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Hi,

I am a 24 year old male who's life was abruptly paused because of Crohn's.  I am not sure if I am going to be able pursue my career dreams anymore because I now have to go on Humira or Remicade.  The reason for this is becuase I am not even sure if I am going to live past the first injection and then who knows how long afterward.  What if I get cancer, sepsis, TB, etc, etc, etc.  It scares me to the point of madness sometimes.  I have thought about seeng a psychologist, but I don't know if that will help.  Also, since I do not have insurance, that would not be a wise thing to do since I can't pay for it. The other thing that makes me not sure of my future is the ability to live in a dorm.  Without an immune system how can I possibly fight off all the colds, flu, and other potentially fatal diseases floating around in college classrooms and dorms?  How can I possibly live a moment without an immune system properly functioning? 

I know I am just worry, worry, worry, but I am just asking if anyone else has had similiar emotional trauma with these meds and eventually actually took the step to go on them.  Thank you.

 Reply posted for Mountaineer.

I have the exact same fears.  My doctor has been encouraging me to consider the biologics for a while now, and I just can't seem to get up the courage to give it a go.  While I know they have potential risks, I also  know the prednisone I am on now will eventually do real damage so I have to weigh them against each other.  It's a hard decision and I don't know what will ultimately inspire me to make the jump to remicade or humira, but I've tried everything else so there's not much else I can do.

 Reply posted for Mountaineer.

I had the same fears before I went on Humira.  I have been on it for nearly 2 years now and I hardly ever get sick. I have 2 young kids and they are always bringing home some kind of bug, but so far I haven't had anything worse than your everyday cold.  My doctor had been trying to get me to take the TNF blockers for a long time before I finally gave in and decided to take them.  After I had to have a resection, I decided that if I didn't do something drastic I would probably have worse things happen than the chance of cancer or an infection.  I feel better now than I have since before my diagnosis, and I can do more things feeling better than I have to avoid from the medication.

 Reply posted for Mountaineer.

I just wanted to let you know what my doctor has shared with me about Humira and Remicade.  First of all, I was on Humira for about 8 months and didn't get sick once.  Just wash your hands and stay away from sick people.  Your immune system is weakened but you'll still have enough to fight the basic stuff.  As far as TB goes, unless you work with prisoners or people from third world countries, you are pretty safe.  Lastly, the biggest fear that I had when I started, the TNF blockers.  The number that my doctor gave me was .016%.  This is the percentage of increase of a risk factor for cancer that the drug actually causes in someone.  Cancer runs pretty rampant in my family, but after seeing that number, I figured, either I get it or I don't, this probably isn't going to be the straw that breaks....

 Reply posted for Mountaineer.

Just saw your question and wanted to reply, although its been a while.....

I don't know that its helpful to talk about "getting past fears" -- the things you mention are scary, so being afraid is perfectly reasonable.  The fears don't go away, but the issue is how to act and make decisions anyway, in the face of the fears.

I have been on remicade for almost two years now, said there was no way Id ever take it, but then I got really sick, was in the hospital for weeks, getting worse, and they were talking about taking out my colon if it didn't work.  I was terrified, but I decided to try.  I had a great roommate in the hospital, and we just made a lot of very sick jokes about it..... we called it "that mouse drug" and she said "you better not die on that mouse drug because I don't want another roommate" and things like that....  acknowledged the fear, but laughed and acted too.  And the remicade worked right away, started feeling better w/in hours. 

One good thing to know is that many of the bad reactions can be stopped by stopping the injection, and you always have a nurse in the room during the injection.

Also, its not like you have no immune system on these drugs.  I haven't noticed a big difference in number of colds etc.   You also have to factor in how much better it is to feel better....  a cold is nothing like a bad flare....

I would suggest learning yoga, meditation, or something else that teaches you to stay present in the face of fear..... also I think its important to find people that you can talk to honestly about your emotions..... this can be harder for young males who are often encouraged to act tough ..... but you need true friends who can empathize w/you and both share and lighten your burden.....

There are no simple solutions because you are dealing with something that is very hard.....  but others have found ways to cope and you can too.   Good luck.

 Reply posted for Mountaineer.

I bet most of us who have started a TNF have been afraid.  I put the decision off (I was deciding for my teenager) for a few months longer than I should have.

What helped me the most was when a friend pointed out that I was ignoring the fact that my son had fairly bad IBD and focusing on a much less likely risk of TB or lymphoma...I think it's the same mentality that makes us all afraid of terrorist attacks when really we're much more likely to get killed driving on the highway near our house.

You will get more colds on remicade and they will last a little longer.  (Get Purell).

good luck with your decision, it's not an easy one.  My son has tolerated remicade beautifully if it helps you to know that.

 Reply posted for Mountaineer.

I was worried about the same things, but I realized that the benefits must far outweigh the risks, so I decided to give it a go.  I'm on Cimzia, and it made me feel better just hours after taking it.    They have to list all of those possible risks for legal reasons (and because of the FDA), and it does scare people when you read about them.  But, you have to ask yourself if you want to continue feeling badly.   I didn't want to feel bad anymore, and I am glad that I took my doctor's advice.  My quality of life is so much better now.  Take the drugs.

 Reply posted for Mountaineer.

I took Remicade and Azasan for 5 years.  It was a life saver since nothing I tried before that would help.  I have just recently had to switch to Humira since the Azasan was causing possible 'pre-cancerous' lesions, and I feel even better now than I did on the Remicade. The side effect list is scary, but to me it was worth the risk because my alternative was misery and probable death. 

ps. the lesions went away as soon as I stopped the Azasan.  and the doctor will monitor your blood work on a regular basis to avoid the worst of the possible side effects.  I hope this helped ease your mind...

 Reply posted for ACA11.

Sorry, computer took over and sent my first post before I was finished.  LOL

I was going to say, don't let the fear, the "what ifs" get to you.  If you do, it messes with your mind like you wouldn't believe.  I am sure there are many out there (including myself) who can relate totally to what you are thinking. 

I caregive for an 82 year old woman who swears every time she takes a new medication the side effects - she has all the symptoms.  And swears all the medication she's on now is making her worse.  Little does she comprehend, it's not the medication, but her diet.  I try and get her to eat healthy but sometimes the elderly are so set in their ways, there isn't much you can do.  My point with this is, yes, the side effects are there.  Do the research - HOW many people developed A, B, and C from the drug?  How strong is your system - do you feel it will truly affect your every day living?  Don't buy into the fear factor, it will just make your guts worse, in my humble opinion.  Ask the doctor question and question (I write mine down so I remember them all when I go). 

I've had 3 labs drawn since taking my meds, the first one came back positive for elevated liver enzymes, the other two were normal.  I was also on an antibiotic the first time and the GI doc seems to think it was because of that.  I go back every two months (which I will have them change to monthly for my peace of mind) for lab check ups. 

Stay strong, focused and know there is an answer out there for all our questions, we just need a little patience and the right combination of doctors to help us along.  (That was more for my benefit! LOL) 

 Reply posted for Mountaineer.

I have had Crohn's for 2 years now.  It's been a battle that I shall never forget.  The last round of scopes done with a new GI doctor brought on a new medication - Azathiorprine, generic for Imuran.  The possible side effects - suppressed immune system and Hepatitis.  The GI doctor said it would be my decision to make.  The side effects were reversable if they attacked me. 

So far, I am doing ok.  I have issues with the Crohn's inflammation possibly attacking the joints in my body (not arthritis) and I've had a minor flare up here and there, but I have to say, I feel better now then I did the two months I was on nothing at all. 

 Reply posted for Mountaineer.

I have had Crohn's for 2 years now.  It's been a battle that I shall never forget.  The last round of scopes done with a new GI doctor brought on a new medication - Azathiorprine, generic for Imuran.  The possible side effects - suppressed immune system and Hepatitis.  The GI doctor said it would be my decision to make.  The side effects were reversable if they attacked me. 

So far, I am doing ok.  I have issues with the Crohn's inflammation possibly attacking the joints in my body (not arthritis) and I've had a minor flare up here and there, but I have to say, I feel better now then I did the two months I was on nothing at all. 

 Reply posted for Mountaineer.

I have had Crohn's for 2 years now.  It's been a battle that I shall never forget.  The last round of scopes done with a new GI doctor brought on a new medication - Azathiorprine, generic for Imuran.  The possible side effects - suppressed immune system and Hepatitis.  The GI doctor said it would be my decision to make.  The side effects were reversable if they attacked me. 

So far, I am doing ok.  I have issues with the Crohn's inflammation possibly attacking the joints in my body (not arthritis) and I've had a minor flare up here and there, but I have to say, I feel better now then I did the two months I was on nothing at all. 

 Reply posted for Mountaineer.

I have had Crohn's for 2 years now.  It's been a battle that I shall never forget.  The last round of scopes done with a new GI doctor brought on a new medication - Azathiorprine, generic for Imuran.  The possible side effects - suppressed immune system and Hepatitis.  The GI doctor said it would be my decision to make.  The side effects were reversable if they attacked me. 

So far, I am doing ok.  I have issues with the Crohn's inflammation possibly attacking the joints in my body (not arthritis) and I've had a minor flare up here and there, but I have to say, I feel better now then I did the two months I was on nothing at all. 

 Reply posted for Mountaineer.

I was wondering if you have checked into the disability office at your college.  They seem to be very helpful.  They may help with the dorm situation.  They may also get help for you from the medical office on campus with exams and Rx.  Also there are support groups that this website, ccfa, can help you find that may help you also.  This discussion board is a great source of really good information also. 

 Reply posted for Mountaineer.

Have you changed your diet?  You might be able to avoid the remicade and all the worries that come along with it.