Has anyone been told they have Crohn's Colitis?

[mama21princess]

I saw my gastroenterologist today as a follow-up from my colonoscopy in November. He told me that since my first colonoscopy in May, the inflammation has gone deeper into the lining of my colon, so it is now considered Crohn's Colitis. I had labs today to check my C-Reactive Protein, and he is doubling my dose of Lialda. In two months, he will check my CRP again, to see if the higher dose of Lialda helps the inflammation. If not, I will have to start 6MP. I am so discouraged. I was hoping for some good news. He said we will have to watch to make sure the inflammation does not show up elsewhere in my digestive tract. Does anyone have experience with Crohn's Colitis?

 

[CrohnsChicago]

I am also diagnosed with Crohn's-Colitis.

Where exactly in your small and large intestine are you inflammed? Lialda (and similar drugs such as Asacol) is more effective when combined with an immunosuppressor such as 6-MP, Humira or Remicade. Of course what combinations you use will correlate with the location of your disease and how severe it is.

I went the route of Asacol initially when first diagnosed 2 years ago. It did not hold up on it's own. It would help for a little while but every couple of months I was flaring again and back on steroids. I have now been on 6-MP for a year and it has finally gotten me into my longest remission so far (7 months) combined with Asacol.

I recommend you keep a watchful eye on your symptoms and focus on treating your body well with rest and a proper diet for healing. If your symptoms do not seem to disappear entirely then you need to discuss your options further with your doctor. Just don't let things get much worse before they have a chance to get better. And as scary as the idea of taking 6MP is (trust me..I was TERRIFIED), it really does have the potential to help get you back into better health. Kick it in the butt as soon as possible to prevent things from getting out of control and further damaged than they need to be. Wishing you the best and I hope you feel better very soon. :hug:

 

[mama21princess]

It isn't in my small intestine that I know of. My gastro has never really told me where in my colon it is located.

 

[CrohnsChicago]

Your colon is another name for a major part of your large intestine. It's the shorter, bigger portion of your in intestine that is connected to your anus. Crohn's in the large intestine tends to be a bit more patchy though it is not uncommon for it to exist throughout even within the anus.

It sounds like you need to really sit down with your doctor and ask him any and all questions you have about your disease including what it looks like. When it comes to crohns no two patients experience the same symptoms so it will be extremely important for you to learn to be your own advocate in the doctors office. And by having these discussions including all treatment options with your doctor you will learn if your doctor is a good fit for you in helping you get into remission.

Best of luck to you. Feel better!

 

[mama21princess]

Thanks. I wish I could take you to my next appointment with me. Lol. I never think of the right questions to ask when I am there.

 

[blackli]

I haves crohns colitis, but it also affects parts of my esophagus, and I get some extra manifestations as well, erthyma nodules, cancer sores, joint pain etc. no activity in my small bowel though.

 

[CrohnsChicago]

A good place to start would be to simply tell your doc that you don't fully understand where your crohn's is located, the severity of the issue and how it can affect your treatment plan and ask to explain in detail your specific diagnosis. It would also be a good idea to express any fears or concerns you have about your treatment including side effects and how your treatment plan will affect your everyday life. If you are unsure about your current treatment plan ask what your other options can be outside of what you have already discussed.

Requesting copies of your records for personal reference can be helpful if, for some reason you need to go to the emergency room and cannot reach your doctor. Also, if you at some point ever decide you want to get a second opinion, it could be accomplished quicker because you don't have to arrange for records to be submitted by your current doctor.

 

[jwfoise]

Thanks. I wish I could take you to my next appointment with me. Lol. I never think of the right questions to ask when I am there.

You can always start your list of questions now. As you think of questions, write them down and bring your list of questions to your next appointment. That way you don't have to try to come up with things in the 10 seconds after the doctor asks "any questions?".