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Just Need To Share

Jtracker

Jtracker

Location
London, Ontario
Hello to all of you,

I've been needing a place to get all these emotions off my chest, and perhaps to hear that other people know what it feels like like. I've had crohn's officially for almost 5 months now, and I must say, it has been the most difficult thing I have ever faced. Not because of the pain, the fear, the indecision and waiting, or even the doctor being so bold faced as to say its "pretty serious", but because of the isolation it makes me feel.

I feel alone because here I am, a 19 year-old student, facing what was suppose to be a bright future into the world of medicine, now being led into it through the patient end. I try not to feel any self-pity, but I don't know how to make this predicament okay. My parents have tried to tell me the future looks bright, but since my recent symptoms, I haven't been so sure.

I stumbled across this forum while looking for a way to deal with the nausea the Imuran has begun to cause me, and how long it usually lasts for while taking the stuff. I suppose its dependent on each person, I just wanted to know if I can expect this discomfort as long as I'm taking it. I hope to meet people who can make me believe I am actually fighting for something, instead of just delaying the inevitable. I wish you all the best in your struggle.

-J
 
seebee

seebee

You came to a place where you are made to never feel alone.
How long are you taking the Imuran and at what dosage that it's causing nausea?
Are you having any symptoms now or is the Imuran helping with that?

Hope you feel better soon!
 
Jtracker

Jtracker

Location
London, Ontario
Thanks for the quick reply!

It's only been a couple of weeks since I started the Imuran, I was on a 50 mg dose just to test it, then last tuesday I got bumped up to 175 mg until I can figure out payment for Remicade (so 3 months to go, pretty much).

Today was pretty rough, I kind of had a run to the washroom with no real warning, violent and sudden, followed by a nausea that has followed me until just an hour ago, when I took my daily dosage. I'm worried the Imuran is going to keep this going tomorrow as well, and I'm unlucky enough to have an exam.
 
Hope345

Hope345

J

I Want to welcome you also.
You will have so much support here and find out a lot of information.
Everybody's Crohns is a little bit different and symptoms seem to vary.

Let us know how you are doing.
 
Grumbletum

Grumbletum

Hello Jtracker :) I'm very glad you've found us, but so sorry it's because you have a Crohn's diagnosis. It is an awful lot to get your head around.
Did the doc tell you switch straight away to the 175mg dosage or did you have to taper up gradually? A lot of folks do the gradual taper to help the body get used to the higher levels of the drug. I was started on 25mg and raised 25 every week til my therapeutic level of 125mg.
Even then I had nausea and severe headaches for a few weeks, but they did disappear eventually. You might want to discuss a taper up with your doc or, like others have said, splitting the dose over the day and taking it with or after food might help - it did for me.
 
maryt

maryt

Hi Jtracker, Just a short note to say hang in there. I was diagnosed with crohns at 19 and, at the time felt robbed of my young life. I am now 48. I have a beautiful, handsome 19 year old son who is at Uni studying Quantity Surveying - and although I have had alot of treatment over the years - I have been mostly kept well with the doctors in Newcastle Upon Tyne, England. I had my first op 2 years ago to correct an internal fistula and narrowing, and have not looked back. I am a dental nurse with a better attendance than other workers - even though I spent most of my young life in pain. I have noticed over the years the medicines are improving all the time - and the doctors are looking into new areas to improve our lives. I am currently on Azathioprine and Cholestagel tablets, which means I have no diarrhoea at all. You do have so much to live for - you'll see.
 
KWalker

KWalker

Moderator
Welcome to the forum JTracker, and all the other newcomers who have posted. I am now 22 and I was diagnosed with crohn's when I was just two years old. I've been through some pretty hard times and spent lots of time on medicine. There were many times when I wanted to just throw in the towel, but after pushing through, I can now say I have control over my crohns. When people say it will get better, it's really true.

I am a full time student in University and living a completely normal life so don't let anybody tell you otherwise. We have a thread on here as well where people share their careers with others and if you have a look you will see a TON of very successful members on here.

If you're 19 I'm going to assume you're in college or university? I go to Brock in St Catharines and we have a disability office which really helps me out if I ever need it for school. It lets me write my exams in a room close to a bathroom, it allows me to have extensions on papers if needed, and if I ever miss lecture it allows me get notes right from the professor without any trouble. Fortunately I haven't really needed to use them this year but I had a few problems back in late 2011 either 2012 and they were a huge help.

Who is your doctor in London? I have Dr. Howard up until I was 18 and he was an amazing doctor. I think he is the reason I'm where I am today because he kept pushing to make sure I got the best treatment.
 
X

xmdmom

While there is no good age to be diagnosed, I do think 19 is a difficult one. Know that can still have a very bright future. There are physicians with Crohn's and you may want to connect with one. A quick google search found http://www.amazon.com/Kitchen-Table-Wisdom-Stories-That/dp/1573226106/ref=cm_cr_pr_product_top which was written by a physician who was diagnosed with Crohn's at age 15. If you do go into medicine, your experience will give you empathy for patients later and help make you a really good doctor.

Hope you feel better soon! If imuran doesn't work well for you, there are other medications. Sending you a hug!
 
Jtracker

Jtracker

Location
London, Ontario
Wow.

Thank you all so much for the warm welcome. So to get some answers out of the way to some questions I got:

1. Yup, I am a Uni student, and you can bet your behind I am going after this disease once I become a doctor. Sure, I have it, but that none of my friends or family had any idea what it entails is just wrong. I have some ideas of my own how to approach this disease, and will likely put some trials on if I can make it into medicine.

2. I'm at Dr. Feagan while in London, and Dr. Silverberg in Toronto for the rest of the year. They're both pretty good at what they do, from what I'm told.

3. I cannot taper up due to the severity of the disease. You see, when I got off Prednisone for the first time, it took a couple weeks before a full relapse of my worst symptoms. This lead my doctor to believe I have a very persistent version of Crohns, and there may not be a whole lot we can do if we do not hit it hard and fast. I'd be on Remicade and Imuran right now if I had the money, but I need to fail Imuran in its full dosage for 3 months to afford the Remicade (government handouts are funny like that)

4. Today I feel better and am feeling up to this exam. I have definitely decided on two things based on recommendations and comments, and that is to split my dosage of Imuran (and possibly Prednisone) between morning and night, and to up my vitamin D3 intake to 2000 IU a day. I'll report back the results/changes if there are any.

If someone hugs you today, know that I wished for it as a thank you to each one of you.

-J
 
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