouchitis?
Pouchitis is inflammation in the jpouch. I do live with pouchitis, but it’s no where near as bad as living with an inflamed colon in my opinion. It doesn’t even feel the same.
- What’s your poo like?
Anywhere from water to toothpaste consistency.
- How hard is it to stay hydrated?
With my ostomy, and now my Jpouch, staying hydrated has proven to be a challenge. Something that’s been easing that challenge recently is a product called DripDrop. DripDrop is an Oral Rehydration Solution, ORS. I like it because other things like Gatorade just don’t taste good to me for some reason. I’ve talked more about DripDrop: here and here. For those of us living with chronic conditions it’s especially important to stay hydrated, DripDrop makes it a lot easier to keep that a priority.
- How often did you change your bag?
I have sensitive skin and Eczema so I changed more often than not. I would change around every 1-3 days, but I know a lot of people go longer.
- Can you take a bath with an ostomy?
- How many times a day do you go to the bathroom?
As little as once a day, as much as maybe 5.
- Do you experience urgency when you go to // need to use the bathroom?
Nope. I can hold it for a while too.
- How long is the longest you’ve “held it?”
8 hours. *I was super busy at work*
I hope this helps someone! If you have other questions just let me know and I may do another one of these or a video instead! Don’t forget to share with your friends!