Hello. First post, and long overdue.

[stainlesssteel]

I was diagnosed in 1990 at the age of 17. I was in very bad shape. I took prednisone and imuran for about a year. The predisone caused acne vulgaris and interesting mental states. Fortunately, I began 1992 in total remission, and vowed to fight for a normal life.

I stopped all medications and began a punishing physical routine of exercise. I participated in boot camps and runs and got through college and law school as if I was completely normal. So much so that I wondered if the initial diagnosis had been mistaken.

Around ten years ago, the disease came back: i would be in great pain for a few days, then it would completely dissapear for years. I carried on happily as a young man would. Then the attacks became more frequent: every year, then twice a year, and now, about every few months.

After a thorough exam, the doctor has confirmed a fistula. He recommends humira. I know i need it, but i have fought so hard through the years to keep myself in top form, and i do not want to be dependent on meds for the rest of my life. Still, i feel as though i have no choice in the matter. The last few visits i told him that i was refusing the drug, and would try every alternative i could find.

Today is one of those terrible days : crippling pain, unable to eat and i am fighting down water. I am angry, depressed and tired. I welcome any advice and words of encouragement. Thanks for reading.





Today is one of

 

[UnXmas]

Do you have specific concerns about medications, or is it just the general idea of being on long-term medication? If there are particular risks or side effects you want to avoid, there are many different treatment options for Crohn's, so you or your doctor may be able to find an alternative that suits you better.

I know I'm going to be on meds for life, but I'm ok about that because I've managed to find ones that make me feel better. It did take a lot of trial and error to find what worked for me (I have multiple health problems, so I'm on quite a few medications all interacting with each other).

The disease really is out of our control to a large extent. Your efforts to stay healthy haven't failed - you've got yourself into a better physical condition to deal with the disease, and taking medication can be just one more aspect of taking care of yourself and improving your health.

 

[littlemissh]

Hi Stainless and welcome,

I think the thing to remember with Crohn's is that it is relapsing and remitting. You have seen this first hand. When you are in remission all is well but when in a flare/relapse the disease is damaging your bowel through inflammation, often you don't even know it. You think you are in control of it but you are not, you are simply ignoring it whilst it does its damage.

I have an unhappy relationship with both my disease and the treatment I require for it. I have come to the realisation that I would rather risk the possible side effects every now and then, than feel unwell all the time, get illnesses because I am so run down and undernourished, lose bits of my bowel progressively etc.

Once a part of my bowel is gone, it is gone.

But then when the disease is controlled and I am symptom free and clinically in remission I can have my medications reduced.
In the past I have not taken enough meds and so I have simply not got better, it has gone on and on with multiple hospital admissions etc. Now if I had bitten the bullet, had the correct meds at the correct dose and got on with it I would most likely have avoided a lot of illness etc and be on less meds right now and not almost wrecked my career...and saved my family and friends much heartache.

Others may have a different approach, but this is how I feel looking back with my retrospectoscope.