Crohn's Disease Forum » Your Story » I may be small, but I am strong.

04-11-2017, 09:09 PM   #1
Join Date: Apr 2017
Location: Lisbon, Portugal
I may be small, but I am strong.

Hi all, I'm Kika, a Portuguese teenager living with Crohns and I've been diagnosed for 1 year and an half.

My current medication is one Azafalk pill a day and will soon start Remicade due to unexpected complications.

I'm extremely open about my disease, considering I had a really bad time because of it and want to share some light with those who don't know about it.

I had a really bad diagnosis. My first hospital stay was horrible and inconclusive. Besides having needles all over my hand, I wasn't allowed to eat for days and kept dehydrating because of the regular "toilet breaks". The second one was better but food was still a problem, and still is.

I got extremely traumatized but refused psychological help at the time, ending up hiding away from everyone. This affected my reputation at school and social life a lot, but to be honest, I don't regret it because I had time to think better about my life path and decisions.

I quit school due to health complications and will change majors ( going from Humanities and Social Studies to Performing Arts ) and am currently helping some friends with mutual personal projects.

Something I want to talk about here, and see if someone might have gone through the same, is the "complications" I have had ever since I was diagnosed...

- My hands shake a lot, and when I mean a lot I'm basically saying ALL THE TIME. It's really annoying - I can't write properly, I can't hold things without creating an "handquake" like my brother calls it and it also makes people give nasty stares.
- I also have memory shortage and I can't remember things that happened in the morning or the day prior.
- I have fevers during the night and my breathing became irregular and I basically fall asleep everywhere ( even sitting on a sink ). Also, pimples. Oh those nasty bastards keep appearing all over my face.
- Hair growth became slower. Blood pressure became even lower and oh the breathing problems and weak immune system. "You're basically a baby again" they said. Also, my weight goes away really quickly but never comes back.

Can you help a newbie out here relieve some of her fears? Much appreaciated.

Now I will talk about some things I like just to make this happier...
- Volunteering. I love helping others.
- Everything related to arts: music, painting, acting, dancing, etc.
- Comic books and TV Shows, especially crime based and comedy ones.
- I actually enjoy home decor, blame The Sims.
- Video Games, especially The Sims series.
- Sleep, important and useful.
- Purple. I love purple. Don't even get me started on that, I could talk for ages.

Regarding the title of this post, well, I'm 150cm and I consider myself to be extremely strong emotionally.

I hope we can help each others with our journeys and find a cure for all these nasty problems that make us sick and sad.
04-11-2017, 09:29 PM   #2
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cmack's Avatar
Join Date: Aug 2014
Location: British Columbia

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Hi Peach,

I'm so sorry to hear of all the troubles you have had. I welcome you to this forum. Come here any time, there are a lot of really cool and understanding people here. You can talk to me any time. pm's are cool as well.

I honestly wish you the very best and I feel for you. This disease is tough but you can beat it back into remission and have a fairly normal life with the right meds and diet. There is hope. Never give up!

Your new friend and teammate,

04-11-2017, 10:20 PM   #3
yikes's Avatar
Join Date: Apr 2017

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Hi! I'm also a teenager with Crohn's. Your fatigue, hair growth, shortness of breath, and memory shortage could all be signs of anemia. Anemia is not an uncommon side effect of crohn's. I would recommend going to your doctor and asking for blood tests. I hope you start to feel better!
04-12-2017, 05:46 AM   #4
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome, Peach. You have come to a very good forum. I agree with everything said above.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-12-2017, 09:09 AM   #5
bobbet's Avatar
Join Date: Mar 2014
Location: cardiff, United Kingdom

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Hey sweetheart, you sound very brave I too as a sufferer have had these symtpoms (they do ease now and then especially the forgetfulness) I had an extremely difficult time through my teens with it (no support what so ever) so Ive only ever relied on myself my whole life and its made me much stronger and very stubborn..Ive managed to developed a positive outlook on life for myself and mental strengh..if you need any support/chat please let me know x
04-12-2017, 10:08 AM   #6
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scottsma's Avatar
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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Hello all,and welcome.Have you noticed our "Teens and young adults" thread ? I'm
not saying that you're not welcome any where else on the forum of course,but it might help to chat to others in your age group to see how they manage this darned disease.Very best to you all.
04-12-2017, 10:21 AM   #7
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Scipio's Avatar
Join Date: Oct 2015
Location: San Diego

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Hi Peach, welcome. Your hand tremors may be due to nerve inflammation or damage brought on by the Crohn's. It's one of the many extra-intestinal effects of the disease. Hopefully it will improve once you get on the Remicade and get the disease more under control.

Also, the point by Yikes about anemia is a good one. In my case I've had more health problems from anemia caused the Crohn's than directly from the Crohn's itself.

Crohn's Disease Forum » Your Story » I may be small, but I am strong.
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