Recently Diagnosed With Crohns

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brkln13
New Member


Date Joined Sep 2017
Total Posts : 1
   Posted 9/28/2017 8:17 PM (GMT -7)   
I am a 17 year old girl, who has just been diagnosed with crohns. I guess I don't really understand the disease, how it happened, why to me. I had a colonoscopy that determined the diagnoses, then started on prednisone and have been on it for more than 3 months. It's caused my face to break out horribly to the point where I don't really like to even leave the house. My GI started me on some type of medication that started with an M, I don't remember exactly. It made me extremely sick, was in the ER for several hours with a fever that lasted 4 days. This is when reality really sunk in for me. I know it was the medication that made me that sick and not the crohn's, but it was a huge slap in the face. I am now starting Humira, and the at home injections are even more or a reality check. I can't believe I have to deal with this for the rest of my life. I know so little about this disease that I don't know how to make myself better and get control of it. That's why I am here, on this site, posting. I want to gain control and understanding of Crohns. If anyone has any tips on how they came to turns with their diagnoses and coping skills they used to deal with the depression of it all, that would be extremely helpful. Also, ways that you personally learned what foods worked for you and what didn't. I am having a hard time controlling my diet. Pretty much, any advice you could possibly give would be extremely appreciated. thank you.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 439
   Posted 9/28/2017 8:31 PM (GMT -7)   
I was younger than you when I was diagnosed. I was the only one in my family to get it.
I got better and everyone told me that it was a mistake, that I was misdiagnosed, and so I spent too many years in denial, pretending I was fine.
There's no easy way through it, but you will get through it.
Just don't expect other people to understand you unless they're also in the sheeeeetttt.
Be kind, for everyone you meet is fighting a great battle. -Philo of Alexandria

Live as if you liked yourself, and it may happen. -Marge Piercey

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10139
   Posted 9/29/2017 9:51 AM (GMT -7)   
I'm sorry about your diagnosis. You've had a rough introduction which would make somebody twice your age depressed. I'm hoping that the Humira will put you in remission and you can get on with your pre-Crohn's life.

Don't fret too much about diet. There's a lot of shysters out there who claim you can heal Crohn's with diet. You can't. Just do the best you can and don't beat yourself up for eating the 'wrong' things. Eventually you'll find the diet which works best for you in minimising symptoms, but in the meantime you can't make the actual disease itself any better or worse.

As depressing as this may sound, Crohn's will eventually become your new 'normal'. If you're lucky that normal will be pretty close to your old life (if never exactly the same); if not, well, you will still adapt anyway, because people do. You will probably better appreciate the good times than people who have never known what it's like to be sick or ill for a prolonged period of time.

As to why the Crohn's happened, it just did. You drew the genetic short straw and were so prone to getting Crohn's when the conditions were right. Even if you had known you were genetically susceptible, there is little you could have done to have prevented it from happening.

The depression will get better. Don't give into it completely, but don't try to fight it too strenuously either: it's there for a reason. But if you think it's reached a point where you can't cope with life anymore (e.g. you're skipping classes or work, avoiding people, having suicidal thoughts, constantly numb or crying etc.), then go to your GP.

Finally, if you've got any sympathetic family members or friends, then do talk to them. You shouldn't have to face this all alone.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Trishke
New Member


Date Joined Apr 2014
Total Posts : 18
   Posted 9/29/2017 3:38 PM (GMT -7)   
I haven't posted in awhile, but saw your post and thought I'd lend some support. I was diagnosed late in life and have been through many meds over the last 4 years.
One has finally worked!!
It's called Simponi.

Humira is a great medicine, you may find it will be a game changer. I hope so. We have it much better than diabetics who must inject many times a DAY!!
Everything in moderation as far as diet. While you are having a "flare", simple, easy to digest is best, but once the meds start working you should be good to go on a regular diet.
Only time will tell what works best for your body. We are all different, the disease "acts " differently in all of us.
I've found it's a good thing to communicate, complain, vent , or ask advice on boards like this one.
It's good to have someone you can confide in too. You don't need to tell everyone, but a good friend who "knows" The whole mess is important!
Take care and know you are not alone.
Trishke

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1797
   Posted 9/29/2017 4:39 PM (GMT -7)   
The way you're feeling right now, (especially after being diagnosed at the age you're at right now), is very normal. Right now, it's almost like a state of shock having such a huge weight dropped on you.

The good news is, they've made tremendous advances in treating this disease, and in your lifetime, there will be many more.

Before diagnosis, Crohn's can get out of control, and make you feel pretty bad. Then the diagnosis hits, and it feels like you've been run over by a bus. Once the meds get working, and your symptoms lessen, you'll transition to a maintenance medication, (Humira), and you'll then feel a whole lot more normal.

Don't worry about the side effects from Prednisone that you're experiencing. They'll all resolve once you wean off. Usually, you're on a descending dosage for about 8 weeks, then there a half life for a couple of months. After that if will be out of your system.

The only other thing I want to tell you is, while the internet is a massive resource for anything, it can be filled with misinformation, and outdated information. Don't let it scare you. You've come to a fantastic forum here for guidance and advice. Try not to worry, things WILL get better. You WILL resume a very normal life. Keep asking questions here. There's a lot of really good people here with a lot of experience in dealing with this disease.

NancyG457
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/23/2017 9:14 AM (GMT -7)   
Hi there! My Son was diagnosed at age 11. He is now 25. As parents, we were deathly afraid of the biologic medications and the potential side effects. He basically was on Prednisone (way worse for you than biologics IMO) and Mercaptopurine (6MP). In hindsight, I wish we had started him much earlier on a biologic. He may not be in the current state (see below) he is in had we. Remicade gave him induced Lupus. Humira worked very well for over 6 years with almost no side effects we could visibly "see". His MD suggested switching him to Stelara calling it in short "a Miracle Drug". He just started it in August so it is too soon to really tell yet if it is working. Nonetheless, there is no cookie cutter treatment for Crohn's. Everyone reacts differently to the medications. If one doesn't work, try another. Same with diet. You will learn what you are sensitive to and what makes your symptoms worse. There are SO many more med options than when he was first diagnosed. His MD is also convinced there will be a cure in the next 5 years (fingers and toes crossed). Please seek help with your depression sooner rather than later. My Son refused to seek help until he went back to college and it hit him hard. Depression, Anxiety, PTSD, etc. Best of luck to you!
SON (now age 25) with Crohn's Disease since age 11
Total Proctolcolectomy with Ileostomy at age 19
Humira for 6 years
Stelara started 8/2017

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1018
   Posted 10/23/2017 11:52 AM (GMT -7)   
Best thing you can do is exactly what you are trying to do here- keep learning about it. You can't make yourself better on your own. Follow the directions of your doctors and get a second opinion if you don't feel confident in the treatment plan. It takes time to grieve over your life changes and a long time to adjust. It takes time to sort out the facts from myths on the internet so you must be careful. Look for websites like the CCFA, The Great Bowel Movement and Inflamed and Untamed. All are good resources. Be careful of anyone that suggest quick fixes and diets they can do more harm than good. I took 6mp which was probably the one you felt sick on. I did as well and only take half a dose along with remicade. Once the humira works you should be able to get off the prednisone and many of its effects should go away. I was on humira for about a year but developed problems with it and switched. It's part of life with the disease is also knowing that side effects happen. Not frequently but they happen and you deal with them as they come. I see life with crohns like a surfer. First you learn how not to drown, then how to go with the waves of life, then stand and really take control of things but this is a cycle and we all inevitably fall down every so often and have to start over. Find things you enjoy doing even when your not well that can feed your soul whether it is reading, writing, art or crafts. Spend some time investing in yourself so that you can weather the bad days. Not everyone will understand but you will find those that do and they are your real friends.

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 240
   Posted 10/23/2017 7:24 PM (GMT -7)   
My son was diagnosed at age 19 (2015) but had symptoms for over two years before he told his dad and me which would have put him at the age you are now. He was so overwhelmed and sad and was both angry and scared. He started on remicade immediately and although he had several complications (hospitalizations and eventual illeocecal surgery) I can say that today he is a new person. Yes, he has to watch what he eats (recently became a vegan because he thinks it will help keep him in remission), yes he goes to the bathroom more often and has diarrhea often but he basically has the life he had prior to feeling sick. I know every person's experience is different and that my son will most likely face more challenges but I am so grateful that he is in a deep remission and enjoying life again. BEST TO YOU!

Gutsycal
New Member


Date Joined Oct 2017
Total Posts : 15
   Posted 10/24/2017 7:28 AM (GMT -7)   
Hi there,
I'm so sorry you are going through this. I was diagnosed at age 15 and I remember the whole thing being very overwhelming and scary. I'm 22 now and have been in remission most of the time I've been diagnosed. It wasn't an easy ride to get there, many trials of medications but humira was what did the trick for me. It's normal to feel down and overwhelmed about this new diagnosis but just know you aren't alone, talk to your friends and family about it. I had a great support system and I think that honestly helps a ton. Since finding out I have crohns it has pursed me to become a nurse to help others going through chronic diseases. Ultimately it's an awful thing to be diagnosed with an illness that doesn't go away, but it doesn't define who you are. Don't worry, you will get through this.

BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 57
   Posted 10/27/2017 12:57 PM (GMT -7)   
My wife was diagnosed at age 15 in 1989. She is now 43 years old and still dealing with it. Ups and downs, but I wanted to tell you this.

We met each other in 1997. We were married in 2000. She gave birth to our first daughter in 2002 and our second daughter in 2005. They are now a healthy 15 and 12 year old.

Just because you have this disease doesn't mean you can't live a wonderful life. Just take one day at a time, deal with what you need to deal with, and move forward each day.

My wife was on Humira for 10 years symptom free. She recently had some problems and is transitioning to Stelara. My wife and I look at fighting Crohn's as buying time. Humira will buy you time until the next drug is released. The next drug will get you to the next drug.

There is no cure, but maybe one day. And you can't experience that cure unless you keep up the fight. My wife is living a wonderful life...a very successful business woman, wonderful mother, great wife.

She is facing surgery probably in November 2017 for another stricture. It won't slow her down. She'll get it fixed and keep living life. She's good at it!

morgandrew
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/2/2017 7:22 AM (GMT -7)   
I was diagnosed the summer before HS so I feel your pain (now 31)

I would stay away from alcohol and coffee if you can - for me those two things were the worst

I have been on Humira for 8 years 1 injection per week and it has worked very well thus far

Its a tough road and it wont be easy but just know you have support and the doctor will figure out what works best for you - not sure you need to be taking steroids AND humira - once it begins to work it should work (it did for me) without the assistance of other drugs

Feel free to ask any questions as I know it sucks being so young and watching your friends live what you perceive to be a care free lifestyle

Good luck!
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