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Crohn's Disease Forum » Your Story » Newly diagnosed, what happens next?


04-02-2017, 09:54 PM   #1
mjdowning1
 
Join Date: Apr 2017
Location: Plymouth, United Kingdom
Newly diagnosed, what happens next?

Hi I'm 19, I've just been told I have Crohns and I'm waiting for an appointment to see my doctor. I've been trying to educate myself but honestly it's just scaring me my colonoscopy was pretty awful and I'm wondering will I get over that pain as I assume I'm going to be having many more? I suffer with anxiety and I understand that stress and panicking are triggers! Basically any advice for this scared teen
04-02-2017, 10:29 PM   #2
ronroush7
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Hi. I am sorry you have this disease. I think you will feel better once your doctor finds the right combination of medicines. You might try something like a heating pad for the pain. You might keep a food diary to see what foods upset your stomach. Everyone here is supporting you.
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04-02-2017, 10:56 PM   #3
Jess_inToronto
 
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Hey MJ, I'm also recently diagnosed and suffering from anxiety. I'm finding it helpful talking to folks about what I'm feeling, even when my emotions seem stupid. Getting the weight off my chest has been a big help. Joining this community also took a load off my shoulders; seeing other people successfully living with this disease has been reassuring.

In terms of things you can do on your own, I've been using an app called Buddhify to try and manage stress. There are loads of similar mindfulness apps to help you focus without panicking, so take a look around and see what works for you.
04-02-2017, 10:59 PM   #4
mjdowning1
 
Join Date: Apr 2017
Location: Plymouth, United Kingdom
Hi. I am sorry you have this disease. I think you will feel better once your doctor finds the right combination of medicines. You might try something like a heating pad for the pain. You might keep a food diary to see what foods upset your stomach. Everyone here is supporting you.
Thank you, I've been doing a food diary for a while now as I thought my issues were to do with gluten/diary and other food related stuff so hopefully with the right medicines it'll help me work out some more triggers!

I'll add some heat pads to my shopping list
04-02-2017, 11:01 PM   #5
mjdowning1
 
Join Date: Apr 2017
Location: Plymouth, United Kingdom
Hey MJ, I'm also recently diagnosed and suffering from anxiety. I'm finding it helpful talking to folks about what I'm feeling, even when my emotions seem stupid. Getting the weight off my chest has been a big help. Joining this community also took a load off my shoulders; seeing other people successfully living with this disease has been reassuring.

In terms of things you can do on your own, I've been using an app called Buddhify to try and manage stress. There are loads of similar mindfulness apps to help you focus without panicking, so take a look around and see what works for you.
Thank you, I'll download the app. I do yoga and I've started looking into mindfulness as a friend recommended it. Luckily enough my mum and boyfriend are very supportive- I just don't want to be a burden and constantly moan to them because I'm feeling crappy!
04-02-2017, 11:15 PM   #6
Magnolia24
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Hi I'm 19, I've just been told I have Crohns and I'm waiting for an appointment to see my doctor. I've been trying to educate myself but honestly it's just scaring me my colonoscopy was pretty awful and I'm wondering will I get over that pain as I assume I'm going to be having many more? I suffer with anxiety and I understand that stress and panicking are triggers! Basically any advice for this scared teen

Do you mean that you are experiencing pain caused by the colonoscopy? You may want to call your doctor or the center where the colonoscopy was performed.

I totally understand the anxiety of this diagnosis. And my advice is to first allow yourself to feel your feelings about it. It's a shock, and there is a grieving process dealing with such a huge change. Trying to suppress the fear/anger/sadness, etc. that comes up can just cause more anxiety. Also, look for your resources that help you feel more relaxed - Asking questions on this forum, talking with friends and family, journaling, yoga, taking walks, etc. Yes, educating yourself is empowering, but too much at once can be overwhelming and just scary, especially when you wind up just reading about worst case scenarios. Look for information and stories of people doing well. Take breaks to walk away and focus on other things. Be patient with yourself when you need to rest. Don't give up on your goals and plans, even if you need to make adjustments to take care of your health.
Also, you mentioned noticing gluten and dairy are triggering for you..You may want to look into the Specific Carbohydrate Diet. It made a huge difference for me. scdlifestyle.com is really helpful.
Best wishes!
04-03-2017, 04:44 AM   #7
scottsma
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I agree with all the above posts.It is scarey and overwhelming but once you begin to understand your body more,it will become easier.Don't take notice of the horror stories.Most crohnies complete exams,hold down a job and support and raise a family so please don't think the worst.We have a "Young Adults" thread you might find helpful.Feel better soon.
04-03-2017, 05:07 AM   #8
CYY
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Hey MJ,

CYY here, a 16-turning-17-year-old diagnosed in December last year. Been suffering from IBD symptoms since I was 5.

We have a great support community here. You're definitely not alone. I'm sure most of us here would be more than willing to lend you a listening ear should you ever need it. Don't keep everything to yourself. It'll only add to your anxiety.

Oh, and if you haven't already done so, do check out the support groups that we have here. They're really helpful.

As a teen speaking to another teen, I guess the only thing I can help you with is how to deal with school? Lots of people would have other advice for you, and I don't want to tell you everything and leave nothing for the others to say :')

Someone else has actually asked for similar advice on this forum once, so I thought I'll take this opportunity to share what I've said to this other person. Basically, this is what I would say to any school-going teen that has been diagnosed with some form of IBD:

1) Adjust your expectations accordingly. With CD comes limitations on your life. Like restrictions on what food you can eat, skipping lessons constantly because of hospital visits, how much physical exertion you can handle, etc. You just need to accept and get used to the fact that there are some things that you were able to do before, but are unable to do now. I know it's easier said than done, but if you are able to pull this point off, you'd be a much happier person.

2) How to deal with people who don't understand. The answer is: putting yourself into others' shoes. When I was on EEN (I'm on EN now), I had to bring this special formulated milk to school. People were not used to seeing me drinking nothing but milk during recess, and I've gotten quite a few stares from people. Teachers often ask me why I'm constantly absent from school, and a teacher once asked me if CD was contagious. Sometimes, I feel that my parents don't understand how I'm feeling too, how it can be active at one moment and fatigued the next, how I can be happy at one moment and angry the next. Some of my friends think I'm pretending. All these insensitive and mean people. The list is endless. But, if you are able to think from their perspective, the fact that they know nothing about CD and the pain you're going through, then it doesn't make sense to blame them for their ignorance. It makes forgiveness so much easier.

3) Time management. With constant absenteeism from school, you're always playing a catchup game. I cannot stress how essential time management is. The hours that you feel well enough to do something is limited. When you have the energy, make use of every minute wisely. When I'm on the train on my way to hospital, I read my geography textbook. When I'm stuck in the hospital with nothing to do, I watch Youtube videos on a particular topic that is being covered in school. I admit, I do slack every now and then, but I often find that I've got to pay the price for that in an upcoming test or exam. If you can't read up in advance, then my suggestion is to at least not allow yourself to lag too much behind.

4) When consulting a doctor, come prepared with a list of questions you want to ask. Jot down (or at least keep in mind) whatever (new) symptoms have you been experiencing, regardless of how related to CD you think it might be. Keep track of all medication that you've taken. If you feel that a particular doctor is not doing you any good, get a second opinion, or even a third. But within limits, that is. Don't be afraid to Google things up, but take it with a pinch of salt. Basically, to sum this point up, what I'm trying to say is that you need to be an advocate for your own health.

5) Most importantly, stay positive. Crohn's may be lifelong, but it can be bad, or worse. It depends on the way you look at things. There'll always be a thousand and one things to worry about. Pain, bowel movements, medications, injections, tests, appointments, hospitalisations, surgery, school, you name it. I find that having a positive mindset makes a difference. This doesn't mean that you cannot feel bad at all. There will be days where you feel like crap, days when everything goes wrong for you, days when you find that you cannot cope with the cruelty, the unforgivingness, the unpredictability and the sudden escalation of this disease. It's okay to feel bad, it's okay to be angry, it's okay to be frustrated, and it's okay to cry. What matters in the end is that you need to be able to bounce back up. To feel that so long as you're making improvements, no matter how long it takes, you are still on your way to remission. To treasure every good day that you've got. To believe that every cloud has a silver lining, and that there's always light at the end of a tunnel, no matter dark a cloud may be, no matter how long a tunnel may be. It is important to look on the bright side of things, because it helps you cope with this disease better.

I wish you all the best for your appointment.

Stay strong, MJ. I'll always be here if you need me. We'll always be here if you need us

Cheers,
CYY
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Hi, I'm CYY! (✿◠‿◠)/
Age: 17
Diagnosed with: Crohn's Disease, Supraventricular Tachycardia, Chronic Asthma
Currently on: Methotrexate 20mg/week, Folic Acid 5mg, Atenolol 50mg, Modulen IBD (10 scoops), Ondansetron (PRN), Debridat 100mg (PRN), Anarex (PRN), Ventolin (PRN)
Previously on: Azathioprine 50mg, Propanolol 25mg, Seretide
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