Hello everyone!

[Wishes Count]

My name is Kate and I'm excited to have found this forum! I'm 22 years old and in my senior year at Penn State. I've had a long and complicated journey with IBD, first being diagnosed with UC at 13, and then having my diagnosis changed to CD at 19.

I guess I have moderate/severe CD. I have not been in remission since 2008, I have been on predisone my entire time in college. (since 2008) I cannot get below 7mg without getting sick. I have tried everything, or at least it seems like it.

I am currently taking predisone, Lialda, 6-MP, Humira (every-week), Allopurinol (which is normally used for gout, but we are using it to help me metabolize the 6-MP correctly). As a result of being on Predisone for so long I have high blood pressure (I needed to be hospitalized because it was 185/155) so now I take a beta blocker and water pill for that.

I missed half of my junior year of high school because I spent 21 days in the hospital. It was also over christmas so that made it even worse. The highlight was I got to eat green jello on christmas day, after not eating anything for over a week.

It makes me mad that I can't get better. The last time I actually was in remission I worked as a lifeguard at an outdoor waterpark, now being out in the heat makes me dizzy. I know that stress plays a huge role in my disease and I really really believe that I will not get better until I am finished with college. I think it is the constant change of classes, moving apartments, moving places over the summer for internships that is causing me to continuoulsy flare. I know change is always a part of life, but it seems like I can just get settled and have a routine I will be able to achieve remission.


Sorry that was long. If you took the time to read, Thank you!

 

[Grumbletum]

:rosette2: Hi there. It's very nice to meet you, but I'm sorry it's cos you came here cos you're ill. Sounds like you have been having a real battle going on with the disease(s). Good for you, though, for getting to where you are with college and everything. I hope like you say, things might ease up on the stress front when you've graduated. What are you studying and what would you like to do?

 

[Wishes Count]

I am double majoring in Advertising/PR and Sociology. I have two minors as well. One is Recreation, Park and Tourism Management and the other is Human Development and Family Studies. (I really like learning!)

I would really like to do creative advertising work at an Ad agency, but it is very competitive and I feel that I would need to attend a portfolio school first. I've been designing ads for our campus newspaper for 2 years so I have some experience. I also wouldn't mind doing Public Relations and I'm particularly interested in working in the travel/tourism field.

If advertising doesn't work out for me, I sometimes think about going to grad school and getting a masters in counseling, the majority of my Soc classes have been about families and marriage so I would be interested in becoming a family/marriage counselor.

 

[Angrybird]

Hello and welcome to the forum, I am sorry you are still struggling to feel well

Out of interest what symptoms to you continue to get? When was the last time the docs did any tests/scopes to see what is going on inside? Have any type of dietary changes been mentioned and if so what have you tried? Can you re-call what other meds you have been previously on?

AB
xx

 

[EthanPSU]

Hey Kate, I just graduated last may from Penn State! I loved the place, but it was not kind to my crohns ha.

I myself was really never in remission or good at all during college, like you said, the constant classes, moving, an social life made it hectic to get it under control. I'm currently just on Humira and it seems to be working well.

Anyways, I hope you get better soon!

 

[Wishes Count]

Hello and welcome to the forum, I am sorry you are still struggling to feel well

Out of interest what symptoms to you continue to get? When was the last time the docs did any tests/scopes to see what is going on inside? Have any type of dietary changes been mentioned and if so what have you tried? Can you re-call what other meds you have been previously on?

AB
xx

Whenever I try to taper off the Predisone or have some major life change (example I had to move to another state this summer for an internship) I have terrible diarrhea, stomach pain, nausea (but rarely vomiting) over all tiredness. I would say for the last 4 years I have been trying to get off the predisone by tapering 1 mg per month. The lowest I have ever gotten is 7.5 mg, then I get really sick and need to go back up to 20. I can go down by 5mg until I'm at 10 again.

My Doc has been waiting to do a scope because we have been checking my levels for 6MP. We sent some fancy blood test to Promethus labs in California and even though I was taking 100MG a day my levels were really low. So we started using Allopurinol to trick my body into metabolizing the 6MP, and have been doing this blood test every 3 months. Now he says my levels are good and we can do a scope. My last one was 2 years ago, and even though I was on 10 mg of pred, plus all that other medicine, and was having semi normal BMs I still had inflamation. I'm going to have a scope over winter break in Dec.

As for dietary changes, I haven't really tried any specific diet, I've done low residue and BRAT when I'm feeling really bad. I have food allergies to peanuts and soy so that complicates some things. To be honest I just avoid eating if I know I have to do something, like go to work.

In the past I have been on Asacol in the early stages of my diagnosis and was able to achieve remission with that and the predisone. Then I just started getting worse. We tried Remicade but I ended up getting Pneunomia so I had to stop getting the infusions. I didn't think Humira was working until I stopped taking it for a while and then felt worse.

My doc says I'm pretty much on everything they can give me and that they don't really have a lot of drugs for CD so they need to use what they have as best as they can. A few years ago I would have said,"oh they just need to find the right dosage/right combination" but now I feel like it should have been figured out by now.

 

[Wishes Count]

Hey Kate, I just graduated last may from Penn State! I loved the place, but it was not kind to my crohns ha.

I myself was really never in remission or good at all during college, like you said, the constant classes, moving, an social life made it hectic to get it under control. I'm currently just on Humira and it seems to be working well.

Anyways, I hope you get better soon!

Wow, small world huh? I really think being so hectic is why I can't achieve remission. It seems like everytime I start getting better something else is starting/ending and I get stressed about it. I know life will always be stressful and changing but hopefully once I graduate I can get a job, live in one place, and get into a routine.

I can't believe people can only take ONE drug, I've met a few other students who have CD that say the same thing. I feel like my dresser looks like a pharmacy! haha

 

[David]

Hi Kate and welcome!

I'm sorry you haven't been in remission for so long, that's tough

Have they ever tried you on enteral nutrition?

All my best to you!