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Crohn's Disease Forum » Your Story » 22 and I don't know what to do


11-09-2015, 10:01 PM   #1
HannahRenee19
 
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Location: Eugene, Oregon
22 and I don't know what to do

Hello everyone!
I have been diagnosed with Crohn's disease and acid reflux for a year and a half. I've had symptoms for roughly 5 years. I've tried Pentasa, Lialda and a corticosteroid. My last checkup with my Dr. we discussed biologics because I have had continued pain and worsening symptoms. As a 22 year old college student that works as well, what should I expect if that's the next course of action? Also, I believe stress is a major contributing factor, but I can't quit school or work. Has anyone had to deal with a similar situation and have any tips for managing while maintaining a busy life?
Thank you!
11-09-2015, 10:38 PM   #2
Clash
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My son was 15 when dxed but is 19 now. He's in college and works 30+ hours. He is on the biologic Humira as well as methotrexate injections. He handles both meds well although he doesn't like the pain of the humira shot. He was previously on Remicade infusions which he loved but that was up until senior year of hs. Humira's easy as it is self injection whereas with remicade you have to go for the infusion which can mean missing work or class at times.

Either way make sure you go through your disability office at college and apply for accomadations for your CD. The can be great at helping you navigate through flares and mediate with professors.

My son has a number of accomadations for both CD and JSpA related to IBD (an arthritis condition that sometimes comes with CD)

The CCFA has a great template to look at for accomadations with 504s (high school) but they can give you some ideas going forward with the Office of Disability at the college.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-09-2015, 11:58 PM   #3
Cherrylips77
 
Join Date: Nov 2015
It's sad that u are only 22 and have Crohns. My Aunty was diagnosed while pregnant and had a safe delivery and then had bowel operations. I mean she had both removed and uses a bag but then went on to have another child and she seems to be doing fine. She complains of feeling bloated but she is mostly happy
11-10-2015, 03:53 AM   #4
MirrorBride
 
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Welcome! I'm 22 as well, and was diagnosed under a year ago.

A lot of GI doctors recommend starting with biologics now, hitting the disease hard from the start. I'm on Humira, and it helped my symptoms for a few months. I never quite got to remission, though, and am currently flaring again...waiting for news on my next course of action!

Biologics are great. I haven't noticed any side effects from my Humira injections, other than some injection site itching every now and then. It had definitely helped me improve from where I was before diagnosis.

Anyway, if you need a fellow 22 year old to chat with, let me know! I know it sucks. I was diagnosed last January, right at the start of my last semester of my Senior year of Undergrad.
__________________
23 years old
Diagnosed CD Dec 31, 2014
Current Meds: Entyvio (soon), 75 mg of 6mp, Prednisone taper
Past Meds: Budesonide, Humira, Remicade
Others: Calcium & Vitamin D, Multi
Unrelated to CD: Zoloft, Zyrtec, Junel

11-12-2015, 01:23 AM   #5
POTTYTIME!
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I have been on Humira for a year or so. I also take pentasa. The Humira kelp me from having intestine removed in the past but now having trouble. Having numbness and tingling in my left hand. Also have abnormal liver function due to humira. But they drill all the side effects into your brain before you ever start the medicine. Something you have to weigh is the RISK/REWARDS. Praying the best days comes your way.
11-12-2015, 03:50 PM   #6
FunkyBob
 
Join Date: Nov 2015
Location: United Kingdom
Best of luck, I am of the thinking that stress makes things worse as well but it's tough to avoid in this world hey, I went back to work for 2 days about 3 weeks ago as I was feeling a bit better and by late morning on the first day I was passing blood again, not good!

And go Ducks! I was fortunate enough to be in Oregon late summer 2014 and managed to see Mariota and the Ducks beat Michigan State at Autzen, good times
11-12-2015, 10:38 PM   #7
Lady Organic
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Hi Hannah,

I was diagnosed at your age too. We have choice over our lifestyle. I made a crucial decision at diagnosis because I knew stress was part of my problem. I finished my degree and instead of continuing further up as planned for masters, I decided to explore another work field, more ''fun'' and where stress was at minimum. now 13-14 years later, Im reintegrating my original work field and I know what I want and dont want in this work field. I have grown to know what is good and what is not good for me and to find the perfect schedule and work environnement where stress is at minimum. Even if that means a much lower paycheck, I dont care, what is most important are both my psychological and physical health for me. Decrease your course load an take an extra year to finish your degree if possible. Under constant stress, its more difficult for the body to heal. wishing you well.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
11-13-2015, 01:54 PM   #8
FrozenGirl
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Welcome! I am 20, diagnosed shortly after 18. Biologics are totally manageable with college you just need to keep it in your plans. There is lots of self injections that take no time off school. If you end up with an infusion it takes planning but is doable. Some clinics offer evening and weekend appointments. Otherwise maybe plan for a day where you are done early. So say on Mondays make your schedule so you are done at noon and can go to an appointment without missing class.

I also agree with registering with your schools disability office. My offices gives me a letter with. List of accommodations. One of these is a mention of due to my illness I may miss class at times. Even if classes with mandatory or grades attendance with this letter my profs have all been willing to work with me.
__________________
Dx: Ulcerative Colitis, Nov 2013
Currently on:
Mezavant 4.8g
Vitamin D 1000iu
Calcium
Tecta 40mg
Remicade: 600mg, every 4 weeks
Methotrexate: 15 mg (injection)
11-22-2015, 10:12 AM   #9
David
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Welcome to the community! I agree that biologics will likely be the way forward for you.

All my best to you!
11-23-2015, 10:48 AM   #10
Kancer
 
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Before going for the heavy drugs, I would heavily suggest that you try the low profile drugs for a while. Again, it is my opinion considering I have had some good experience. I was diagnosed at 16 and was prescribed Pentasa. Considering I didn't know the severity of Crohn's, I didn't take any sort of drugs till 19 despite having them at home. Every 3 months, I would go in for a check-up and my blood work was normal. After getting into university, things worsened and I was on corticosteroid for about 5 months.

The doctor told me to start taking methotrexate however I refuse to do so. I am back on Pentasa only and I am not doing bad. Everyone's different, so I would highly recommend you to go with low-profile drugs a bit longer (Given your pain/condition is managable). Now and then, I have pain but I just handle it.
11-23-2015, 12:11 PM   #11
CrohnsChicago
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Tagging Afidz who is in her 20s and has experience with biologics, crohn's symptoms and managing school/work.
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

11-23-2015, 12:20 PM   #12
my little penguin
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DS was dx at age 7 and started biologics at age 8
He is currently on humira every week at age 12.
With biologics he can do what he wants
Manage school , music and sports

Humira travels well
They will ship it next day anywhere in the U.S. At least

Good luck
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DS - -Crohn's -Stelara
11-23-2015, 05:52 PM   #13
David
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Kancer, "Doing ok" isn't good enough with Crohn's. Yes, Pentasa can control the inflammation on a topical level, but you often still get deeper chronic inflammation which leads to strictures over time. And that's when the real problems start.

Anyone with Crohn's needs to have a goal of deep remission. Nothing less.
11-23-2015, 09:14 PM   #14
afidz
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Hello
I literally just posted a similar question to yours on yesterday. Read through this, maybe you can get some ideas for your own situation http://www.crohnsforum.com/showthrea...682#post901682

As for what to expect being on biologics, it really is different for everyone. I am starting my 3rd biologic tomorrow after Remicade and Humira failed. In my own experience, being on biologics was life changing. I can't even really explain how great I felt while they worked. I felt like a normal human being. No joint pain, no gut problems, and as a result, no depression.

I am trying to balance full time school, full time work, and full time sick. I can tell you that I am absolutely exhausted, as you will read in that thread. But to be honest, I like the business and the satisfaction I have at the end of the day that I am accomplishing something in my life for the first time since I was dx at 18. From what I have learned from people on here and in my own experience, LISTEN to your body. My finace has had to remind me that its okay to go to bed at 7 if I'm tired. I obviously need the rest.
Hope this gives you some insight, feel free to pm me if you want to chat
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
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