Skip to main content

Hi everyone, long story short I was diagnosed with UC March 2014, a few months later it become very severe, meds stoped working and I was always in a flare. Fast forward to April 7th 2015, had a total colectomy step 1 of 3 for me, may 24th I graduate high school (yay), June 3rd I had my 2nd surgery, loop ileo and creation of jpouch, July 30th 2015 I had my reversal. I had LOTS of complications with the first two surgeries so hopefully that was the end of the that.

Anyways, a few days after my take down and I have a partial blockage. Made it through that and I'm just having some problems with holding it in/leakage. Hopefully it gets better over time.
I would just like to know if any of you could give me advice on being in college with a jpouch. Snacks I should keep in my dorm, food to eat/avoid, medicine, vitamins, precautions I should be taking etc. just really any thoughts and tips you've got to offer send it my way! I'm really nervous to be leaving my mom and living two hours away with my jpouch, just want a smooth transition and freshman year. Thanks in advance!
Original Post

Replies sorted oldest to newest

I commuted to school 3.5 months after takedown. Did not stay in a dorm/on campus. Had no issues, and did nothing out of the ordinary. Even went out with friends a year later to clubs and danced and drank without issues.

Whatever you do in your life now, just keep it up. My surgeon encouraged me to defer going to the bathroom, to stretch the pouch. I recommend that, for sure, and keep up on your kegel's. Squeeze, squeeze, squeeze!!!

You are still so early on post takedown so don't be concerned at all with difficulty holding right now.  Yes, you do want to try to hold longer periods of time right now (as you can tolerate) instead of going every time you feel an urge.  I remember my first month post take down getting the "I have to go right now!" feeling several times a day, but I would push through it and be able to hold for another hour or two.  Then that feeling just went away one day.

 

Great news is that there are lots of bathrooms on a college campus!  So you should be covered on a daily basis from that perspective.  If you have a long class, such as a 4 hour lab, or you have an exam, you can always take Imodium beforehand to ensure that you'll make it through. 

 

I don't think anyone can give you a ton of food suggestions yet as every person tolerates foods differently and you'll have to see through trial and error what works for you.  In general, eating bulking type foods will thicken your stool (breads, cheese, meat) and eating food with insoluble fiber (fruits and veggies) will make things more watery.  Not true for everyone, but the watery stuff can make you feel like you need to go more often.

 

I personally do not drink alcohol, but of course, many college students do.  I would caution you there as alcoholic drinks tend to have a lot of sugar or carbs that can aggrevate your pouch.  Someone else would be much better to provide advice regarding drinking with a pouch as I have little experience, but I do know for the few times I do have a drink or two, my pouch is not happy the next morning.  I can definitely advise that if you do drink, make sure you take in lots of water as well.  We pouchers do dehydrate easier.

 

Best of luck to you!!  You'll do great :-)

Your pouch is very new-- it takes time to heal, as I'm sure you know. Leakage should stop. My 16 yr old son is in a similar situation. UC didn't respond to meds, hospitalized 2 times for UC, got PICC line for TPN, then 3 more hospitalizations for surgeries- colectomy & ileostomy, emergency bowel obstruction and then J pouch. He got his J pouch June 24. He's entering 11th grade but still getting tutored for 10th. We don't know if he'll be ready for a full course load in Sept. His friends are doing SAT prep, but he has no time for that. We are encouraging him to consider taking a year off after high school to either work, go to community college, or volunteer. I realize it's probably not something you want to do, but I imagine it wouldn't be  problem to defer your admittance for a year. In the scheme of things, starting college at 19 instead of 18 isn't the end of the world. Your health is most important.  Best of luck to you!
Just realized I didn't really answer your question about tips. I would avoid corn, nuts and seeds, for starters. I would discuss Imodium and Beano with your doctor, if you haven't already. Beano helps digest other veges, not just beans, and reduces gas. In the early weeks, my son said stool came out with gas, so reducing gas was helpful. I would get disposable absorbent bed pads so that if you leak when you are sleeping, you don't have to wash your bedding. I'd also get pads for underwear, just in case. Again, it could spare you some laundry and embarrassment. (I recommend ultra thin overnight pads for women rather than urinary incontinence pads. They are thinner and more comfortable, but very absorbent.) And you may want to consider carrying around a change of clothes, plastic bag, baby wipes in the beginning until you are sure you don't leak anymore. Otherwise, you'll have to run back to your dorm if you need a change. You can also go to your college's disability office. You could request permission to go to the bathroom in the middle of class, even if it is during an exam. (This accommodation is in my son's high school 504.)

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×