Undiagnosed

[Paigeyd90]

Hello!
I recently underwent a colonoscopy last week and they found inflammation in my small intestine. I am 23 years old so this was a scary process for me. They did a biopsy and my doctor said that the biopsy suggests Crohn's Disease. I have a follow up appointment May 9th for further testing. This is extremely scary and I'm not sure what my next steps are. Does anyone have advice or information on what will be the next stage of this? What kinds of treatments are there? Any advice on questions I should ask my doctor?

Honestly, I am just unsure of what Crohn's completely entails. The one person I know that has it has been hospitalized several times and has a lot of complications.

Thank you!
Paige

 

[Orchid]

Hi Paige, I know this is scary but you aren't alone!

If they make the diagnosis official, it's likely he'll make prescribe a corticosteroid (either Prednisone or Budesonide) to quickly try and beat down your inflammation and some form of Mesalazine to try and keep you in remission, there are a lot of formulations of it so it could be anything from Balsalazide to Asacol to Liada. If Mesalazine doesn't work the next step up is Azathioprine/Mercaptopurine or Methotrexate. Since it sounds like they caught your illness early your prognosis isn't quite as bad! Some people go into remission for years and forget they have it, but you are likely to be on some combination of Crohn's related medication for the rest of your life because people who stop taking medication when their disease is in remission are known to have flares (get sick) more often and more quickly.

When you're having a flare up you should always knowing where the bathroom is, watch what you eat, and you'll taking extra medication to try and make your flare go away. Your diet can get very restricted when Crohn's Disease is active. You should ask your doctor why you need additional testing when your colonoscopy and the biopsies from it show CD because they are the best means for getting a diagnosis.

Good luck!

 

[shamrock15]

You are going to have a lot of questions - more than you can imagine at this point. There are some people here who probably know more than many GI's treating us crohnies. Each person's crohn's acts a little differently, so the one person you personally know may not be a good model for your disease. Asking questions, and lots of them, of your health care team and people here should help you through. Write out your questions in advance of your appointment so you make sure you get the answers you need, and ask for clarifications.

The medication progression that was mentioned by orchid sounds about right. The side effects from the stronger meds can be strong, but not necessarily so. Start a food journal if you haven't already - what foods you have eaten, time of day, meds, alcohol. It is really important to record your observations on how you feel as well, and try to be as objective as possible. This will help you locate trigger foods for you. I would also throw a sleep chart on that as well - lack of sleep has proven to be a form of trigger too.

Lastly, try to make sure there is someone in your family or a good friend who you will be able to talk to. You are going to need that shoulder and support.

Most importantly, know that you have a very good chance of living a good life. Even with active crohn's, I have been able to complete two university degrees, work through two different careers with a good degree of success, find a wife, have a child. After all of this, I finally reached remission. Like a lot of things in life, you actually do get to decide part of how crohn's treats you. Become a student of your disease, and find out what you can do within it. Although there will be times that crohn's will get the upper hand, you can still lead a very productive and enjoyable life.

 

[Paigeyd90]

Thank you both for your responses! It definitely is making me feel a lot better. It seems with my research, Crohn's is very manageable. (You always seem to think the worst at times though). I appreciate your well thought out responses. I'm glad I found this forum. It has been so helpful!
Thank you!