Crohn's Disease Forum » Your Story » Hello, one more teen crohnie ...


03-30-2010, 03:07 AM   #1
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Hello, one more teen crohnie ...

Hey all, my name is Nemanja and Im 18 year old guy from Serbia. Newbie to crohns, recently diagnosed. Had a surgery in january where they removed 87cm of my small intestine, part of large intestine and appendix. Had symptoms for like 2 years ... After operation, I had 40kg (177 cm, so I was like broomstick) and got hospitalized again so they could give me the right therapy ... Soon it all started getting better, my appetite is normal again, I dont feel any pain and Im getting weight (now 53kg )

My therapy is :

20mg Prednisone (but tappering off)
20mg Controloc
AlfaD3
Feroglobin
and REMICADE (tommorow going to get 2nd infusion, wish me luck)

Last edited by Manjane; 03-30-2010 at 03:11 AM.
03-30-2010, 05:53 AM   #2
pcbgirl227
 
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Hi Nemanja and Welcome!!! Glad to hear you have some relief after the surgery. Hopefully it will be for years to come! You will be fine with the Remi infusions, just make sure to drink lots of water before going so you have no problems with finding a vein. Best of Luck!!!
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03-30-2010, 07:19 AM   #3
Astra
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Hi Nemanja
and welcome

Good luck with the Remi, I'm hoping to try it soon, glad things have settled down now and you're gaining some weight back. lots of friendly people here to support and advise you
see you around the forum!
Joan xxx
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03-30-2010, 08:04 AM   #4
Crohn's 35
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Join Date: Oct 2009
Manjane! You have had rough time! Glad you are doing the remicaid, it seems to help so many people. I have had a resection but you had alot taken out. Do you have lots of D? I too am tapering off Prednisone, works good but havoc on the head. Glad you found us, hope to see you around so many nice people here to help you out! Keep us updated on your infusions.
03-30-2010, 08:41 AM   #5
Lydia
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Welcome! My parents and 2 older brothers are from Subotica.

I start remicade today. Good luck, I hope you keep getting better.
03-30-2010, 09:33 AM   #6
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Jettalady said:
Manjane! You have had rough time! Glad you are doing the remicaid, it seems to help so many people. I have had a resection but you had alot taken out. Do you have lots of D? I too am tapering off Prednisone, works good but havoc on the head. Glad you found us, hope to see you around so many nice people here to help you out! Keep us updated on your infusions.
Huh whats D ? sorry for being stupid

Yeah mine resection was huge ... but it was emergency case so couldnt do nothing (day before i didnt even knew what is crohn). After that it showed up in the same place so ... surgery is the worst option for crohns ! They removed so much of my intestine so I hope i will never again have surgery.

Liking this forum, already found many helpful stuff

Thanks everyone !!
03-30-2010, 09:50 AM   #7
Crohn's 35
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Sorry about that, D is Diahreah! I forget sometimes newbies don't know. C is Constipation for future reference . I had alot of D after my surgery, just wondered if you do too. I was on Cholestyramine (Questran) and it helped me so I have have a life and go out without worry. Keeping your bowels as normal as possible helps to keep the nutrition in your body longer, and being so young you need that right now. Glad you found us.. a good place for info.
03-30-2010, 11:17 AM   #8
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Oh

Well right after surgery I had terrible D , after I started eating ...They gave me loperamide, it helped a little. But my stomach got stabilized in few weeks. And now it is soft, my dr said I shouldnt worry about it coz it needs around 6 months after surgery for intestine to stabilize totally.

Im so full of energy now, crohn made me forget how it is to be a normal person in last two years ... Now I dont feel like I have anything, obviously remi is doing his job
03-30-2010, 11:22 AM   #9
Dustin
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Hello Nemanja and welcome. I am glad to hear Remicade is working for you. I've been on it for a few years now, and it is just starting to not work, so they are bumping me up to every 6 weeks instead of every 8 weeks, to see if that will help.
03-30-2010, 12:06 PM   #10
LOSTnut
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Hi Nemanja -- isn't it just awesome when you feel good again after years of running? I wish you all the best and hope everything will work out for you.

I feel you about the surgery. The last time I was there with an abscess they wanted to operate without trying antibiotics first and when they wouldn't let up, trying to force me to have it done I ran, meaning I left the hospital "against medical advice" which is a no-no here in the States. But, I just had a feeling that there was still something else that could be done without starting to cut. My GI was proud of me that I left and now I just hope that my insurance will not cut me off because I left.

You hang in there and never let them cut again as long as your conscious WITHOUT a second opinion.
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03-31-2010, 10:54 AM   #11
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Yeah it is truly amazing feeling hehehe

Just got back from hospital, everything went cool with remicade ... Getting another one in 4 weeks.
03-31-2010, 11:07 AM   #12
Crohn's 35
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Good stuff! So many people do amazing on Remicade! Hope you continue to get better everyday! Good luck!
03-31-2010, 11:18 AM   #13
Claire617
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Heya still kinda new to this place myself, but has helped me a lot finding and reading about people my age who have crohns as well, even though I wouldn't wish on anyone, good to know you're not alone. Sucks i had an allergic reaction to remicade but its cool it's working out for you!
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03-31-2010, 12:42 PM   #14
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Yeah thats what helped me too ... and having another young crohn sufferer in hospital room, we played games, chatted and days were going much faster heheh

You are 1992 too ?
03-31-2010, 01:30 PM   #15
Claire617
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Yeah everytime I've been in hospital I've just been surrounded by really old people so time kinda dragged on cus I had no one to chat with, well 1990 but close enough!lol
04-04-2010, 06:18 AM   #16
Tweaks
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Man, you're story is incredibly similar to mine except worse, I'm glad that you are doing so much better after your surgery, hopefully my recovery from surgery will be as good as yours..
04-04-2010, 08:14 AM   #17
Pirate
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Hey do you hear that guys, Claire's picking on us old people. LOL That's okay. we understand. LOL

Hospital stays are a hard thing to get use to. You just want to be able to get up and do things like go home! I think it is a great thing when they pair up people with others around the same age. I have made some great friends over the last 24 yrs just by being roommates at the hospital.
It is good to see all you old adults finding this place and for the insight you have to offer for us "old people". It is never fun no matter what age you are and the fact that we can come hear and vent and give support is great. Age pretty much gets thrown out the door.
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No surgeries
Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.
04-04-2010, 10:36 AM   #18
Claire617
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I really didnt mean it like that LOL however these people in hospital were ancient lol ...hey i know i'm guna hit that age one day haha
04-04-2010, 09:32 PM   #19
Pirate
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I know what ya mean Claire, when I was first diagnosed at the age of 28 and in the hospital I was roomed with another guy that was 76. We didn't converse with each other much. He was quite cranky.
The next time I went in that year I was put in the peds ward. I was the only adult surrounded by kids from a few months to 14. Boy was I the odd kid of the bunch.
04-05-2010, 01:46 AM   #20
Tweaks
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That sounds nice, during my hospital stay I had my own room.. while walking around I noticed that I was the only person under 80 and according to my dad the put me in the dialesis ward or something? I think that's how you spell it.. it was weird, and incredibly depressing.. I would have welcomed a cranky 76 year old to room with haha
04-26-2010, 10:02 AM   #21
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Just to update ... Today I had blood tests and it seems its not so good , CRP 15 , SE 26 :/ (im tappering off prednisone, can this be related somehow ?). This wednesday getting 3rd dose of Remicade and gonna see with my GI what to do ... Maybe I will get something new in my therapy (actually Im pretty sure this is gonna happen).
04-26-2010, 03:32 PM   #22
Astra
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Hi there
good to have you back
Your CRP is quite raised but not a lot, it could be the tapering off Pred, but you've only had 2 fusions, maybe it's just not kicked in yet? I'm not too sure, lots of people on here on Remi will help with that.
hope everything goes well on Wed
xx
04-30-2010, 04:42 PM   #23
Manjane
 
Join Date: Mar 2010
Location: Belgrade, Serbia
Back from hospital, was there for 2 days ... Got 2 blood transfusions and Remi therapy ... Blood tests are good, CRP is back to normal 5.

Today was the last day of prednisone (FUCK YEAH), and now starting imuran ... Pretty scared because chances of lymphoma are now bigger My GI said that i shouldnt be worried about that and its 1 in few thousands cases ...

Is anyone else using Remicade + Imuran (Azathioprine) ?
05-01-2010, 12:59 AM   #24
Keona
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Hey Manjane. Glad to hear your CRP is back to normal and last day of prednisone!
I cant comment on the Remi and Imuran but wanted to congratulate and welcome you here - there are a lot of great people here who truly understand.
Wendy
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Last edited by Keona; 02-19-2011 at 04:19 AM.
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