Crohn's Disease Forum » Support Forum » This is not easy

04-11-2012, 08:11 AM   #1
New Member
Join Date: Apr 2012
This is not easy

Again, I'm 30yrs, diagnosed with TI crohns since December 2011, CMV duodenal disease february 2012

Now taking, pentasa 3gm, humira 40mg biweekly, pariet 20mg, folic acid 5mg, valcyte 900mg, osteocare, multi. Vit.

I don't know why I'm feeling this way !

Before the diagnosis, I was struggling for 2 months not knowing what I have,,, I wasn't afraid, I just hated not knowing what's wrong with me.

After I was diagnosed with crohns, I was sad, and had a difficult time accepting it.

One month later, my medical team started to doubt the diagnosis, thinking that this could be TB.
It gave me hope that I might find an end to all of this. Instead, I was found to have Duedenal CMV disease on top of my crohns.

This was devastating to me.

I felt so lonely, angry and sad.

Then I found this forum, which helped me a lot.
I mean, sharing your story, knowing that you're not alone and receiving support from people who know what you're going through, is really comforting and helpful


I'm started to worry. Actually I'm terrified.

I've been reading a lot about how hard it might be.
The surgeries, the ER visits, the relapses, the side effects, the complications, the stomas, the fistulas and abscesses.
It's hard and a lot to take

I'm thinking to myself,,,
This could be me in few months. I might need this surgery. What am I going to do and how am I going to handle this.

I'm Sorry
I'm just afraid.
04-11-2012, 09:21 AM   #2
Senior Member
scottsma's Avatar
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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hi, sorry you're feeling really down.Please try not to think about stuff that may NEVER happen. Just get through one day at a time.come on the forum,and when you read some of other peoples stories you might not feel so bad.Hope things get a better for you soon.
04-11-2012, 09:48 AM   #3
Senior Member
chrisnsteph1022's Avatar
Join Date: Jan 2011
Location: Tennessee

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You may be one of the lucky ones that never needs surgery. I've had CD for 9 years and have never had an abscess, fistula or needed surgery. And I have a moderate to severe case. It's apparently resistant to treatment, but surgery has not even been mentioned.
dx 2003
Remission 2004-2010
Moderate/severe flare through entire colon 12/2010-10/2012
Lialda, omeprazole, Remicade, Methotrexate, Folic Acid, Questran
Been on Asacol, prednisone, Apriso, Imuran, Entocort and Cimzia
FB support group
04-11-2012, 01:33 PM   #4
New Member
Join Date: Apr 2012
Thank you a lot for your kind words. Really appreciate it.

I'm just new to crohns, 4 months, but it seems like a lifetime.

When I go see my GI specialist, and sit in the waiting room, I can tell who has crohns, they always look tired, think and sad. I try to stay positive, but I'm afraid Ill have that look in the future.
I don't want to be negative, but I'm sharing my thoughts.

Thanks again
04-11-2012, 01:40 PM   #5
Carole Ann
New Member
Join Date: Apr 2012
Hi...On a positive note you can live a good, productive happy life with crohns. As long as you have it controlled. I do feel for you is scary and depressing when you feel so ill. There is a good future for you there are some amazing drugs that can help. I have suffered for 10 years with crohns and just started infliximab...I feel so much better from feeling half dead. Good luck and hugs
04-11-2012, 01:52 PM   #6
Senior Member
Cookie's Avatar
Join Date: Jan 2009
It is scary, but like scottsma said, don't worry about the things that may never happen. People tend to congregate on this forum when things are at their worst. I have been on here for several years and have seen many people come and go. When they go into remission, they tend to forget about things and you don't hear from them anymore. And for many people, that can be YEARS with no symptoms. It's easier said than done, but try to just roll with it and take things as they come.
04-12-2012, 07:28 AM   #7
New Member
Join Date: Apr 2012
Thank you very much for your constant support.

I don't have much symptoms now, but I'm just in constant fear that at anytime, it could hit me.

I don't want to go to the hospital again. Last admission (10 days) was the worst time of my life

I don't want to depress you guys, but this how I feel and this is what I'm afraid of.

On the other side Doctor said I can stop pentasa in 3 weeks time. I assuming thats a good sign
04-12-2012, 08:51 AM   #8
Senior Member
Join Date: Mar 2012
Location: Australia

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Hello someone, it's understandable that when you read all these posts about what the worst is like fir some with crohns, it would be scary, only just being diagnosed. But not only may you never need a surgery, but you may be in remission for the rest of your life. Surely if your GI feels you don't need pantasa, that's a great sign. It's for mild crohns, and if you won't be needing it, and have no major symptoms, then you may be one who has a few flares at worst, which you'll take some imunesuppresants or something for, and not need to worry about fistulas abscesses ect, let alone a resection. Sometimes reading what the worst in crohns can do, does more harm then good. But at least you found this forum very early in your diagnoses, and if you do have any symptoms, there are many fantastic people on here, with great advice and support. I wish you the best, and try not to think of the worst of this disease. It's just a chronic illness, it's treatable for the most part, and there are many who never need to worry much about it.
If you do go through some difficult times with the disease, we're all here for support, and you can vent as you feel you need to. It does help to speak to others who have the exact same issues. Best wishes xo
Diagnosed crohns disease 6 yrs/candida
Temorary illeostomy, 70+cm bowel recsection, ulcerated bowel...currently stricturing.
Meds: failed Infliximab, azathiroprine
Currently on long term prednisone,6mp,humira, nizoral, and vit supplements,b12 shots.

Love the forum
04-12-2012, 02:25 PM   #9
New Member
Join Date: Apr 2012
Hi Irene

Thank you very much,,,, it's always a relief to have someone who can understand what you're going through, and I can say this forum is really helping me.

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