Trying to Survive College with UC as an Early Childhood Education Major

Intro:

Hi! My name is Christina. I am a 21 year old, senior in college from northeast Pennsylvania, studying to be an Early Childhood Education Teacher. I was formally diagnosed with ulcerative colitis in March of 2012. I have been struggling with the symptoms since 2005 and have not been able to get my ulcerative colitis into remission. My last colonoscopy was on August 14th and the results showed that I have severe left-sided ulcerative colitis. I am currently taking prednisone, Asacol HD (max dose of 4800 mg daily), and have tried countless medications such as Lialda, Uceris, Canasa, taken an herbal approach, and tried several other supplements such as Metamucil, Immodium, etc. Originally, the doctors thought I had a “mild” case, but after this past colonoscopy showed my colitis is now severe, the doctor wants me on Remicade infusions along with all of the other medications I am currently on.

Some more about me:

Something interesting about me is that I am a former champion Irish dancer. I used to be very active, as I danced for 13 years and even competed in Ireland. My hobbies are cooking (which is something I have become good at since being diagnosed with UC), baking, scrapbooking, watching movies, doing yoga, traveling, and spending time with my friends and family. I am from the Poconos and live with my parents, grandparents, sisters, and boyfriend of three and a half years. Fortunately, I have a very strong support system that is trying to help me get through this difficult disease.

Symptoms:

Currently, I am struggling with bloody stools and severe urgency. The urgency is so bad, it makes it difficult for me to leave my house. I even have a bucket and change of clothing in the back of my car just in case. Unfortunately, I have had to use it many times. Right now, I am on prednisone, which has helped stop the bleeding. However, prednisone is only a temporary fix and at some point in the near future, my symptoms are going to start to return.

My Story:

When I was in middle school (approximately 2005), I was sick almost every morning before school. I had trouble eating breakfast and would have diarrhea in the mornings. In fact, I had my dad drive me to school so I wasn’t stuck on the bus without a bathroom. My stomach would usually feel better as the day progressed and I really never thought much of it.

In high school, approximately 2009/2010, the bleeding started. However, I only had occasional bleeding on and off – approximately six months on, six months off. I would go for months without having any stomach problems at all! Even though I knew something seemed “off” since I had bleeding, I never said anything because I was young and scared. I graduated high school in June of 2011 at the top of my class and was having no stomach problems. I started college that fall, and was living on campus just like a normal 18 year old.

In the beginning of January 2012, the bleeding started again while on vacation. Again, I didn’t say anything to anyone, hoping it would “go away” like it had in the past. Then, the spring semester of college began, I went back to school, and the bleeding continued. Now that I was living away from home, it made it even more difficult for me and I decided to tell my mom and dad. On March 5, 2012, I went for my first consultation with a gastroenterologist. On March 15, 2012, I had my first colonoscopy, which showed patterns consistent with ulcerative colitis. The doctor started me on Asacol HD (2 pills, 2x per day) and Metamucil (2x per day). After that, my gastroenterologist left the practice so I started with a new doctor. He started me on VSL #3 (1 pill, 2x per day), changed the Asacol to 2 pills, 3x per day, ordered a Small Bowel Series test, and a Prometheus Diagnostic blood test. Fortunately, the results of the small bowel series test came back norm al, but the results from the Prometheus laboratory tests confirmed that I have IBD in a pattern consistent with Ulcerative Colitis. In August of 2012, I went for my first flexible sigmoidoscopy, which proved once again that I have moderately active ulcerative colitis, and was put on Canasa suppositories. I was sent to see a nutritionist, who put me on a special diet that was supposed to be for people with IBD. She recommended that I restrict insoluble fiber and increase soluble fiber, restrict foods high in fat, and lessen my intake of dairy. On October 3, 2012, I had my first “accident”. It was extremely embarrassing and I didn’t know what to do! I went back to the doctor, who added Iron 325 (65 Fe) Mg (1 tablet daily), Bentyl 10 Mg (1 capsule, 2x daily), Oscal with Vitamin D 500 Mg (1 pill, 2x daily), and Vitamin C 1000 Mg (1 pill, 2x daily). At this point, I was having trouble with incontinence, still bleeding, and going to the bathroom 5-7 times pe r day. After being diagnosed, I was forced to transfer to a local college and become a commuter, as the college I was attending could not provide me with a special diet, and living in a dorm was not practical due to the amount of time I needed to spend in the bathroom. I felt like my whole life was being controlled by this horrible disease!

After being on Asacol HD for over a year (along with a variety of other medications), I decided to take my health into my own hands. In May of 2013, I weaned off of Asacol (I took 1 pill less per week), weaned off Bentyl, and started eating Gluten free. I saw no drastic changes in my symptoms until June 16, 2013, when I started having diarrhea again. I suffered from a horrible flare up for over one week and couldn’t hold down any food at all. At the end of the month, I was put in contact with a Chinese herbalist and acupuncturist. On July 3, 2013, I started taking Chinese herbs and continued eating Gluten free. I began feeling so much better. The bleeding had stopped, but the urgency was still there. For the remainder of 2013, I continued taking various Chinese herbs, felt good on and off, was still having very urgent bowel movements, and had several “accidents.” The fear of having “accidents” gave me lots of anxiety about ulcerative colit is.

In 2014, I was still taking Chinese herbs and no “traditional” UC medications. I tried acupuncture treatments and yoga, but saw no results. I also started taking Slippery Elm bark and Green Superfood to supplement my herbs. I suffered through another semester of college, still having very urgent bowel movements and going to the bathroom 4-5 times before leaving for school. On my 30 minute trip to school, I have even stopped 2-3 times to use a public restroom. Traveling is seriously difficult due to the urgency!

In May of 2014, I started the SCD (Simple Carbohydrate Diet) and saw much relief after reading Adam’s book. The bleeding seemed to subside, but the urgency still wouldn’t go away. However, after going for almost a year without being treated by a gastroenterologist, my mom recommended that we see a doctor again.

The third gastroenterologist dismissed my case as “mild” without doing any testing besides a routine blood test. My CRP and SED rates were extremely elevated, and I was iron deficient and had many other levels that were off the charts. He started me on Lialda and Uceris, neither of which gave me any relief. We decided to go to a fourth doctor, who sent me for a colonoscopy immediately. The results of my second colonoscopy showed that I now have severe left-sided ulcerative colitis. I was put back on Asacol HD and was started on 40 mg of prednisone. Now, the doctor has tapered my dose of prednisone to 30 mg daily and wants to start me on Remicade infusions within the next week.

I am a senior in college who just wants to live a normal life and fulfill my dream of becoming a teacher. These immune suppressing medications scare me, as my job deals with children, who get sick frequently. My college professors are unaware of what ulcerative colitis is, and do not take my condition seriously because I appear to “look fine” on the outside except for the fact that I am pale and thin. If you knew me three years ago, you would not think that I look fine at all. In order to open my professors’ eyes to this horrible disease, I shared a link to a PDF from the Crohns and Colitis Foundation website. It is really sad that there are so many people struggling with this disease and that there is no “cure” besides surgery (which I’m not sure is really a logical option). Ulcerative Colitis has affected my daily life and I just wish it would go away for good!

My family and boyfriend are extremely supportive and are doing whatever they can to help me, however, I am worried about my future. Will I be able to become a teacher? Will my disease ever go into “remission?” Is Remicade really the best option? What if Remicade doesn’t work? Will I be able to safely have children some day? What are the long term effects of all of these drugs? I feel like the doctors have bullied me into taking these horrible drugs, and am not sure where to turn next. Even though my colon causes me all sorts of trouble, I like it enough to want to keep it in my body!

If anyone would give me any advice, I would greatly appreciate it!

Medications / Supplements:

I have tried: Asacol HD, Bentyl, Canasa, Rowasa, VSL #3, Lialda, Uceris, Prednisone, Chinese herbal supplements, Green Superfood, Slippery Elm, Metamucil, Citracel, Immodium, Iron, Vitamin D, multivitamins, Vitamin C, calcium, etc. I have also been on a gluten free diet and the SCD diet.

So far, the only relief I have had is from prednisone, however, there are many other side effects that have been caused from those little white pills. Additionally, I saw some relief from the SCD diet and would recommend anyone with IBD to try it.

Currently: I am taking 30 mg of prednisone, 4800 mg of Asacol HD, Iron, Vitamin D, a One a Day Multivitamin, and I am scheduled for my first Remicade infusion in two weeks.

written by Christina H

submitted in the colitis venting area




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19 Responses to Trying to Survive College with UC as an Early Childhood Education Major

  1. vinod September 17, 2014 at 12:15 am #

    Hello Christina,
    I am sad after reading all this. I do know why on earth only people around 20-30 years suffers most when it is the time for us to enjoy and live life completely. May God give you good time very soon and all of us. I am sure nothing help i have tried too almost all tech tics you mentioned. lets not loose our hope and keep faith in ourselves that one day I will be completely free from this massacre.
    wish you good luck
    thanks
    Vinod

    • Dianne September 24, 2014 at 6:18 pm #

      Hi Christina,
      My name is Dianne. I am 68 years old and got UC when I was 66. I was in the hospital and had a colonoscopy and my doctor told me it was one of the worst that he has seen. He wanted me to take shots of humeria and I looked it up on the web. I had a heart attack in 2011 and the side effects would have made it worse. There were so many horrible side effects. I read on this site from a person named Bev that she had taken Probiotics and L-Glutemine and was better. I started taking them an in a few weeks my weight went from 119 to my average weight of 154. I was in Remission and feeling great. My bleeding stopped and I had my energy back. I can go out and not feel like I’m going to poop in my pants, as it had happened way to often. I hope this will help you. God bless, I hope you will feel better.

  2. Julie September 17, 2014 at 4:13 am #

    Hi Christina,
    I am also an Education major, although I’m much older than you! I was on Remicade for a while and it really did help. Once I was no longer able to get it, I resorted to smoking which has worked better than anything. Yes, I DO want to try Humira (sp?) once I can figure out how to get that, but at this point I’m so busy with working, going to school and taking care of my own kids, that I am sticking with smoking just to get through the days.

    I’ve read here that smoking just 5 ish cigs a day will alleviate all the symptoms of UC. Try it if you want a quick fix now!

  3. Julie Brethauer September 17, 2014 at 4:49 am #

    Hi Christina,
    I have a son who is almost 21 who was diagnosed in his senior year of high school with moderate pancolitis. He was given steroids, then lialda for a with off and on results. After a year it progressed and became more severe. Was back on steroids among with lialda. We found research about SCD in the book Breaking the Vicious Cycle and asked the doctor about it. They dismissed it saying diet wouldn’t effect it. They pushed for Remicade. After thinking and praying about it for some time he chose the diet over Remicade. He started at the beginning of the diet and had never added dairy…even though it allows some..We were always suspicious of it. Every time he had any before his symptoms worsened. It has been about a year now and he is doing well.He had a colonoscopy in June that showed NO SIGNS of UC anywhere in his colon and the doctor said he would have never known he’d been diagnosed with UC. We were shocked, because it had been moderate to severe over his entire colon! He is off at college right now studying for an engineering degree! I would recommend following the diet from the beginning and leaving out dairy.

    • Julie Brethauer September 17, 2014 at 4:52 am #

      Oh…also another very very impotent thing that I think has helped him is a probiotic…. think it is called Scodophilus. We purchase it on Amazon from an SCD company. God bless you… praying God will bring healing to you soon. ((huggs))

  4. Lynn September 17, 2014 at 6:23 am #

    Hi Christina –

    Wow all these posts hit so close to home for our family and son! My son is almost 21 and in his senior year of high school was hit with the UC diagnosis after a bout with the flu. It has been a struggle ever since. He’s been in a state of flare, no remission since December 2011. As an almost 21 year old young man he loves to eat. What he eats and drinks is a daily struggle. He currently is following the Autoimmune Paleo Protocol which our family has adopted as the new way we eat. The Autoimmune Paleo Cookbook by Mickey Trescott, NTP is my AIP go to book. All her recipes are wonderful. Everything is simple and the writing is to the point. Love the wonderful from scratch wholesome meals and we all feel great except my son. He struggles with the restrictions especially fruit. Which being high in sugar causes him to run to the bathroom. There are small glimmers of hope with his symptoms but he has a way to go for complete healing. He wants to be a normal college student. Before he went back to school he was doing pretty well but the stress has taken him back a few steps. He knows every bathroom in his travel path. He has his own apartment this year as thought it easier with his different than normal lifestyle than the average college student. A lot of details I’m leaving out as it is a daily struggle for my son. It has affected his relationships with friends as well as my life in the way of having to quit my job to help him and cook for him. To help you Christina I’m all about the diet for healing. It can be difficult as trying to find what specifically works for you. My son hasn’t seen a GI doctor for sometime and wants to see one to get on some meds. That will be a sad day for me as I know he will come around again to the diet or FMT whenever the details of that procedure gets approved here in the states. Three weeks until the GI appointment and just praying that there are more significant improvements with the diet, enough for him not to throw in the towel. I have gotten very creative with food. Love the chicken and beef bone broth and actually he is starting to like. He takes quite a few supplements right now the usual l-Glutamine, GutPro probiotic, colostrum, fish oil, 2 iron supplements, vitamin D and gelatin powder and all in addition to the Autoimmune Paleo Protocol scaled down for him at this time. He can add foods in as his symptoms improve. Believe me I know how difficult it is for a college student to navigate this lifestyle when you are trying to do all the wonderful fun things people your age should be doing. This weekend my son had a meltdown and we all cried and the family just held one another and cried for our broken family member. My son is trying as much as he can, he has a family support group and a personal chef. We also have recruited a health coach to help us meeting with her every week via the internet. Hope this helps you in someway. If anything you are not alone. It’s great that you are reaching out to this website. My son just wants to be normal and chooses to limit himself to information or writings about UC I think in hopes that he will wake up someday and the bad dream will be gone.

  5. Lynn September 17, 2014 at 6:38 am #

    Hi Julie –

    I have questions for you. So your son was on the SCD diet no dairy for a year. How long did it take for his symptoms to improve? Have you added new foods in? Any dairy or grains other than what is on the SCD? My son tried the SCD last fall but did eat the 24 hour yogurt which I now feel is too advanced for most in the beginning. What does your son eat now at school? How about alcohol? I’m being real as the college life can be about the parties and alcohol. And he is just taking the SCD probiotic supplement? Thanks for your input here will share with my son as his hope is dwindling.

    • Julie Brethauer September 25, 2014 at 6:56 pm #

      Hi Lynn,
      Ben started the scd right after a big flare that caused the doctor to recommend Remicade. The doctor put him on Prednisone for a couple of months in order to begin calming the flare while doing the testing to prepare for Remicade. The symptoms had lessened greatly by the time he tapered off the steroids. He then continued the diet and started back on the highest dose of Lialda which had not previously worked, however in combination with it and the diet he began to improve more and more. I would say maybe it took about 3-4 months from the time he started to really realize the effects. No, no dairy or grains at all. Not even the yogurt they recommend. We bought a yogurt maker and never used it, because we were so suspicious of the dairy… a lady that knew Elaine Gotshall who wrote Breaking the Vicious Cycle had been continuing research with SCD and recommend not trying it since he has had a bit of dairy intolerance off on through out his life. He cooks all of his food by himself at school…chicken, hamburgers, tuna, talapia, veggies of all sorts, eggs, banana pancakes, nut breads, etc. We discussed his discussed his condition auth campus going and after getting doctors letter they provided him with special accommodations, so that he would be assured an apartment with a kitchen. The other guys live in the apartment, but two are on a meal plan and rarely eat there, so he does pretty well. We do order some snacky type things from Amazon like Simple Squares Nut Bars, George Delight Just Fruit Bars, Stretch Island All Natural Fruit Strips that he eats regularly and dune Paleo Wraps that are made from coconut that you can wrap Matt’s and such in like a burrito or taco

      • Julie Brethauer September 25, 2014 at 7:14 pm #

        Sorry for all the typos! I am typing from my phone and it doesn’t always cooperate! I accidentally sent the last message before I finished and had a chance to check for typos…I hope you can make some sense out of it! Was trying to think of what he’s added back…Not much…sauerkraut & nuts, I guess. He uses the SCD Buddy App to help him decide what he can or cannot eat. No alcohol…thank goodness! He is very serious about the diet and has heard a lot about how it can create bad flares. He is still on Lialda…his new doctor has recommended staying on it at this point. We are hoping that he will eventually be able to reduce the dosage or wean off of it entirely one day.

        • Julie Brethauer September 25, 2014 at 7:21 pm #

          Another post submitted early ;-) …lol! Just wanted to say that I hope and pray things start to take a turn for the better with your son soon. I know how challenging changing your diet can be..it is so hard for them at first…it takes a while to accept and adjust, but it is possible!…and it makes it all worthwhile when you get an amazing report from the doctor like we
          did! :-) Good luck! Let me know if you have any more questions!
          Julie

          • Lynn September 27, 2014 at 5:39 am #

            Thank you Julie for the encouragement. Everyone needs encouragement especially those with UC and their families and friends. A positive here is our son has learned so much about his body and how valuable health is, don’t think he will ever no matter the future ever take either for granted. We are working with a functional nutritionist and her team of professionals. They are wonderful with helping our son tweak what’s going on and why the symptoms and through foods and supplements and lifestyle are helping him to reach a point of remission very soon I hope. It will be three years in December that the symptoms appeared for my son. The cost of this team help doesn’t come cheap but they are truly angels and oh so helpful and won’t give up until he’s reached remission. Our son does have an appointment with a highly recommended GI doctor in two weeks. He does not want to go on any meds but says his patience is almost spent with the diet and not seeing an changes. Such a struggle everyday. He has days where he is really down and so am I. Was your son in college when he was flaring and not feeling well? My son is a junior and the mental stress when he walks out of his apartment just zaps his energy. I’m leaving for Italy in two weeks and my husband is left holding the responsibility. We have another child in the military so am going to stay with her. I really struggle with leaving but my husband says just go we will be fine. He knows as the main caregiver how mentally and physically demanding it can be and as a mom you want to fix it. Any help as how you dealt with the time during the healing and flares. Did your son have any anxiety or sad times? Thanks Julie.

  6. Emily September 17, 2014 at 8:48 am #

    Hi Christina!
    I also suffered through most of college with UC. I have a more mild case than yours, but your college is REQUIRED by the ADA to accommodate your disability. Have you approached your school’s disability services for help? With proper documentation, they can get you accommodations.

    For example, in college I was allowed to leave class whenever I wanted, no matter when, so that I could use the bathroom. I also got my absences excused, when I was too sick to go to class. I even took some of my exams in private rooms (partially for ADHD, but also so that I could use the bathroom.)

    The Disability Services people were awesome – when any of my professors weren’t accommodating, I had an “advocate” who would intervene for me.

  7. Patrick DeMars September 17, 2014 at 8:53 pm #

    Christina,

    First off… Don’t doubt your dreams.
    2nd… Never give up.
    3rd… take it from me i was hospital ridden for a month and 2 months home… due to my UC.
    4th… Remacade is known to work.
    5th… I’m allergic.
    6th… I’m on Humira… it’s an injection. I take it every two weeks.
    7th… being a early childhood studies teacher is possible. I am currently.
    8th… Great support and understanding is good to have be grateful.
    9th. Be grateful you’re not gay and with UC wanting to be on the receiving end of sexual intercourse. Very difficult.
    10th… I’m gluten and lactose intolerant.
    11th… Stress is a trigger for my flare ups most of all…
    Feel free to Add me on Facebook. I’d love to chat with you.

  8. Stephanie September 18, 2014 at 7:33 pm #

    Hey Christina-
    You’re story reminds me so much of my own! I am also from northeast PA and I went through a very bad flare during my senior year of high school which hospitalized me for 6 weeks until I was able to get it under control with various meds, transfusions, and I.V. nutrients. My doctors told me that as bad as I got with my first real ‘flare’ that it was inevitable that I would continue to have flares, and strongly recommended surgery. They encouraged me to wait until my body was healthier to have the surgery to have my colon removed so that my body would be able to heal faster– and ultimately so that I wouldn’t have to have a colostomy bag for the rest of my life. After my first surgery, I had my colostomy bag for roughly six weeks before having the reversal for the j-pouch.
    I am currently 35 and have had my j-pouch for about 17 years now and couldn’t be happier. I still have occasional flares when I consistently eat or drink foods I know I shouldn’t, but they are easily remedied by a course of Cipro. Otherwise, I take no medications whatsoever and live a very normal life!
    Obviously, I only know from my own personal experiences and had I also tried to keep pushing against the surgery option, I know I would have continued to have to stay heavily medicated every day just at an attempt to have a ‘normal’ life. The side effects of all the medications alone cause all new problems for your body that just adds to weakening your body even more. Trust me, I know you’re scared! It’s a huge thing to go through at such a young age!! Lean on your friends and family for support as they will be able to give you the strength and the courage to do what’s ultimately good for you!
    Please feel free to contact me if you need anymore info on local doctors or just have questions. Good luck girl– you’re not alone!

  9. k September 19, 2014 at 1:33 pm #

    Hi Christina,
    I was a decade older than you and through college and into a career when uc hit me. It was horrible, although not nearly as bad as what you have suffered.

    I changed doctors and on the second visit to my new doctor, when I was in what today would be called a bad flare, I was finally diagnosed with ulcerative colitis. I was immediately hospitalized. Two days later a surgeon came to my hospital bed and explained my condition and what might have to be done. The next morning the crisis came. He took out my colon that afternoon.

    That was in the 1970s. I have had an ileostomy for almost 40 years now. It gave me my life back. I still consider it a miracle. There have been some challenges over the years, but nothing like trying to live with uc.

    Please, with the help of your parents and boy friend, explore to understand the three surgical options – ileostomy, BCIR (rarely used), and Jpouch. This site, internet searches, and Youtube have good discussions. Talk to people who have them. Whatever you decide, I wish you the best. It is a horrible disease, with difficult decisions to be understood and made no matter what. Good luck.

  10. MarkFN September 21, 2014 at 5:54 pm #

    Christina, depending on how long you have been dating your boyfriend/how comfortable you are with him, why don’t you ask him to be your donor and do Fecal Transplant. I woukd assume you wouldn’t have to worry about any STDS or getting his stool tested if you are already in a relationship with him. Believe me, as thousands of others on this website can also attest, diet can only take you so far depending on the severity of the UC. I had pancolitis for about 4 years and have now been 100% symptom free on zero drugs/special diet/anything at all for about 1.5 years now. You have to reset your flora, plain and simple, it will never go away as long as you have an imbalance of bacteria.

    • Bev September 22, 2014 at 10:33 am #

      Never a truer word spoken! I believe the very same thing, Mark. Our flora HAS to be replenished…otherwise, we will continue to suffer.

      Great post…let’s hope the ‘medical community’ admits this and gets going on it!!

      Damn those awful meds that are prescribed for UC!! Damn them…lol

  11. Marq Rich
    Marq Richardson October 21, 2014 at 3:48 pm #

    hi christina, my name is marc and im a former uce’rer.. i know what it was like trying to go to college while dealing with uc. i had to drop a semester because of it. i finally went ahead and got the surgery and let me tell you, that was the best thing i ever done in my life.. its been 2 years since my surgery and i havent had any complications since… i eat what i want.. no more meds.. and i dont have to worry about wheres the nearest bathroom. i go to the bathroom at least 3 times a day.. morning, at lunch while at work and at night.. sometimes i awake in the middle of the night to go.. but for the most part i went back to normal.. i suggest you go ahead with the surgery if you want to be normal again. your gonna wish you been did it a long time ago. if you have any questions feel free to ask… p.s surgery IS the best logical thing to do if you ask me

    • Lynn October 21, 2014 at 10:55 pm #

      Hi Marc –

      Great to hear you are back to normal! Isn’t that what all UCers are striving for? My son is a junior in college and dealing with terrible UC symptoms. All he is doing is diet and it is not giving him any relief. His symptoms have been the same for almost three years now, its taken quite a toll on his body. Him being diagnosed with UC has consumed our entire family, we are all affected mostly because we can’t help him fix it. Not only emotionally but monetarily. Where did you have your surgery done? And I assume they did a test if you add UC or Crohns? Heard of people having the surgery and they had crohns and were still in bad shape as that surgery doesn’t fix Crohns.

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