Ulcerative Colitis Tips


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College Life, Being 21 and Having UC

Introduction:

I am 21 years old, attending Saint Louis University in Missouri. I am a undergrad in the Occupational Therapy program there. I’ve had Ulcerative Colitis for about 3 years, and it’s been a roller coaster ride. I absolutely love to travel! I’ve actually been called a gypsy on more than one account. I love to go camping, horseback riding, fishing, wake-boarding and anything involved with the outdoors. I do find doing the things I love as a challenge due to my UC. At one point I felt as though I had completely given up a normal lifestyle and who I was due to UC. I went about six months of having the disease and undergoing tests until I finally was given a name to what was going on. I was misdiagnosed four times until they figured out it was UC. I was diagnosed in the summer of 2010. I finally got REAL treatment in 2011, my GI basically let me go for a year until they gave me anything to treat the symptoms. But by that time my UC spread all the way up my Large Intestine and beginning into my Small intestine. Thus I have a hard time trusting Doctors.

Symptoms:

ABDOMINAL PAIN, fits of constipation with only mucus or bloody diarrhea. Depression and unbearable joint pain located mostly in my hands. Sporadic weight loss and gain, I basically fluctuate about 30lbs. I used to spend HOURS in the bathroom.

My Story:

UC has changed my life so much. I am just now starting to feel like going out to clubs and bars things like that. I still have flare-ups all the time, and hate feeling like the first thing I need find where I go somewhere new is the location of the bathroom. It is so embarrassing to stay in a hotel room or be at someone else’s apartment or house and be freaking out if they are going to hear me in the bathroom. It has been a huge struggle for me to move in with my boyfriend of three years. He has been so supportive throughout this whole thing, it makes me even more appreciative to have found someone like him.

Meghan with boyfriend at bar

My whole diet has changed as well, I no longer eat fatty red meat or spicy foods. I eat chicken, turkey, fish and deer for my meat products. Now that I am 21 I know I am not supposed to be drinking alcohol. But, I find that a hard request to be made of me. I stay away from beer because that seems to upset me the most. But, I will drink red wine or Margaritas things like that. Does anyone have any comments on things like that? I also have been hearing things about UC complications and pregnancy? It is not in my plan to become pregnant any time soon, but I am nervous about the thought of having any children at all and passing the illness on to them? Or even if I could become pregnant because of decreased fertility? I’ve been having a hard time with dealing with my stress as well. My doctor told me to try and avoid stress, because it was adding to my amount of flare ups. I just laughed when she told me that. I am a college student… stress is a huge component of college. But, If anyone has any suggestions for lowering stress that would be great, it is really starting to affect my academic performance due to these flares.

Where I’d Like to be in 1 Year:

In a year I would like to be done with undergrad, and beginning my professional student years in the Occupational Therapy program at SLU. I would like to not be taking so MANY PILLS! I would like to be in somewhat stable weight and not be experiencing so many flare ups.

Colitis Medications:

I take 4 Apriso capsules in the morning. 6 sulfasalazine tablets throughout the day. 1 prenatal plus vitamin (prescribed by Doc for folic acid). I also take a Butalbital, acetaminophen and Caffeine tablet to reduce frequent headaches. The sulfasalazine tablets are temporary until Humira (a Crohn’s disease injectable) becomes FDA approved for UC. Humira sounds scary I didn’t know if anyone else is in this position as well?

written by Meghan Christine

submitted in the Colitis Venting Area

 




college

15 Responses to College Life, Being 21 and Having UC

  1. Lara
    Lara May 17, 2012 at 7:13 am #

    I would say that if you’re going to drink alcohol, don’t drink in excess. I rarely drink anymore, but when I do I try to stick with vodka — as that’s pretty much the only liquor that won’t REALLY aggrevate my symptoms.

    If you can afford it, treat yourself to a massage. That’s been a MAJOR help for me when dealing with the stresses related to college.

    As far as the pregnancy thing goes, I’ve never been pregnant & am not trying to start a family. However, I found this great site that will give you more info on that. You have to look towards the bottom of the page to see the info. Hope it helps answer some questions! :)

    http://www.womenshealth.gov/publications/our-publications/fact-sheet/inflammatory-bowel-disease.cfm

  2. Amanda May 17, 2012 at 8:11 am #

    Hi, I was in the same situation! I am now an occupational therapist. I am stable in my disease without having to resort to humeria. I am on 6mp and I just got married. I still struggle with the pregnancy option as well as depression. Recently… Two days ago… My doctor said I was stable enough to think about pregnancy of I want. I am 26 years old and have a 5 year old step daughter , it is a challenge keeping up with her with the joint pain, headaches, and fatigue… I just don’t know if I could handle having an infant. I go to work, and come home and want to go to bed. I hear ya! Uc definitely affects your life!!! Good luck girl

    • Meghan Christine
      Meghan Christine June 4, 2012 at 11:39 am #

      Fist of all I thought it was so cool to be talking to an OT who has gone through this all! Second I hear ya about your step child. I nanny 3 children during the summer and winter break. They are very…energetic, I used to be with them everyday when I was living back at home. IT WAS SO HARD!! They were also so curious on why Miss Meghan had to use the bathroom so often, and why I took so many pills in the morning LOL. There ages are 4, 6, and 9. I’ve been taking care of them since the youngest was born. But now since the oldest is becoming more aware and asking things, she sort of understands why some days we have a movie day instead of that 2 hour bike ride ;) But kudos to you! I could not even imagine how hard it would be to do a full work day in an outpatient center or wherever you may work, and return home to a 5 year old!! Thanks for sharing your story with me! Good luck and I hope to one day be a fellow OT!!

    • Kiley December 26, 2014 at 4:52 pm #

      Should we start a club for Occupational Therapists with UC? I was diagnosed On May 1st of this year, a month before I started Occupational Therapy school. I was flaring for 7 months and finally went into remission around October. I was so grateful to have passed anatomy as my symptoms were worst during that course and I was not getting much sleep because I’d wake up several times in the middle of the night to go to the bathroom.

      I’d be interested in hearing about your experience of a OT student/practitioner with a chronic disease. I have tried to be optimistic, and believe that dealing with UC can help me empathize and have deep compassion for my future clients.

  3. Meaghan May 17, 2012 at 9:46 am #

    I started out with proctitus that progressed into uc. I had a baby 8 months ago. My OBGYN said that in most cases, uc gets better during your pregnancy. I had a flare-up for most of my pregnancy though. I did get it under control 1 month before I delivered. I did have a planned C-section though and I do believe most people with uc do have to have a c-section due to the risk of ripping and tearing.

  4. Sarah May 17, 2012 at 10:06 am #

    Meghan!

    It’s so good to hear your story. I’m sorry for all the pain and stress you’ve been through over the last few years. It’s really difficult as a young, college girl!

    I’ve felt like I’ve been in you’re same position, I’m 24 now and was diagnosed when I was 21, so the consumption of alcohol with UC has always been a major question in my mind. Since I was in my last year of college when I was diagnosed and freshly 21, I still went out and partied once a week, or every other week. (Probably not a good idea, and that was taming it “down”!) But as soon as I graduated and moved away from “college life,” it was much easier for me (and my now fiance) to avoid drinking heavily. Plus, I’ll admit, I got a lot of partying out of my system before I was of age. Now, I only drink on special occasions, and I try not to have toooo many (it’s easier to get “drunk” anyway when you don’t drink often). I hear you’re supposed to avoid beer and wine, and try to stick with distilled alcohol, (people say this, not doctors) but pop is what actually makes me have to run for the bathroom, and I don’t like anything too sweet, so there’s nothing to mix with it! So I usually drink wine or light beer.

    I also know exactly how you feel about your boyfriend and being embarrassed about this stinkin’ disease (pun intended). I was newly dating someone when I first was in the hospital and got diagnosed, and it was really embarrassing to talk about. I think I avoided most of the details. Plus, I realized he wasn’t the one for me when he wasn’t there for me when I was released from the hospital after two weeks! So if you find someone who sticks with you through this and is understanding, that’s so good! I met my now-fiance several months later (I was even on prednisone still, so I had a super swolen face!) and although I haven’t had a flare since before I met him (I’ve been in remission for 3 years! :) he knows my story very well and I have no problem talking to him about poop! ;)

    You mentioned being concerned about pregnancy in the future and that has always been something I’ve been concerned about. Especially now that I’m engaged and we’re planning to have a family within the next 2-5 years or so. I’m even one of those women who wants to have an all natural birth someday and wants to breastfeed etc. I’m currently on 6 MP (a very strong immunosuppressant that they even prescribe to leukemia patients!) and Lialda once a day. Even once a day is difficult for me because I take them with calcium, vitamin D, fish oil, and a woman’s daily vitamin. I’m so bad! I just hate it so much, I know I have to take it and I’ll skip a day almost every week and pretend I “forgot.” All of these drugs and past flares make me very scared in regard to whether I’ll ever become pregnant someday, and then if I do, will I be able to carry a baby to full term without any defects from these drugs? I so desperately want to be off the pills!!

    You can read more about my story on my blog post: http://www.ihaveuc.com/i-want-to-go-off-of-6mp-what-are-my-options-i-dont-want-to-relapse/

    Thinking of you Meghan!

    • Meghan Christine
      Meghan Christine June 4, 2012 at 11:23 am #

      Thanks so much for sharing with me!!

    • Meghan Christine
      Meghan Christine June 4, 2012 at 11:50 am #

      Thanks so much Sarah! I really appreciate you opening your experiences to me. And, Congratulations on your engagement that is so wonderful! Wish you two the best! I’m also glad I’m not the only one who “forgets” to take their pills. I have a hard time with taking so many in the morning and throughout the day. I keep backing off some of the pills and my Doc gets a little angry with me when my boyfriend tattles at an appointment. I would so love to be off the pills or at least reduced!! I hope you are able to get off your meds that you mentioned in your blog! And good luck with the natural pregnancy plan, YOU ARE SO BRAVE!!

  5. Sabine
    sabine May 17, 2012 at 11:14 am #

    I was pregnant with uc…. actually got tentatively diagnosed while pregnant but had to wait for colonoscopy after pregnancy to make it official. After giving birth/csection I had a hard time wanting to hold my baby but having to put him down while running to the bathroom or sometimes even taking him with me; that got me really depressed about the disease.

    Good luck to you

  6. Marlene May 17, 2012 at 7:06 pm #

    Hi Meghan,

    I just got diagnosed with mild to moderate UC and I now take Lialda as well as Hydrocortisone enemas. Right now I’m having a flare but I don’t go to the bathroom a lot and only have problems in the morning. My GI told me that my daughter could get UC as it can be inherited. I had my daughter late in life when I was 39 and at that time I didn’t have any symptoms of UC. I try to watch what I eat and don’t have alcohol. I have cut out coffee (which I love) and also cut out meat. I find that milk bothers me so I’ve cut out dairy as well. You just have to figure out what you can and can’t eat or drink. Everyone is different. I never had any problems when I was in college and my UC started as proctitis and then got worse over the years. I also think stress is related. Another problem I’ve had is joint pain and I found something that helps called NovaJoint. I’ve been taking it and it seems to relieve the pain. I wish you all the best!

  7. Blake May 17, 2012 at 8:42 pm #

    Hey Meghan,
    Fellow St Louisian here. Sorry to hear your going through this crap. We all know how shitty it can be. Anyway, I have good doctor I’d like to refer you to if you need one. Her name is Alexandra Gutierrez who deals with disease every day. She works out of Barnes Jewish hospital. Unfortunately, in my case, I went to a Gastroenterologist who didn’t know how to treat me and by the time I saw her, it was too late. I got my colon removed… but I’m happy I did. She said she wished I would’ve came to her sooner and the whole colon removal might not have been necessary. Anyway, good luck, let me know if you need more information on Dr. Gutierrez.

    • Meghan Christine
      Meghan Christine June 4, 2012 at 11:57 am #

      Thanks for the referral! That is so nice of you, but I actually go to Doc. Alexandra Gutierrez. I went around to so many different Docs that were not GI’s for about a half of a year before I met her. She is wonderful, despite what happened. I really wouldn’t go to anyone else. I may not be happy with some of the procedures she wants to do but she treats me as a stubborn child and makes me go though with what she feels as best. I actually appreciate that the most about her! LoL maybe I’ll catch you in the waiting room sometime! Thanks again Blake!!

  8. Noel May 18, 2012 at 3:46 am #

    Hey Meghan :)

    I’m 43, and was diagnosed April of 2011. Lialda worked for a little while, but I had to go back on Prednisone to control a flare. Long story short, in December of 2011 I started Remicade. It’s been a blessing at controlling my symptoms. I take it every 8 weeks now. Alcohol and tomato based sauces (spaghetti, chili, tomato soup) seem to aggravate it. My entire colon is affected.

    I’m an elementary teacher, so high stress here too. Xanax has helped my anxiety immensely. I used to be worried if I’d make it to work, or I’d job stresses would start a flare. So much better now.

    I’m also looking forward to Humira being FDA approved.

  9. slingshot May 19, 2012 at 8:31 am #

    Hej from Sweden!
    I’m a 25 year old kitesurfer/IT-assistant/happy guy with UC

    Alcohol:
    I tried it, travel around the world, had a lot of vodka and “J├Ągermeister”. I then realized I have a lot more fun without alcohol and haven’t been drinking ever since. I went through collage partying going to the craziest parties, but I stuck to juice water or whatever non-alcoholic things they could offer in the bars!
    Your life, Your choice.

    Genetics:
    As you get children your genes will get transfered to them, half of you and half of your partners gene will build your child. As there is a genetic connection there might be a higher risk of the child developing UC, but it’s certainly not for sure.

    Stress and lifestyle:
    What you do, eat, think, dream, affect your life. and your UC.
    I enjoy Acupressure, Thai massage and Acupuncture. I find it very relaxing and releasing.
    There is a lot of talking about food, the main point is to stick as close to the “source” as possible. The less processed food the better, I’m on a SCD + raw food diet (max heat your food to 45C/112F) which keeps me in remission together with 3000mg Mesalamine (or 5-aminosalicylic acid or 5-ASA or Asacol or Pentasa or Salofalk or .. you get the point ..) This medicine is like candy compared to all the others. Most people have no side-effects and they come in all different shapes, tastes and sizes to fit your intake. To get of flares I have been on prednisolone, for me it has been very important to get of as soon as possible but also to make sure I get into remission, always have a dialog with your doctor and look to it that you take down the dose as quickly as possible.

    I also want to add, the hardest thing for me was to take away all the sugars, but it helps.
    Sugar is in all processed commercial food; pasta, white rice, bread, candy, ice cream, sodas..
    Make your own food where you know what’s in there, and one last thing.
    Fermented vegetables is like cotton to my colon, cabbage, salt, random other vegetable or fruit + spices mix + mash and put in airtight container for 2-3 days in room temperature, then 2-4 weeks in basement cold 12C/50F or in refrigerator 4-6 weeks.

    Good luck!
    Be well!
    Have fun!
    Live life!

    • Meghan Christine
      Meghan Christine June 4, 2012 at 11:27 am #

      Thanks so much for all the pointers!! I really appreciate the stress and lifestyle section especially, I’m going to look into trying the things you suggested!

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