You have Crohn 's-now what?

Have experienced severe cramps in your abdomen, blood in your stool, diarrhea and weight loss. Did you go to see your GP who could not figure out what the problem was so sent you a GI. After a battery of tests, CT scans, blood tests, colonoscopy, etc, the GI tells you that you have a form of inflammatory bowel disease called Crohn’s disease.

Crohn s what? The fear that you felt before was normal, your brain will move at about 100 miles an hour trying to put together everything that your doctor has just told you. Fear is common the first …I mean, a doctor just told you that you have a disease that there is no cure for. The bad news … you’ll probably be dealing with this the rest of your life. The good news … really isn’t so bad, you’re not going to die or anything!

So, now that we are beyond that part of fear and anxiety, lets try to make some sense of this Crohn’s disease. Overall, it feels like shit. You can lose weight, you may be tired all the time due to anemia, whenever you eat you find yourself having to use the bathroom immediately. All in all, things just flat out suck for you now. Most likely I’m on some medicines like Asacol, Pentasa, sulfasalazine and maybe even a corticosteroid such as Prednisone. If you’ve just started one or a combination of these drugs may be a couple of days before you realize that the benefits of them. The good news is that it will help, and you should see an ease in your early symptoms.

But what is the future? Life is going to be like this from now on? The pain will stop ever? Ever feel “normal” again? First off the future isn’t so bad … at least now you know what is wrong with you and you are being treated for it. More good news, many with experience long periods of remission in Crohn’s disease when symptoms disappear and life returns to the way that we knew before, but Crohn’s having to take medicine every day. It is not uncommon to get a couple of years in remission without an acute exacerbation of symptoms.

Once you’re in remission it is important to do a few things. Number one does not stop taking your meds!! Whatever you do is the most important thing that you continue taking all those meds all the time. These medicinal products are what you’ve achieved in remission and what keep in remission. If you stop, or often forget, then you can forget the forgiveness too. Secondly, at the first sign of a flare contact your GI. Let he or she know the symptoms you are experiencing and let them decide what should be the best course of action. Leaving the symptoms go too long without contacting your GI can result in a much more serious and flare you could bring to the operating room.

Worst case scenario in all this is that you end up having to have surgery to have parts of the small intestine or colon removed. Although surgery is serious and has a number of potential complications, you won’t have a choice. Surgery is a last resort. When there is no more meds or doctors can do for you and your body is at risk the doctor recommended surgery. Although scary, the result is usually positive and can lead to many years of symptom-free remission.