Living with UC

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personman
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/25/2008 1:19 PM (GMT -6)   
Hi guys, I just had a colonoscopy this morning and was diagnosed with UC. I'm 19 and going to my sophomore year in college next year
For those of you dealing with this in college, what would you recommend for a living situation? Right now I'm signed up to share a room with a good friend, and it's a suite style room, so 4 people are going to be sharing the same bathroom. (thats 2 random people I have never met before)
I'm about to start on my medications, I think I'm taking Lialda and Prednisone... I don't know much about UC even after reading up on it on google, so how bad is this going to be? Should I look in to renting my own single room apartment before it's too late? I tend to be a shy person and I don't know how well I'll deal with this whole thing...

on a side note I play paintball a lot and I'm hoping this doesn't affect it... fingers crossed...

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/25/2008 1:32 PM (GMT -6)   
Personman....maybe I can help out...

I was diagnosed with UC at age 20...I am now 34.... I went through college with UC. I am not going to lie - it is a challenge. The stress from class, etc can make it hard...also the diet of beer and wings will not help! Do not isolate yourself but be sure to surround yourself with people who understand your condition (easier said than done). If you are running to the bathroom a lot, and are worried about it being occupied, then consider a single room place - you will feel more secure and less stressed.

I consider myself a normal guy. I dated, partied (still do occasionally but Im gettin too old for that crap), also played paintball (speedball and woods, etc. etc..), raced RC cars, rode (and still ride) 4 wheelers, played drums in a band, etc etc... You can have a normal life but you have to find an inner strength to get yourself through the phobias and general BS that will come along with having UC....

This site is a great place to lay it all out and talk to people going through the same thing.
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety) when needed, Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)  "I poop in the woods because I can"


personman
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/25/2008 2:14 PM (GMT -6)   
Along the line of beer and wings - are there things that I should avoid eating? I don't usually drink alcohol but I do go to a few parties every once in a while. Will that affect me?
I don't think I'll end up isolating myself. I've been dealing with these symptoms for like 4 years now so I kind of know what I'm dealing with here.
Do these symptoms tend to get worse over time or is this as bad as it's going to get?
Right now I'm just wondering if I should get an apartment so I don't make my roommates uncomfortable or something... not to mention privacy would be nice (and more control over my diet than what they serve at the dining hall) but I do feel like I would be kind of missing out.

It's just kind of overwhelming to know that something is actually wrong with me. I'm glad they found something though, dealing with these symptoms sucks!

Thanks for the quick reply!!!

Blaine
Regular Member


Date Joined Jul 2006
Total Posts : 45
   Posted 7/25/2008 2:19 PM (GMT -6)   
Depends on how bad your UC is and how often you flare. I was diagnosed with mild to moderate UC 17 years ago when I was 31. I was a USAF pilot. I was grounded initially, but I got back on flight status and held three more flying assignments, had three deployments to the Middle East, and retired form the USAF with 24 years of service. Since UC I also: raced cars for 9 years, engaged in competition shooting, earned a masters degree, hunted and fished in remote areas, and played trumpet. I actively play trumpet, and hunt/fish/shoot now. In fact I'm going flyfishing for steelhead this evening. I should add I ALWAYS carry toilet paper in my backpack/fishing vest with me on these excursions, and often a travel pack of Tucks.

For me, UC just adds another thing I ocassionally get sick from. No, my bowels are never perfect even when I'm in remission, but 90% of the time UC is not an issue.
Male, born 1960
Mild UC/Pan Colitis diagnosed in 1991
Sulfadene until 1996, Asacol since
 


hekela
Veteran Member


Date Joined Nov 2006
Total Posts : 731
   Posted 7/25/2008 2:31 PM (GMT -6)   
hello and welcome
as far as food and drink affecting you, everyone is individual but most of us do have a list of things that we avoid. the best way to find out is to keep a food journal (very tedious but worth it). i was surprised at the things that were bothering me but once i eliminated them it helped a lot. people will have specific advice about food (avoid sugar, spicy food, or whatever) but really you have to find out what makes YOU feel better and what makes you feel worse.

symptoms can get worse over time (especially if untreated) but hopefully you'll feel better once the meds start working. if you've been dealing with them for 4 years with no meds then i'm guessing it hasn't been horrible. when i was at my worst i didn't leave the house for a couple of months because i sometimes couldn't even make it from the living room to the toilet in time. some people have had trips to the ER from dehydration or whatever if things just won't get under control.

but on the other hand, many people have years and years of remission and can eat whatever they want. so really, everyone is very different.

so, the decision to get your own apartment really depends on how bad things are for you, and how you would feel about one toilet if things did get worse.

as you read thru some more posts you'll also learn some things that have helped many of us... probiotics, fiber, etc. and again, these things can help some people but not others. i had one brand of probiotics that didn't help and another that does. so you'll still have to take all the info and filter it thru what actually works for you.

anyway, hope you start feeling well soon!!

i miss paintball!!! we haven't played in ages and i don't even have my old marker any more. i hope to get into it again when my boys are old enough to be safe with the equipment. :)
29, happily married, stay at home mom to 2.5 year old son. due to have another boy 9/17/08
UC (probably pancolitis, but no c-scope yet), diagnosed June 2006, started having major symptoms sometime in January 2006, about 3 months after childbirth. 2nd flare (minor) may 2007 after taking caprylic acid for 2 weeks.

-Prednisone 8/28/06-2/28/07. and again may '07, 8 week course.
-Prayer! asacol, probio, ground psyllium husk, prenatal, folic acid, cal-mag

may you live all the days of your life.


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/25/2008 2:43 PM (GMT -6)   

Hey Personman!

Sorry to meet you under these conditions, but welcome to the forum!  I was just diagnosed last January and I'm 30, so I didn't have UC in college.  But in college I did live with 3 girls for a couple years and then by myself for senior year (I was student teaching and couldn't handle roommates).  Anyways, from what I remember of living with other people, it seemed like there were hardly times when all of us were home.  Everyone's schedule is so different, and you will be doing a lot of stuff outside your place, too.  So I don't think you should worry about what your roommates think.  Just explain your condition as best you can and ask for their understanding.

As far as living alone goes - its SO boring.  It was the best thing for me academically-speaking, but man was I bored and lonely.  Don't miss out on having a great time with your roomies if you don't absolutely have to. 

I hope this helps you.  Good luck at school!

PS.  I've heard other people say that they can have alcohol with UC, but it was one of the first things I identified as a major trigger food for me.  So just go slow and be careful. 


Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG (as needed).
Diet/Exercise:  Trying sunflower seed thing.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Showing improvement after a few days with sunflower seeds.
 
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/25/2008 6:51 PM (GMT -6)   
Hi personman, Welcome. I know what you mean by being overwhelmed that there is something wrong with you. I feel the same way. Don't worry too much. Use this forum for a support group. Also, when I was diagnosed, they put me on medication and I started to get better right away. Let's hope for the best for you too. I would try to eat healthy and drink a lot of water. Best of luck to you, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/26/2008 10:56 AM (GMT -6)   
Hi personman! I'm 19 and going into my second year of college as well, except I was diagnosed last year. As for housing situations, it's really up to you and how you're doing. How mild or severe is your UC? Do you think you'll be in remission by the time school starts?

Last year, my UC was pretty mild since Asacol (similar to Lialda) put me into remission right away so I didn't even have to tell my roommate about my UC and we were lucky enough to have private bathroom in our room. Fortunately, when I flared 2nd semester, my roommate had already moved out on her own. I could not even imagine how horrible it would have been if I had flared with my roommate still there (ex. needing to run to the bathroom 5x while she's taking a shower). I ended up signing up w/ my college's Disability Services and they helped me find a single room with private bathroom on campus b/c my UC just kept getting worse. I personally like living on my own b/c I have my own space and only have to worry about my schedule, but that's just me.

I can't really comment on alcohol and partying, b/c I'm quite the introvert and it's something I'd avoid even if I didn't have UC. However, I did have to take naps everyday (even in remission) b/c I'd be worn out from going to classes. Sometimes that was hard to do when my roommate would talk on the phone for hours or her friends would come in when I wanted to sleep.

Anyway, I hope you start feeling better really soon and let us know whate you decide!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day
*exploring the option of surgery
 


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 7/26/2008 11:49 AM (GMT -6)   
I vote single room if you can possibly get it. Till you know if you are an easy or tough case, you will spend some time in the "potty"!
4 to a bathroom is going to be tough. Esp. if you flare or have to do nighttime enemas. Privacy is important.
Daughter,14 diagnosed 1-08 w/ UC .learning from you all.
Asacol, Prednizone 50mg, major flare, now off!, Hosp. @U of C, Comers twice this yr. Low residue diet still
began 6MP, ,horrible acne, and fearful of future.
trying probiotics, Omega 3, and keeping up with doc visits.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/26/2008 4:35 PM (GMT -6)   
Could you look into housing that has 2 bathrooms maybe? I lived in an apartment with 4 other girls but we had two bathrooms, only one of which had a shower. Also, how close will you be to other bathrooms. For example, if you had a dorm right next to the library and your roommates were hogging the bathroom you could just run to the library. I guess part of that depends on how bad your urgency gets. Also, a lot depends on how shy you are. My roommates were my best friends and I had no problem saying, "get out of the shower, I gotta poop." But like someone else said, we were very rarely getting ready at the same time. We all had totally different schedules. You just have to decide what is best for you. Do you think you will make friends in your dorm and can use another suites bathroom if you have to? Will the dorm have a visitor bathroom? Mine did and in emergencies I would use that one. Call your school and talk to housing and just find out what other options there are. Maybe you can live somewhere w/ your 1 roommate and one bathroom.

But whoever raised the enema issue raised a great point. I have crohns so I don't have to worry about those. But sharing a bedroom with someone would be hard considering you might have to do that.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 7/26/2008 9:41 PM (GMT -6)   

So sorry, my DD was diagnosed at 5.  I bought this stuff and it works great, might take some pressure off.

http://www.drugstore.com/products/prod.asp?pid=187683&aid=336064&aparam=%7Bkeyword%7D&scinit1=%7Bkeyword%7D


Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


aneerby
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/26/2008 10:36 PM (GMT -6)   
I was just diagnosed with UC last month, but college wasn't that long ago. in my experience, living in the dorms was a good way to meet new people and learn to deal with college life and life away from home. late night study sessions and such are a great memory. i recommend still trying to live on campus to get the "college experience" but i suggest either a private room or a dorm with hall bathrooms (not much privacy but at least you can go when you gotta)

26,
Diagnosed with UC June 2008. On Asacol...many questions still unanswered


personman
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/27/2008 11:22 AM (GMT -6)   
First of all, thanks for all the posts! :)
I feel a bit better about my situation now.
I did live in an on campus apartment last year, and I did flare a few times while there and it wasn't so bad. If this Lialda stuff helps, then it shouldn't be that bad of a situation at all.
I think my UC is fairly mild but I don't have much to compare it to. Like someone said before, I did go 4 years before getting it checked out by a gastroenterologist. These last few months have been awful and that's what drove me to go see one.
I think my suite room will be fine now. Unless I get stuck with two suite mates that I really don't like. And like Fitzy said there might be a visitor bathroom somewhere. I don't know yet.
I don't think I will have to do enemas, I haven't talked to my doctor much about it since I was just coming off the IV when he gave me my diagnosis and prescriptions so I'll talk to him next time I see him.

Maureen4RU
Regular Member


Date Joined Dec 2007
Total Posts : 42
   Posted 7/28/2008 11:53 AM (GMT -6)   
Personman- I completely understand what you are going through. I was diagnosed with UC when I was a senior in highschool and was very nervous about going away to college. My best friend and I decided to room together, and like you, we had to share a bathroom with another room and two people we didn't know. It was a blessing having my best friend with me because we could just make light of my having to poo more than everyone else. I was even given the title of "Bookie Queen." I was shy and embarrassed about having this condition and it was really hard for me to tell people about it. I ended up just emailing my suite mates telling them that I have UC and I gave them a link to a website that described it. They were very understanding, as most people will be. I also sent an email to my professors letting them know what I have. Suprisingly, many of them had never heard of UC and with my explanation of it, they were very understanding about letting me leave class early, if needed. A lot of them even let me miss class all together when I was sick and would send me everything I needed by email. I hated feeling like I was getting special treatment because of it but, seriously...those of us with this condition deserve a little bit of special treatment!!!
 
I have learned that humor plays a huge role in helping me deal with this. As hard as it sounds, being open with people right away about having UC will be the best thing for you.
Maureen - 25 years old
diagnosed with UC on my 18th birthday
Colozal (6 pills a day)
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/28/2008 12:08 PM (GMT -6)   
Personman,

sorry you are going thru all this! When I was first dx'd I was majorly stressed out in life, but once I took and stayed on my sulfasalazine or Asacol I was fine for 7 years (then had to stop taking it). I could drink like a fish and the only thing that bothered me was coffee when I was flaring (it would add to my symptoms). I'm not saying it's ok to drink like a fish, drink responsibly.

Thank goodness alcohol does not affect me. I dont drink much anymore, just been there and done that and like to wake up early and do stuff (as opposed to sleeping off a hangover all day), but I do enjoy having a few cocktails now and then.

I have found it is really helpful to just be upfront and say, hey everyone poops, I just poop a lot more, try to make it funny (it's not but, may help explain in a more comfortable way).
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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