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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!
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First off, Congrats on graduating!

Second, double congrats for having the courage to move forward and head off to college. It is a huge step.

There are no 2 pouches or pouch experiences that are alike. 

Your best bet, especially now in the very begining of your pouches life is to keep a food diary or journal of everything  that you eat, drink or take...when, where and with what else (certain foods and drinks or meds will have different effects on you depending on the combinations).

You will eventually see patterns develop that can give your precious keys to what your new plumbing likes and does not like, which foods work best for you and in what combinations and which meds (if any) you need to keep things calm and happy.

Do not forget to write down when you eat or drink things...it does matter.

An example for me with my k pouch is that I have orange juice, water and coffee every morning with my meds and vitamins...that is what my pouch needs to get cleaned out (it works like draino on my Kpouch (I have to use a tube to empty out my pouch so things need to be liquidy))...If I eat anything in the  morning it blocks up my system so that is my routine and has been for over 20 yrs...but I cannot do that in the afternoon or evening...it would kill me...needs to be done in the a.m. on an empty stomach...at night it just burns.

The most important thing for  me since I got my pouch over 35yrs ago was to find my morning routine so that I was free for the day. Once I had that I had a form of pouch stability.

You may find that toast with peanut butter is your best breakfast food or a bagel...a lot of  j pouchers do well that way.

You will need something that keeps your pouch calm and stable but gives you lots of energy so test things out this summer and remember that it is still a baby pouch and is subject to change regularly...be prepared for surprises.

One thing for certain is that you must beware of dehydration...it can happen fast and come out of nowhere...so drink lots of fluids...water and something that can give you electrolytes if you are constantly on the go...do not overdo coffee, alcohol or sodas or sugary drinks...take small snacks with you (certain protien bars are good in a pinch but beware of the high sugar content is some...try making your own with rice crispies and peanut butter and then add stuff that you love and that loves you)...and if you get over tired get some rest...this was major surgery and it needs time to heal and so do you.

Good luck and don't forget to have fun

Sharon

Get registered with your college's disability services. You may never need them, but ensuring that they already know what you're dealing with before you run into any problems is a big help. If the idea makes you feel better, you could also ask about getting housing with a private or semi-private bathroom (instead of the big shared ones).

 

Other than that, drink plenty of water, go easy on the alcohol while you figure out how your pouch reacts to it and keep a small 'emergency kit' in your backpack with things like a spare pair of underwear, flushable wet wipes, anti-diarrhea medication and a couple of pantiliners/pads. Also helpful to keep a small supply of electrolyte drinks or powder in your bedroom; as they other poster said, dehydration can hit fast and hard.

 

Have fun!

Exciting times ahead at college! First of all, I would have enjoyed my college experience if I had already had my J-Pouch instead of active UC, so hopefully you're already better off.

 

1. Register with the school's disability support services office, if they have it. Then you can request accommodations for things like leaving during an exam for the restroom, or getting an extension if you need it. If your school doesn't have that, get a note from your doctor and communicate with all your professors, advisors, etc.

 

2. Find a student group or friends you can talk openly with. A lot of schools have a student group dedicated to those with IBD and/or chronic illness. If not, you can start one! 

 

3. Find what works for your diet and be unapologetic about keeping it. 

 

4. Stress is real factor for all college students, but for someone dealing with chronic inflammation it is especially important to stay healthy and keep stress at a minimum. For me that was:

-exercise (Swimming and biking are great even when your pouch is upset)

-REST REST REST

-staying active spiritually and in my faith community

-investing in meaningful relationships

 

Best wishes!

 

 

 

 

Congratulations!

My daughter went away to college about an hour away, but with no car on campus.

 

As the other wise folks on this site have said, register with disability services. They gave her letters to give to each of her professors stating that she could leave the class at anytime, and it did not give details as to why, just that she had a chronic illness and may need to leave the classroom.

 

She did not have a private room, but did have a room located right across from the bathrooms and she chose an all female dorm because some of the co ed dorms were also co ed bathrooms.

 

She was on a meal plan, since her dorm had no kitchen facilities, so she would choose wisely for what foods she could tolerate at the time. She had to stay away from the roughage during those early years, but everyone is different.

 

She had a locked box with a built in combination lock,  she still uses, to keep her medications and personal important papers in.

 

My daughter is now going to college to get her PhD in Chicago which is 13 hours by car from home, so she has a doctor there that can follow her for check ups, etc.  

 

You will get better at holding it, that happens with time.

 

College can be stressful at times, try to stay "in the moment" and take care of yourself.

 

Check out the CCFA website to see if they have a "college connection" person on your campus or at a nearby college. You can email them and ask questions about your particular school and they may have good ideas for you.

 

Best to you in your next chapter of your fantastic life!

Just wondering how you are doing at college. I went away to college about 9 months after getting my J pouch. I had a really good experience with my pouch post-op so I hope you are too. I was always very open about my surgery and always showing everyone my scar b/c this was 1993 and there was no laparoscopic surgery then. Whenever things got tough for me in school,...exams, boys, etc, I told my friends that I didn't have a colon and they were going to have to give me a break...hahaha. Don't forget that your mom isn't too far away and she is worried about you too (know that now since I am on the mom end of things). Wishing you only the best with your new pouch!!

I forget that college kids are up late!! I work 7 on/7off night shift as a pharmacist and I start my week tomorrow night so that is why I am up so late!! Hahaha. This probably isn't even late for you!!I am having some issues but I was re-diagnosed as having Crohn's 5 years ago so that really mixed things up for me. That being said, I would do the J pouch again in a heartbeat. I don't know what the fate of my pouch will be but you are way too young to worry about that! AND everyone's story is so unique. I have really learned that from posting and reading posts on this site. This pouch got me through a lot of years, a lot of fun times, and a lot of boyfriends that I probably would have been too self conscious to date with an ileostomy. Don't waste your time with your pouch worrying about what could happen. Enjoy your youth and I hope your pouch last for many more decades to come!! Best of luck with school too. Those first few months were a little rough for me...not b/c pouch...just b/c of college stuff in general!

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