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Fairly New UC Diagnosis


Fri, October 07, 2016 11:42 AM

My name is Sarah and I'm 21 years old. I was recently diagnosed with UC (April to be exact). After taking prednisone, my GI doctor has recommended that I begin taking Remicade and Imuran. I was wondering if anyone has had experiences with these medications and what they thought of taking this step? In addition, I've realized that it's extremely difficult for friends to understand what I've been going through, so I was wondering if there's anyone close to my age that would be willing to talk?

 

FPO sarah mercer
Joined Oct 7, 2016

Tue, January 31, 2017 8:55 AM

 Reply posted for lnbe98.

Be careful of being on Prednisone it messed with son's head.  He felt trapped on it and unable to speak.

FPO momebac
Joined Dec 14, 2015

Mon, November 07, 2016 7:32 PM

 Reply posted for sarah mercer.

Hi Sarah,
I have been diagnosed with UC for 11 years now and I'm only 18 so I have gotten really used to talking to my friends about UC. Usually when I talk to them about it they're like oh my god are you ok and once I tell them what exactly what it is they are really great and supportive of me when I need it. I have gone to so many conferences where they're so surprised that I was diagnosed so young. Since I pretty much grew up with UC I have become a spokesperson for my local hospital for people my age going through diagnosis. If you ever have any questions or if you really want to just talk about what is going on, I am here. I grew up thinking that this was something I should hide from people, but it is apart of us now and makes us who we are. It will get better, I am currently in the third year of no symptoms of a flare up, and it will get easier to handle. Hope this helps a bit and if you ever need to talk, let me know. 

FPO hsanchez2
Joined Nov 7, 2016

Fri, November 04, 2016 9:49 PM

 Reply posted for sarah mercer.

omg im so sorry i dont know why that posted three times 

FPO lnbe98
Joined Nov 4, 2016

Fri, November 04, 2016 9:43 PM

Hey Sarah :) I'm Lauryn and I'm almost 19. I was just diagnosed in early July of this year. I had the most horrific summer of my life on Prednisone and various different brands of mesalamines. I was throwing up constantly, going to the bathroom 20+ times a day, losing weight rapidly, having terrible joint pain, and I ended up hospitalized and having to have multiple blood transfusions because I had lost so much blood. My GI had hoped to try all the "easier" options before starting me on a biologic, but by August when I was hospitalized it was pretty clear that biologics were my last resort (besides surgery of course).

I don't have any experience with Imuran, so I can't speak on that. I know everyone reacts differently to every medication, but in my experience Remicade has been a lifesaver. Within two hours of my first infusion in the hospital I felt exponentially better, and I was completely back to normal within about a week. So far it has kept me in a really good place. 

Back in July I was completely opposed to the idea of biologics, but that's mostly because I focused too much on the potential side effects. What I've learned since starting is that these side effects are EXTREMELY rare and there's really no use dwelling on them because they will almost definitely never affect you at all.

Having to go to the hospital/infusion center every 6 weeks or so seems kind of tedious, but I honestly like having the day off of work to get to sit in a big comfy chair with my blanket and laptop and watch movies for a few hours :) 

I'm also looking for more people who understand my situation to talk to and I'm definitely open to talking to anyone at all! 

Good luck and keep us updated! 

FPO lnbe98
Joined Nov 4, 2016

Fri, November 04, 2016 9:43 PM

Hey Sarah :) I'm Lauryn and I'm almost 19. I was just diagnosed in early July of this year. I had the most horrific summer of my life on Prednisone and various different brands of mesalamines. I was throwing up constantly, going to the bathroom 20+ times a day, losing weight rapidly, having terrible joint pain, and I ended up hospitalized and having to have multiple blood transfusions because I had lost so much blood. My GI had hoped to try all the "easier" options before starting me on a biologic, but by August when I was hospitalized it was pretty clear that biologics were my last resort (besides surgery of course).

I don't have any experience with Imuran, so I can't speak on that. I know everyone reacts differently to every medication, but in my experience Remicade has been a lifesaver. Within two hours of my first infusion in the hospital I felt exponentially better, and I was completely back to normal within about a week. So far it has kept me in a really good place. 

Back in July I was completely opposed to the idea of biologics, but that's mostly because I focused too much on the potential side effects. What I've learned since starting is that these side effects are EXTREMELY rare and there's really no use dwelling on them because they will almost definitely never affect you at all.

Having to go to the hospital/infusion center every 6 weeks or so seems kind of tedious, but I honestly like having the day off of work to get to sit in a big comfy chair with my blanket and laptop and watch movies for a few hours :) 

I'm also looking for more people who understand my situation to talk to and I'm definitely open to talking to anyone at all! 

Good luck and keep us updated! 

FPO lnbe98
Joined Nov 4, 2016

Fri, November 04, 2016 9:43 PM

Hey Sarah :) I'm Lauryn and I'm almost 19. I was just diagnosed in early July of this year. I had the most horrific summer of my life on Prednisone and various different brands of mesalamines. I was throwing up constantly, going to the bathroom 20+ times a day, losing weight rapidly, having terrible joint pain, and I ended up hospitalized and having to have multiple blood transfusions because I had lost so much blood. My GI had hoped to try all the "easier" options before starting me on a biologic, but by August when I was hospitalized it was pretty clear that biologics were my last resort (besides surgery of course).

I don't have any experience with Imuran, so I can't speak on that. I know everyone reacts differently to every medication, but in my experience Remicade has been a lifesaver. Within two hours of my first infusion in the hospital I felt exponentially better, and I was completely back to normal within about a week. So far it has kept me in a really good place. 

Back in July I was completely opposed to the idea of biologics, but that's mostly because I focused too much on the potential side effects. What I've learned since starting is that these side effects are EXTREMELY rare and there's really no use dwelling on them because they will almost definitely never affect you at all.

Having to go to the hospital/infusion center every 6 weeks or so seems kind of tedious, but I honestly like having the day off of work to get to sit in a big comfy chair with my blanket and laptop and watch movies for a few hours :) 

I'm also looking for more people who understand my situation to talk to and I'm definitely open to talking to anyone at all! 

Good luck and keep us updated! 

FPO lnbe98
Joined Nov 4, 2016

Thu, October 20, 2016 10:03 PM

 Reply posted for danielleg414.

Hey y'all! I have been diagnosed with UC since I was in 9th grade so i guess about 2009, bout 14 years of age. I am now 23 so it has been a while having it now. What are some of your all symptoms of UC? Mine is joint problems and something skin conditions. I am currently taking Apriso, and it has helped me so much! My junior year of high school i didnt go for a couple months due to no medications working so i had lost about 40 pounds. Doctor was horrible and wouldnt listen. But now i have a great doctor and am doing much better besides a little flare up a couple weeks ago. If anyone has any questions feel free to write back, i will help in any way possible. :)

FPO bshoemaker51
Joined Oct 20, 2016

Fri, October 14, 2016 8:40 PM

 Reply posted for sofiad.

Hi Sofia and Sarah, My name is Danielle, and I was diagnosed at 17 years old in 2011. I'm now 22, and after trying all of the medications y'all mentioned Humira passed FDA approval for UC patients, and that's been working great for me. It is hard to criticize each medication, because I know some people who are well on remicade and others who another course worked. I had a particularly aggressive disease bout and if I had to say how I felt about remicade, Imuran and asacol, it might be totally different for you. Remicade, the process and everything, wasn't too bad. Sofia, if you do start taking this, I hope it works for you. A once-a-month regimen might not be too hard to deal with if your college is near a hospital. Two hours and you're good for a month. For me, Imuran really sucked. I had a grocery list of side effects, and my doctor didn't believe me. Not a good experience, but overall the drug is pretty intense. I know some that swear by it though. I have been on Humira for four years, and it has helped me immensely. Injecting myself every two weeks isn't fun, but way better than having to avoid the frozen section while grocery shopping (cold was a trigger for me) and worrying about where the nearest bathroom is. I hope you both are doing ok, and I would love to chat if you ever want to discuss life with IBD. I came here looking for young adults to talk to. I'm going into my senior year of college, and am feeling more symptoms lately. My doctor has always said 7-8 years after diagnosis is when they see the most instance of colon cancer, and I guess I'm getting really close to that mark. Peace, Danielle dgille414@yahoo.com

FPO danielleg414
Joined Oct 14, 2016

Tue, October 11, 2016 1:35 PM

 Reply posted for sarah mercer.

Hi Sarah,

I'm 18 and was diagnosed just 4 months ago with ulcerative colitis. I was put on Prednisone (then tapered off) and Asacol in the hospital, but my insurance wouldn't cover Asacol, so I was switched to 2 Lialda in the morning only. The longest I have managed to go symptom free off Prednisone is 3 weeks so far.  Not good.  I started college in mid-August and have had two flares AND C-Diff somehow since then even though my Lialda was doubled and Uceris was added. So, at this point, I am dealing with the 3nd flare (2nd since since my 1st flare/diagnosis). The 4 Lialda in the morning and 1 Uceris at night do not appear to be working. At this point, I am also being told that our next step is either Humira or Remicade, but my doctor believes in adding Methotrexate to increase the likelihood of it working. My mom has been doing a lot of research. We don't like what we read especially about Methotrexate, so we are still making a decision. Plus, I am concerned about the infusions for Remicade requiring me to miss class. Were you ever placed on any of the lower meds first like Asacol, Lialda, Pentasa, etc?

Unfortunately, I may be forced to leave school and after this semester in order to get help with better controlling this. My grades are strong, bu tI am in a dorm which makes it all the more difficult, and if I go on Remicade or Humira it may be best to deal with that stuff from home. I am in the same boat about friends. I told a few close friends but am uncomfortable telling anyone else. They are focused on adjusting to college life and socializing, and of course don't have any real idea what I'm dealing with. I mean, I look fine on the outside, so I often feel like they don't believe me. So, it's good to talk with someone who does get it for once.

Sofia

FPO sofiad
Joined Oct 11, 2016

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