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Crohn's Disease Forum » Your Story » Just diagnosed...scared


07-04-2014, 07:53 AM   #1
Shari
 
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Just diagnosed...scared

Wow....been reading all these threads and I am scared as heck. Dx last Friday but haven't had the "treatment" talk with my Dr. Thank you for all the reading material here...

DX June 27 2014- however landed in hospital in April for 4 days after a night of severe pain and bloody stool. I was so scared... lost 14 lbs and couldn't figure out why. The dr told me I had colitis and would be fine, chance of another episode slim to noon. 6 weeks later same thing, saw Dr and we started to try and DX. Blood work and colonoscopy confirmed my fear. I really just want to feel normal....is that too much to ask?
07-04-2014, 08:40 AM   #2
DJW
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Hi Sheri.

What your going through now is very common when newly diagnosed. There is a period of questioning, how did this happen? Did I do something wrong? (No you didn't). Is life effectively over? (No) Do i need to give up on my dreams? (No) There is a fear that life will never be the same. And the treatment scares a lot of people.

You're not alone in this. We've all been through it.


Try and take it a day at a time. Ask lots of questions. Keep in mind there is s disproportionate amount of negative/worse case scenarios on the internet because people happy and in remission don't often post because their enjoying life.

Sending you my support.
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07-09-2014, 10:55 AM   #3
valleysangel92
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Hello and welcome to the forum

I'm sorry to hear you've joined the IBD ranks, but I'm really glad you've found us.

It's natural to feel scared, this is a lot to take in. Do you mind if I ask what it was you were diagnosed with, Crohns or UC?

Treatment varies for both but there are an increasing number of options available.

Take some time out, rest and recouporate remember that this does get better.

What treatment do they have you on at the moment?

One of the first things you need to do is look at treatment options. If you aren't already on a maintenance medication (a medication to induce and maintain remission [no clinical signs of disease]) . Take a look at the wiki section and the treatment sections of the forum.

Be careful about googling things, you can find some good information but it can also be full of scare stories.

I know it doesn't feel like it right now but things will get better and you can get your life back. You just need to take a little time to get things on track.

Don't be afraid to ask any questions you have, we've all been where you are right now. There's nothing that we'll think is silly and you don't need to be embarrassed, there isn't very much we won't have seen heard (or felt) before.
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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
07-09-2014, 11:24 AM   #4
Shari
 
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Thank you! Offi ial DX is Crohns. And am taking Pentasa. A lot of it... meet with my GI doc on the 22.
07-09-2014, 11:31 AM   #5
valleysangel92
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Okay, pentasa is one of the mildest drugs used in IBD. It's generally better for UC than crohns because it only treats the surface inflammation. This might mean that you need to talk to your doctor about having something with a bit more power behind it, such as an immunosuppressant medications like azathioprine.
07-09-2014, 11:58 AM   #6
Shari
 
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I will and I am sorry I should expand. I have both Crohns and ulcerative colitis.
07-09-2014, 02:38 PM   #7
DJW
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I will and I am sorry I should expand. I have both Crohns and ulcerative colitis.
Do you by chance mean crohn's colitis?
07-09-2014, 02:40 PM   #8
Shari
 
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No my paperwork has it listed as crohns disease AND ulcerative colitis. But hey im new to this sooooo
07-09-2014, 02:43 PM   #9
DJW
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Interesting. I ask because crohns colitis is colon only involvement.

Thanks.
07-09-2014, 02:47 PM   #10
Shari
 
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I have it in my small intestines and colon at least according to my paperwork
07-09-2014, 02:48 PM   #11
Shari
 
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And still awaiting test on my esophagus.
07-09-2014, 02:52 PM   #12
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That's not UC and CD, that's Illecolic Crohn's Disease. It can be in both parts of the GI tract, and infact, Illecolic is the most common form of CD. It accounts for approximately 50% of diagnosed cases. UC is entirely different disease that's grouped with CD because they have similar treatment and symptoms.
07-09-2014, 02:53 PM   #13
Shari
 
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Both names are listed from path...but I have read about illecolic
07-09-2014, 02:54 PM   #14
Shari
 
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I am sure the 22 will be very enlightening
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