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Crohn's Disease Forum » Your Story » Recently diagnosised and scared


04-28-2014, 05:37 PM   #1
salrenee
 
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Recently diagnosised and scared

Hi,

I'm not really sure how to start this, and honestly sometimes I don't even know how I got here. This has all happened so fast.

In December I was admitted into the hospital after a horrible night of extreme vomiting. After 5 days of uncertainty I was transferred to a different hospital and within 24 hours I was being taken into surgery. The surgeon took out a part of my small intestine due to a blockage that he said was extremely dangerous. 24 staples and a week later I was finally sent home. I returned to my college and saw a GI doctor here as a follow up. After blood work and discussion of what happened when I was in the hospital he diagnosed me with Crohn's Disease. For me, I was in shock. How could I have a chronic disease at 20 years old? I went for a second opinion. To my dismay she told me the same thing as the other doctor did. Crohn's. I have to be scoped from both ends and have another CT scan.
This was about 2 weeks ago now, and ever since I have had this heavy feeling on my chest. I'm scared, anxious, nervous, angry, frustrated....everything. I find myself getting jealous of my friends for not being sick. I'm so grateful that at this point my symptoms are very minimal. I will have occasional diarrhea, cramping, and fatigue. What I am so scared of is that it is one day just going to be worse. I read stories from people on here and other websites, and read about the pain and frustration and I am so scared that one day I will have a bag or be unable to get my Master's Degree or work as a Speech Language Pathologist because of this disease...I just really need support from people who understand the disease. My parents try, but they don't understand as much...I don't know.

Salina
04-28-2014, 05:43 PM   #2
theOcean
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I'm sorry to hear that this happened to you so suddenly, but I'm also relieved to know you got treated so quickly!

It seems like people are commonly diagnosed with IBD like Crohn's around their late-teens to early-twenties, so that isn't actually as unusual as you think. I was 19 when I was diagnosed. And while it is chronic, it's treatable! So as long as you're treated effectively, you can feel like you don't have an illness. That's how it is for me now that I'm in remission.

You've already gone through one of the more severe manifestations of Crohn's, so now all that's left is to make sure you get proper treatment so it won't happen again! Which medications have you been put on? You can check in with this forum regularly, too, if you don't feel like they're working and we can advise you on if you need to wait or if you need to get in contact with your GI.

You'll be able to get your degree, don't you worry! Maybe your illness might slow you down, but you'll be able to get it. I'm still working my way through college at 22, and I'm doing things at a slower pace because it's what's best for my physical and mental health. If your illness is under control, you could manage far more than that.

You'll be okay, I promise.
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Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
04-28-2014, 05:50 PM   #3
salrenee
 
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Thank you for your reassuring response. It's nice to know that I am not alone in this. Currently, I am not on medication, and I haven't been since my surgery in December. I take iron supplements for my anemia, but that is it...the doctor told me I can't start medication until they do the scopes and ct, but those won't be completed until mid-june. Which is another thing that makes me uneasy, because what if something happens before then? I get really nervous and anxious about it.
04-28-2014, 05:51 PM   #4
valleysangel92
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Hello, and welcome to the forum

I understand your fear, it's completely normal to feel freaked out by this, especially since it's happened so suddenly.

The key thing is that now that you have been diagnosed, they can start to get a treatment plan worked out for you. This might take a little bit of trial and error, but it should be worth it.

I know it doesn't seem like it now, but you can live a pretty much normal life, the important thing to remember is that there are more stories of people suffering because those are the ones that need help. It's far more common for those having a hard time to seek assistance and support than for those doing well to report about it, they are often busy making the most of being well .

Are you currently taking any medications? Or is it a case of having the scopes and then medicating?

I can also understand the feeling of jealousy, but you will be able have fun again, it just might be in a slightly different way.

Yes crohns is tricky, you have to take the time to find the right treatment for you, and it will flare up when you least expect it to, so you do need to take it seriously. However, it is not the end of your life. You can get on top of this, even if it takes time. It is possible to finish your education and it is possible to get a good job, you just may have to fight for it a little more.

We all understand here and we will do our best to support you
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-28-2014, 05:58 PM   #5
theOcean
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Thank you for your reassuring response. It's nice to know that I am not alone in this. Currently, I am not on medication, and I haven't been since my surgery in December. I take iron supplements for my anemia, but that is it...the doctor told me I can't start medication until they do the scopes and ct, but those won't be completed until mid-june. Which is another thing that makes me uneasy, because what if something happens before then? I get really nervous and anxious about it.
That would worry me, too. I thought because of the obstruction they already knew you had Crohn's, though? Or is the scope just to confirm? Because I think in the meantime, you should ask them about at least being on a steroid (entocort or prednisone) or a 5-ASA (Pentasa, Asacol) to keep you in maintenance. 5-ASAs are also a much milder form of treatment to help with inflammation, so maybe if you ask about those your GI won't say no?
04-28-2014, 08:11 PM   #6
DJW
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Hi and welcome. I don't have much to add. With a diagnosis treatment can start. It's a lot to take in. Give yourself lots of grace and take it a day at a time. Don't give up on your dreams.
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04-30-2014, 04:32 PM   #7
David
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Greetings and welcome to the community. My best advice is to educate yourself. Use this community and the QUALITY online resources to empower yourself so you can be your own advocate. Become as close to an expert in Crohn's disease as you can.

We're here for you.
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05-02-2014, 10:34 AM   #8
salrenee
 
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Thank you so much to everyone for being so positive and helpful! I am definitely going to be turning to this forum for help, advice, and reassurance!
05-05-2014, 08:31 AM   #9
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So sorry to hear about your anxiety due to crohns. I was diagnosed at 16 after doctors telling my mother for 2 years I had bullemia/anorexia and that I was basically a head case. I am now 45 graduated from college had a child and I have lived a normal but sometimes painful life. It's sad to say that you actually get used to it. You map out washrooms schedule your menu around your activities if I was staying home I will indulge in the bad foods if I will be out I ensure that I eat things that will not cause the excruciating pain. I have tried every drug available best one was humira it is actually a miracle drug. But I had to stop due to the cost over $3,000 a month. It gets better I can promise you that I have also had 4 bowel surgeries and after each one it is like being born again. I wish you the best it is a scary diagnosis but you will learn to cope
05-05-2014, 10:34 AM   #10
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I'm sorry to hear about your anxiety. Your age is in the "usual" range for a diagnosis. I was diagnosed at 19 as well. I wrote about my experience here: http://www.crohnsforum.com/showthread.php?p=766414 .

I've had to make a few adjustments in life, but for now I'm able to lead a pretty normal life. I skiied 5 days a week this winter and spent a week in Haiti this past fall. When I have the energy I hike and back country camp. Granted, sometimes I don't leave the house for a couple days at a time because I just do not have the energy, but anything is possible; if you keep an open mind about how you'll get it done.
And I wouldn't worry too much about the bag. I figure when I end up with one, I can use it to throw at the pesky kids who are tearing up my lawn...
05-05-2014, 07:12 PM   #11
racheljanine
 
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I just joined too, and are in the exact same boat as you, although I already had my scopes, Im waiting on my scans. This is probably been one of the scariest things I've had to go through and I feel the same way about other people, my friends, my family. Why do they get to lead a normal life and I don't? The only thing that seems to help me is finding things to laugh at, but it's hard when its the only thing that is on your mind every second of every day. Im sure one day things will get better, but at least reading some of the positive things on here gives us hope. good luck!
05-05-2014, 07:33 PM   #12
DJW
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Welcome racheljanine.
05-05-2014, 08:25 PM   #13
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Why do they get to lead a normal life and I don't? The only thing that seems to help me is finding things to laugh at, but it's hard when its the only thing that is on your mind every second of every day. Im sure one day things will get better, but at least reading some of the positive things on here gives us hope. good luck!
I find this thought process, while part of coming to terms with your illness, is not very conductive to recovering emotionally. More then a little becomes navel gazey and quickly becomes a spiralling chain of "what ifs" that can easily strangle you. It sounds like you're surviving it though, I often found the inherent comedy in the universe also helped me come to terms with my illness.

Trust me, normal does eventually come back. It is admittedly a slower, more careful normal but still a normal. The human mind might be three pounds of fatty acids but there's a lot more there then that.
05-05-2014, 10:49 PM   #14
ronroush7
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Welcome yo the group. I am sorry for what you are going through.

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