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Hi Everyone, 

I was diagnosed with severe chronic Ulcerative Colitis last May and decided to share my experiences this last year and how IBD has changed my life just to talk about it and hopefully talk to some other people who have experienced the same thing. Everyone in my life tries so hard to help, but with none of them having the same illness, its hard for them to understand all the time.

I'm 22 and attend college at a four year university! I was so excited to transfer from my two year technical college into the bigger university. But last April, I started getting intense cramping, had to use the bathroom multiple times a day. I had to go to the doctor when I started bleeding every time I went. It was terrifying to see that water go pink and the doctors trying so many tests and everything coming back negative. Of course my biggest fear was cancer, but fortunately that very quickly was crossed off the list of things of possible diagnoises. After a month of tests, I was scheduled to get a colonoscopy which wasn't nearly as bad as I thought it would be! Besides the stuff I had to drink, that stuff was rough. As soon as the test was done and I woke up in the hospital bed, the doctor said the inflammation so severe that it was clearly UC. 

I have always been extremely dedicated to school. I strive to get the best grades, study as hard as I can, read every reading, write every paper and so on. I'm the person who pours everything I have into my education. This last year, UC has made that so hard to continue. I get tired so easily, I struggle to focus and with the different medications I have been on, emotionally I just couldn't get myself as invested as I have always been. It's too hard to have a job and be in school so I currently am just a full time student. 

My flare up has continued since I was first diagnosed, sometimes being tolerable and other times being absolutely terrible with the cramping, fatigue and bathroom visits. The first medication I was put on made me break out into a full body rash that was absolutely terrible! It was so itchy and burned, the worst was probably when it was in between my toes. I went to urgent care twice before a doctor recognized it as being a sulfa allergy.

My second medication helped a little, but it wasn't enough for how severe my symptoms were. So I was put on a stereoid. This actually helped more but it made me feel really emotional, not myself at all. I gained weight and was feeling really down. But once I stopped taking that, my symptoms came right back and I was put on an additional medication on top of the ones I was already taking.

So currently I am taking four different medications to try and get the symptoms under control. Some days are good and some I still have cramps, bleeding, and having to go multiple times a day. It hasn't been easy but I'm not giving up hope that someday I'll be able to feel 100% myself again! I try to maintain my hobbies on top of school (reading, writing, photography, etc.) but that definitely has not been easy just because by the time I finish all my homework and classes, I am absolutely exhausted. 

My friends and family try really hard to support me the best they can. But, being over 21 in college makes it hard for them to understand that I can't drink without feeling extremely sick afterwards. It's hard for them to get that even the littler things can make me so much more tired than they used to. And it's always awkward to pull out the 8 pills I have to take with dinner every night when people who don't know about my condition are around. But seeing my specialist regularly has helped so much. She listens to all my concerns about new medications and is very supportive when I just need to cry my eyes out with how frustrating it can all be. 

Reply posted for WriterAtHeart.

Reply posted for KRiegel.

Hi KRiegel, 

Thanks for responding! It’s so nice to hear from someone connecting with the same problems as me since like you none of the people I’m close with have had IBD. 

Ugh, prednisone is so helpful but the side effects just are terrible! Although for how much it helped with the symptoms it was something I was glad I tried. 

I’ve been so nervous to do things like camping and such where I’m not going to be right by a bathroom all the time! I’m taking a family trip to Puerto Rico this summer and they want to hike the rainforest but I’m slightly terrified of being no where near a bathroom. But I’m glad that all worked out for you, it makes me a little less scared about having to tackle them myself hahaha. 

As for the alcohol suggestion that’s such a good idea I can’t believe I haven’t thought of it before! But yeah it was interesting because it wasn’t until a few months after turning 21 where I started to feel really sick after going out with my friends (despite only having a couple drinks) and then suddenly the bleeding started so I keep my distance from alcohol. But you make a good point with our livers already being so overworked with the medicine! 

Thank you again for responding :) 

Reply posted for WriterAtHeart.

Hey WriterAtHeart!

I defintiely connected with your story, so first I just wanted to say thanks for sharing! I know it can be difficult sometimes to talk about. I am 20 with mild to moderate UC (although Ive had it a little longer than a year.) I attend a 4 year university as well. I'm the only one in my family and actually the only person I know personally with UC or Crohn's. I'm on a biologic now, Humira, so i don't really take pills anymore, but until last august I was popping anywhere between 4-8 pills a day, including prednisone at times. Similarly the Prednisone made me gain a lot of weight and made me super emotional, but it always helped. 

I would definitely consider myself dedicated to my schooling. I think you and I have very similar goals when it comes to grades and our education. Typically I'm able to control my symtpoms enough to where I can go to class and work without a problem but recently I've had to skip classes cause I just feel so awful. Last semester, I spent a lot of time camping and being off campus for my minor, often in places where there weren't bathrooms, or there were only pit toilets. It was by far the hardest thing I'ver ever done during a flare. But I survived and I believe it when I say that you can too. you just have to take it one day at a time :) control what you are able to and dont sweat what you can't, because stress always makes UC worse. 

As for the medications, I know it can be weird pulling out a thing of pills before dinner or in front of friends but those things are important, theyre maybe saving your life. So if your friends are confused or curious, don't be afraid to share, as much as you want to share or they want to hear. And I can't really speak to drinking much cause i'm not 21 yet, but my meds put a lot of stress on my liver, and I think a lot of the meds we can take for UC do, too, so if that's the case and you don't think your friends will understand, just tell them that you can't mix your meds with alcohol. 

Thanks again for sharing your story and for giving others, like me, a reason to share ours and our advice. I've lived with this disease a long time, heck, i've even thrived at times, so I know you can get to that point too :) you and your body are stronger than you think!

Reply posted for WriterAtHeart.

(My space limit ran out, sorry guys!) 

Hopefully you've connected to something I've written, I would love to hear your stories and experiences! I also would love to hear about how you guys manage your own IBD and being in college/starting a career and what not! 

Thanks for reading!