• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Christina's Story

Hi, my name is Christina I am 17 years old and I am new to this whole Crohns thing. I was diagnosed in Sept. 2009. I am not on any medication, but most likely in the next few weeks I will be put on something (probably Remicade) Here is my little background story....I think it started when I was in my second year of high school, my health started to decline. In the winter I was always really pale, and had no energy at all. I was not growing very much and I wasn't really gaining much weight, just kind of staying in one place. Then in grade 11, things just got worse. I was tired everyday, and during the christmas holiday I started to get really gassy and have looser bowel movements more frequently. I thought I had just eaten some bad food, or was not eating the right things, and I really didn't think much of it. It went like this for a little while until about July, when I noticed that I was loosing weight much more significantly and I couldn't eat a lot (even for me, I am a picky eater and have never been able to shove food in my face) at one time. I started to get pain and bloating in my abdomen and I had no idea what was going on. During the vacation, it was hard for me to do anything. Getting up was hard, I had no energy, when we drove to Alberta, I didn't get out of the car much because I just couldn't. I had little spasms of pain during the day, that would make me stop and bend over in agony, but I tried to brush it off. During that time I was taking extra iron supplements because I was becoming anaemic.
The pain continued thorughout the summer, and I remember hiking in Banff at a dinosaur tourist attraction and I could barely make it up an incline without being exhausted and bending over in pain. Everytime I ate, lost my appetite quickly and had pain shortly afterwards. I decided to go to the doctor and demand answers about what the heck was going on. In early Septemeber I had the usual tests which were horrible and a first for me. I had the barium swallow, ultrasound (which was very painful) bloodtests, an x-ray, I forget what it was called but I had to drink some clear liquid and then was injected with some dye (which they totally messed up, they butchered my arm!) After the tests they wanted me to come to the hospital, which I thought was like a quick appointment, but they admitted me on Sept. 11th and I was not planning on staying more than a day. They put me on IV for the whole night while I waited to get a room. They starved me for 3 days, ( after not eating for 3 days I was 66 pounds!)thinking I was going to get a colonoscopy soon (which didn't happen right away) so they finally let me eat something, but then they told me I was getting the test done soon so I had to stop and clear my system again which was not cool! I was very scared and every morning they would wake me up and take my blood. I got no sleep in the hospital and was going out of my mind. I hated being there so much, I just wanted to go home. I had just started school (only 3 days in and I was stuck in the hospital) Once the colonoscopy (through throat and bottom, but luckily I was knocked out totally) was done I was diagnosed with Crohns and was immediately forced to go on the NG tube which was horrifying. The first time they shoved it down my nose was awful, and it took forever for me to learn it. I was so frustrated, scared, and angry. All I wanted was a subway sandwich, but anything with bread, meat or cheese would do. I was in the hospital for 2 and a half weeks, which seemed like forever. The worst part was knowing that when I got out I still would have to be on the tube and not eat any solid food for who knew how long. I spent a month and a half on the stupid tube, earning for a morsel of solid goodness( all I could have was chicken soup broth and red gummy bears) During that time I became obsessed with the food network and cooking (or anything to do with food in general) I was cooking food for the family, trying to fill the void of eating. Thanksgiving was really hard for me, but by Halloween I could eat solid food (slowly introducing foods) but was still on the tube. I gained a ton of weight while on the tube and eating together. I had so much energy, and felt really good. No pain or anything. In November I was able to get off the tube and I went to New York to celebrate and could enjoy the American thanksgiving instead! Since then I have been doing good, but slowly I have been loosing weight since May and the pain has now returned, along with not so good bowel movements. My mom is worried and she and the doctor want me to go on something, and I just don't know if I'm ready, I don't want to rush into anything unnecessary and have consequences that outweigh the good things. I am not in terrible pain, but I know that its only going to get worse. I am just terrified of drugs, and after doing some research, and hearing some of the horror stories I am more reluctant to start anything. I don't want to be forced to go on anything that I am not sure of, so I joined this forum to help me cope with this life changing disease and what goes along with it and maybe make me feel better about something. Thanks for your time and have a great day:)
 

mikeyarmo

Co-Founder
Welcome Christina! I am sorry to have read about some of the trouble you have been through and can not believe how thin you were at one point!

I starting having symptoms like you around the same point in my life and while I was not on an NG tube, there was a time when I was on a liquid only diet and also obsessed over the food network.

I hope you find that the forum will help you cope with the disease and help you meet some new friends :D.
 

Crohn's 35

Inactive Account
:welcome: Christina!! My, you surely went the hard way to get better! I have had Crohns over 18 years and never once did I get the NG tube, they tried once or twice and I said no. I would rather not eat that have that done,so you are very brave indeed! I know your mom is worried and we as parents worry about our children it is our job. I know you dont want to be on anything for meds but there are mild choices and of course the biologics, in which many have done so well with it.

You will get alot of support here, many people your age here from all over the world and everyone is helpful and supportive. We truely are a great community and we will help you any way we can. Please keep us posted on how you are feeling and the meds that you decide to go on.

Glad you found us, welcome aboard!!!:)
 
Location
da UP
Christina,

You have described a bad disease. Take the meds they may make a huge difference. You know first hand what life is like without them find out what life is like with them. Good Luck we all want the best for you
 
Christina, welcome! If you're losing weight your body needs a little help. I know the side effects can be scary but you have a diagnosis and need to keep your disease in check to prevent further complications. Also, check out Ziggy's thread concerning his recent stem cell transplant. A truly inspiring read.
 

Astra

Moderator
Hi Christina
and welcome

I never had any meds for 5 years after diagnosis, only Pentasa to maintain, so it was a bit of a shock when I ended up in hospital with IV hydrocortisone, metronidazole, prednisolone, morpheine and codeine! But these meds saved my life, and I avoided surgery too, so do yourself and your body a favour, and think about trying them, it will be a relief to your well being and your system, your body can't cope alone without some intervention, especially if you're flaring with inflammation. I've been where you are, reluctant and in denial, It's not easy. Try not to fret about scary horror stories, just stop reading them! Check out our Remicade Club Thread here on the forum and see success stories for yourself. Wishing you good luck with whatever you decide, any questions, fire away!
Lotsa luv
Joan xxx
 

DustyKat

Super Moderator
Hi Christina and :welcome:

I'm glad you found your way here. I understand the predicament you find yourself in but remember back to how it was before you went to hospital. Of course this is only my personal opinion and everyone is different but my daughter didn't have the opportunity to have medication prior to her diagnosis, she was diagnosed on the operating table, and the mess untreated Crohns it left her in was appalling. I'm not suggesting this is going to happen to you, just think long and hard about keeping this disease in check rather than trying to get back in control. I know the side effects of medication can be terrifying but so can untreated Crohns.

You have found a great place for support and info plus there's heaps of members around your age so you will be a very welcome addition. Good luck and welcome aboard!

Take care, :)
Dusty
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Christina, I agree with all the above!! Do something to keep it under control!! Good luck and welcome!!
 
Oh Christina, I feel for you. You have had a rough road thus far with CD, but I don't have to tell you that. You need to go on some type of medication. I have been where you are and refused to properly treat my CD. I have had three resections thus far and I know that sometime in the future, I will most likely need another. I'm 35, I feel much, much older than that. I have missed out on a great deal of life by not properly treating myself. I have the same concerns as you regarding the side effects of the meds used in treating CD. Just recently I have come to the conclusion that I need to take a leap and dive into treating my CD with some of the Biologics out there. I am going to start Humira, currently waiting on med to arrive. I am extremely nervous, but I know that I cannot go on living without treating my CD. Please believe me, you have to take this risk. I have voiced my concerns with my GI. He assures me that they will closely monitor my reaction to this med. I am lucky to have a very open dialogue with my doc. Don't be afraid to discuss your concerns with your GI. If he/she doesn't want to give you the time and attention you feel you deserve, by all means find a doc that will. I probably beat this in the ground, but learn as much as you can about CD. Knowledge is power and with the 'net, you can learn so much about CD and current treatments. Arm yourself with options and become a key player in the treatment plan for your CD.
Your CD will not go away, as much as you try to deny it's presence. Not treating will most certainly lead you down a road you really don't want. You are very young still, don't throw away your youth to this awful disease. Fight it as best you can so you can enjoy life.
 
Hi Christina and welcome,
I am still addicted to the food network after all of my time not eating. I still end up in the hospital quite often and the nurses always ask me how I can watch that when I am not allowed to eat anything but it is kind of comforting to see it even if I cant see it. Good luck with everything.
 
Top