I'm feeling a bit scared - help me snap out of it :)

[fenway1971]

It's Imuran time for me. Supposed to start today.

Two things finally sunk in today:
1. This disease will never go away. GI says I need to prepare myself for taking Imuran the rest of my life. I hate meds and this is hard for me to accept.

2. Side effects - in particular risk of screwing with liver and blood - are less risky than risk of my getting colon cancer. The "c" word scares me and I never really thought about it. I've had inflammation throughout colon for at least 5 years (when I was first diagnosed). Currently mild-moderate inflammation but I'm on prednisone (6 months and counting).


Has anyone else felt paralyzed like I do? I'm scared to take Imuran and scared not to take it. Very weird.

 

[D Bergy]

I was not keen on taking Imuran either. I ended up using LDN instead, but I would have used Imuran if my preferred methods did not work.

The additional risk for cancer is very slight to posibly non-existant for this drug. It is very hard to measure since the disease itself increases cancer risk.

You certainly want to monitor for Liver stress, but that is true of many medications.

You can reduce the chance of getting cancer with any of a number of supplements that also will help with inflammation.

I know one person on Imuran and she has done very well on it. Time will tell if it will work well for you.

Dan

 

[MINI Cooper]

I feel your anxiety.
I go in for my first Remicade infusion today.
With the talk of allergic reactions and even 'cancer' I am more than
a little anxious, but it is a risk I have to take., we all have to take when
our crohns symptoms get to be unbearable.
Hang in there, you're not alone!

 

[Wiles]

I still worry about immuran sometimes and I have been on it for 7 year. I have never had any liver trouble or anything like that while on it though.

 

[CD68]

Oh absolutey I am scared.

The patient education brochures they give you paint everything so rosey. You read it and wonder what the big deal with the disease is...just some tummy aches and vague references to an occasional hospital stay.

Then you find out,

about liver disease, liver failure, kidney problems as a result of pain killers, cancer, that you are looking at only a 50% chance of making it another 20 years (depending on your age), someone posted below about too much exposure to radiation from CT scans. And that's just the life threatening events...then there are fistulas, destruction of your sex life, camel humps and extra hair from steroids, bowel incontinence, etc. And in the middle of all this you have to wonder if your coverage is going to change...maybe you will lose your insurance, maybe you live in a country in which it's paid for but you worry about policy shifts or economics that may affect your treatment...

As I was driving today (yeah I got out of the house)! I thought about all the younger people with Crohn's and how catastrophic this is for them. I am 41 and I've had my children, found true love, had a career, done some fun and interesting things in life, I've come to terms with my mortality and I won't feel cheated if something fatal happens to me although I hope that it doesn't. I don't know how the younger 20 somethings can pull it together enough to get through this...I figured that it must be the feeling of invincibility. As for me I've been taking some good antidepressants. When I was first diagnosed I went through a bottle of xanax in no time.

There are a lot of treatments coming down the pipe for Crohn's. I'm really pinning a lot of hope on the Osiris adult stem cell drug and the idea that in my lifetime there might be a very good way of treating this gives me hope.

Nothing like facing very serious problems when everyone around you is happily chirping away about clothes, parties, and their new car like nothing is happening. That's why I like visiting this board.

 

[fenway1971]

Thanks all.

Dan - I read your thread and others about LDN. I asked my GI about it and she had never heard of it. I guess I'm not surprised. But, she promised to look into it so we can discuss when I see her in two weeks.

 

[cheeky]

It's Imuran time for me. Supposed to start today.

Two things finally sunk in today:
1. This disease will never go away. GI says I need to prepare myself for taking Imuran the rest of my life. I hate meds and this is hard for me to accept.

2. Side effects - in particular risk of screwing with liver and blood - are less risky than risk of my getting colon cancer. The "c" word scares me and I never really thought about it. I've had inflammation throughout colon for at least 5 years (when I was first diagnosed). Currently mild-moderate inflammation but I'm on prednisone (6 months and counting).


Has anyone else felt paralyzed like I do? I'm scared to take Imuran and scared not to take it. Very weird.

i can definitely relate to your first comment about being on this med for life... i was devastated after finding out that i will have to be on meds for good.... silly me, i was thinking optimistic and expected that when i was done the pred, i'd be in 'remission' and that meant controlling crohn's by diet and i thought i could go see a naturopathic and it would also help me stay in remission...

well, that was my ignorance ... even when in remission, you need maintainence meds and my GI flat out told me not to bother with the naturopathic route because it 'won't work! it will get worse. you'll end up with an obstruction and eventually a bag on your side!' ... he really killed my optimism.

so here and there it crosses my mind that i'll be on meds for good, and i don't like the thought of it... and i worry about developing a tolerance for the meds and not being able to help my condition in the long run (i DREAD the thought of surgery too).

 

[D Bergy]

I am happy the doctor is looking into LDN for you. Most doctors will not even take that baby step.

If it works for you, it is really a good treatment when compared to other options. I think that it is unlikely that the body would ever stop responding to it since its action is only for a few hours.

I think how a persons life is using any treatment is highly individual. Statistics are handy for an overall picture, but they really apply to no one in particular. No one here is doomed to all of these side effects and possible future problems. We just do not know ahead of time what we may develop or if we will have any problems at all.

It is no bed of roses, but it is just something we have to deal with day by day. It gets discouraging at times, and that is one of the reasons for this forum. I get more discouraged by my wife's condition so I guess I just do not think about mine very often. I also have been dealing with diseases without the help of a doctor so long that I have more confidence in treating these on my own.

I saw a saying that puts it into perspective for me, maybe it was on this forum.

Worry is like a Rocking Chair, it gives you something to do but it does not get you anywhere.

Dan

 

[mandy]

hi, i know what you mean, i was put on imuran in november 08, i was so scared to take it and the hospital consultant didnt even explain it much or how long i have to be on it!
Where i livre in the UK the docs arnt very good and had to wait so long for test results to come back and have an apptm to see any one , america seems to have better docs, is that cos you have to pay for it?
I am having a flare up at the mo and i cant even get to see my family doc today or (yesterday) to ask if i should go up on the pred, i am just sitting here suffering without help!!
I think i will just go up on pred myself, i seem to know more about crohns than the doc!!!
I read somewhere that when on imuran you should sit in the sun because it can cause certain cancers!! has anybody heard of this.
all the best to you all.
mx